HIV and Us!

I hated being pregnant. And I hated being a mother. But I am so pleased for, but yet also so envy those that enjoyed it.

2021-04-02T04:32:00.044+01:00

I never wanted to be a mother. I tried to get sterilized at 19. They said no! They said that I may change my mind later?

My friend Sue with Caja.
I have no photos of me with her when a baby
as few took photos except me

I should have listened to myself later. I did not change my mind.
But I so love Caja yet I should never have had her or any child....
I fucked her up even before she was born.
I should never myself have had a child.

Yet I worked with others children for so many years and indeed I ran many young parents groups.
I was very good at it. Indeed I have qualifications in it and certificates and so much experience. I am an expert...but with others children. I am crap at my own

I am indeed trained in it and there is very little I do not know, academically !!! .......... about being a parent and how to look after children, from birth to teens and their health and well being.

But having a child myself ....was a huge mistake!!

I did know this. So from very young. So I did for most of my life spend a lot of energy, trying not ever to be pregnant.

Therefore I had so many years, since about 14, of contraception, some that damaged me, like the pill and the coil.
I was left with damaged fallopian tubes from the coil and hence many years of pain.
The pill I tried off and on from 15. It made me so very ill, mentally and physically. I just could not take it. It sent me crazy.

So sorry you guys. Once the pill came about, for you men it was brilliant .......FOR YOU, and you all thought that after the pill no consequences for you or us existed? Great for you. But it solved very little for many of us women. In fact I think the pill harmed many of us women. Well it did me.

But it made it so you thought there was no reason anymore not to have sex with you just because you wanted to. Another story!!

But I did accidentally, and very accidentally, first get pregnant, in my early 20s.

I was on the coil, but I had just had a new one fitted, as the last one went through my uterine wall and caused me to hemorrhage and resulted in a hospital stay and operation to remove it.

So when I got pregnant, I had just had another coil fitted, but I was using the pill as well, until the copper 7 kicked in.
And yet I got pregnant!

It so hurt me that I did . The coil was sold to me as the solution as I could not take the pill for anymore than a couple of months without going totally off my head.
Then the first coil I had, the one with spikes ( cannot remember its name) went through my uterus and pierced it. It went into my abdominal cavity . Caused infection and then an operation to have it removed.

But they told me the Copper 7 was safe, and effective. We now know it was not at all safe. And for me it was not even at all effective.

So I had an abortion, I am not ever going to use the nicer term 'termination' as to me it was an abortion. I killed her. My baby.
Do NOT!! get me wrong. I respect every women's right to choose. Our bodies, our choice.
It was my choice.
But do not EVER think that choice is ever easily made, either way. It is not for any of us.

Despite not wanting to have her, she was a her. Once she was a reality, I still loved her and talked to her. When in my tummy

But I so betrayed her. My baby. I kept saying to her I will never kill you. But I did!!!!!!Believe me....In those days I felt I had no option. Well I felt had no option.

I was so alone and mentally....... and not at all that well

My parents were older parents and for me to have a baby would have been disaster for them and indeed for us all. Yes I was selfish as I could have had her adopted and every day now I wish I had. But then I knew to do that then would have destroyed me. And I was already destroyed.

Having been sectioned at 17 asnd having had Deep Sleep Treatment. I knew I would never then survive having a child adopted. Yes I was so selfish

But that is another long story .........going around to doctor after doctor, with my mum, who did understand. Trying to get two signatures for the abortion. Some who wore a LIFE badge. LIFE was a prominent anti abortion campaign in the UK then. https://en.wikipedia.org/wiki/Life_(UK_organisation)

But to go to see a gynecologist to try to get a second signature. To be confronted in, I think Winchester Hospital, by a gynecologist and her team wearing LIFE badges!! Yes she was a woman!! Nothing could be worse!!

Well not for me!!

And what I have never got over is she realised my coil was still in place. A copper 7. And I had got pregnant despite it.
So she just took it out!! Then and there, with no pain relief, no consultation, she just removed it....it fucking hurt. So much I passed out.
And all she said was 'hopefully this will solve your problem' !!
Disingenuous at best!!

It didn't. Solve my problem. Apparently the IUD was outside the amoebic sac.So my pregnancy carried on
Therefore when the abortion happened it was later than it should/would have been. And while thankfully I did not have to give birth, like some had to. The operation was long and I was very ill for some time.

And the LIFE gynecologist removing it did have the result that when I finally got the two signatures I needed for the abortion and I went in to have it. No one believed that I was using contraceptives when I got pregnant?? That I was not only using a coil but the pill as well!

So I was put into a ward mainly with women trying to save their babies! A ward for women with complications, who were desperately trying to save their babies. I was hated by all.

And lectured at by everyone from the cleaners, the other patients, the nurses and doctors.
Told I was stupid for not using contraception. No one believed I was both on the pill and had a coil in place when I got pregnant??
As there was no coil by then in my uterus!!
And in those days GPs/birth control records did not follow you into hospitals.

But who would have cared if they had?
Everyone there, in that ward wanted someone to blame and I became it.

I was spat at by one woman in to try to save her baby.
I did not blame her. At the time I felt I deserved it.

I did try to put things behind me, trained as a teacher and after teaching I decided youth work was more me and so I became a youth worker.
And when I met Barry and by the time I was 31 and we were relatively secure financially and I knew we were together for the long haul.

I did not exactly change my mind.
As neither of us had children on our agenda.
But that we did have a child is all my fault and all down to me.

As I did not always use the extensive the anti pregnancy defenses that I had had for so many years in the past until then.

I stupidly, actually thought I was so damaged I could not get pregnant anyway and indeed my doctor did confirm this.
To be fair being a father was never on Barrys agenda either.

He loved me and still does and went with what I wanted and still does as I do him. But he had no understanding of pregnancy etc, so he left it to me.
He made a good father.
Well better than I ever did a mother!

What changed was I finally decided to have an operation to remove the scar tissue in my fallopian tubes and that in my uterus etc caused by the coils and my late abortion etc. As I had so much pain from it.

I was settled. The time had come to sort things out for me and that, for me, included sorting out medical things.

I went into City Hospital Truro to have that done. City This hospital is long gone but they treated me well.

I guess the first time I ever felt treated well by any NHS hospital.

And about 6 months later I found I was pregnant!!
Not what I planned!!

I was still using contraceptives. Not the coil, I had it taken out a few years before, as it caused me so much pain, infections, and was the reason why I needed the operation. And I was not the pill anymore as that also made me feel so shit, and made me so crazy. I just could not take it anymore.

But I did use the cap and religiously and made him also use condoms.
Yes of course, that did not always work, nor him withdrawing - which I knew was never going to work, but he did think it would LOL!! But I had confidence, in that I was using the cap.

So I got pregnant at 36.

I hated every moment of it! From the first it felt like and alien had taken over my body. So sorry I know that will upset some, but that was my reality.
I was sooooooooo friggingh sick!!
And in pain and every day.

9 months of utter hell and the birth?? I may write about the birth in more detail in time . But just believe me .........it did not get any better!!

I can hear all those women I so admire who have had more than one saying ...............

"you are wimp,. its part of the course. Being 'uncomfortable' in pregnancy is normal. Birth is painful but you forget it??"

Do you??
I never have!!

And the view is by most that I was selfish??

~No I was in utter pain......... distressed ............ off my tree ....for the whole 9 months.
And it was so amazing I actually carried her for 9 months, to full term!!!

I had have other pregnancies besides this after the abortion, despite my contraception efforts- I may write about that another time. But none stuck more than a month or so.

So I never expected this to stick, none others had since the abortion. But Caja is and was so stubborn.
So against all odds, she stuck!!

Hormones have always done me in. In pregnancy the hormones made me crazy yet again and I was in pain and I was so sick, sick sick sick...... blood pressure also through the roof.

When I gave birth, I had to be induced, As I had eclampsia............. not pre-eclampsia. I had eclampsia. I was close to death and my baby too.

But even in labour for 36 hours and with me bleeding and in so much pain, no one recognized things were going so wrong.
We only survived due to a shift change and someone finally noticing, just in time. And my having an emergency cesarean, just in time.

Due to which we both, me and my baby, nearly died. And it took me months to recover physically from that and my baby.
But I never recovered mentally.

I am not sure that many who found pregnancy and birth good, and not like my experience. Would ever have had more than one, ever would have, if they had felt like me?

Or am I fooling myself? Is pregnancy that awful and painful as it was for me? But somehow worth it??
That is what I am told? It wasn't for me sadly.
Let me know?

I have never understood if what I went though is 'normal ' and I am a wimp and failure as a woman?
Or that what I experienced is not usual?? Or that I am such a selfish and self centered person that I could not cope with what so many women do all the time??

I have actually met quite a few women in my life that said they liked or enjoyed being pregnant.
And for most, even if they felt sick or ill at times, the result was worth it.
And the years bringing them up?

I must be in a total minority?
I am glad very I gave her life and she is alive and I hope she is living her best life...but!!

But having a baby was horrible for me. The whole thing. From early pregnancy until she ran away from home at 16. For which I do not blame her. I was a nightmare as a mother.

And it still continues to be
As she has no relationship with me. I cry all the time about that and always will

But once pregnant I had no choice. As no way would I ever abort a life again. And especially not Barrys child. So I had no option. Well in my view I had none.

Barry is the best man/person I have known. He was and still is my rock. If he had said he did not want us to have a child I may not have. But he did not. So I carried on with it.

It was hell. And certainly, the ending was hell too
Barry actually got back, from sea........ Just before the birth.
He did manage to get back, just hours before I had Caja ............I was so lucky he did. But hadn't seen him for over 3 months, and rarely before.

He did stay home in the early weeks as i was so sick I could not move. So he had an extended leave as i could not look after the animals.

But after that he went back to sea and had not been there for any of the scans and he had not seemed to have been remotely involved at all?
In any of Cajas pregnancy. I think he came home on leave once in my whole pregnancy, after the 19 weeks when he was at home. After that I think he cam back once when I was about 6 months pregnant. He seemed to take no notice of my pregnancy at all and then went back to sea.

But he got home for the birth, just in time...................

He had to be flown out of his ship on helicopters, then to the UK. So glad he made it
He even had to push me on the trolley, to the operating theater, when the shit hit the fan.
Having only got there a few hours before.....as no porters at that time of night then, in so such pain. To the operating theater.

I was hemorrhaging. I had eclampsia, I had existing damaged organs, I had Placenta previ. I lost so much blood.
Yet at the time I told them I was hemorrhaging, for some hours, and they, the staff on at the time, told me I was wrong..... despite the blood??

None of my previous gynecological history was taken into account. I did try to tell them at the time., But no one listened to me. But I was right

I am lucky. Caja is lucky
That we both survived!!!!I do not think she has any idea how close we got to death. But then why would she or even care. It is like yesterday to me still. But she is now 32 years old and of course nothing to her. Of course not. She was the baby.

I was in soooo much pain.
We both nearly died, we both, Caja and me ..... Both so lucky to have survived

We, Caja and I, did have a few good years when she loved me. I should be grateful for that. And I am.

After I got over the birth and then the severe Post natal illness I suffered, when she was around 4. We had a few good years until her own hormones kicked in when she was about 9.

In those years, she seemed to love me? We got on, she talked to me, she seemed to like me?
I had hopes and dreams that we would in the future have a good mother, daughter relationship.
Other mothers even said to me at that time ( unbelievable now but they did) how lucky I was to have such a good relationship with my daughter!!!!!!

But it was not to last.
It all turned tits up starting when she was about 9 and got worse when I had my accident when she was about 12
And NOW? she ......wants nothing to do with me
Did my best.
But my best was not good enough. In fact it was crap.

But we were OK for a short while. And when we were OK, when life was looking good. Once I had got over my post natal illness I formed www.pni,org.uk

As I was then and briefly as it turned out, in a good place and wanted to assist others.
And I think that for a short time I did help others?
That www.pni.org.uk helped others and without me being part of it still continues to>

But now, for me, it is is a different story.

I look back and wonder about how I ever thought I could help anyone else? And how did I have the audacity, given how much being a mother has been so horrible for me.

But at the time I was in a good place. And I truly had hoped and thought it was all behind me.
So sorry, to all, as it was not.

I am so envious of all that having a child was on the whole a positive experience.
And even more envious of those that it was enough to have had had more than one child. And these days so envious of those that have grand-kids that actually want anything to do with them

I feel so diminished compared to them. I wish I had never had a child as then I would not have gone through what I did or had anything to compare it with.
I so feel now an utter failure. I thought I was holding up our right not to have kids if even if it was not your thing??
But having had only one and made a total pit of it, I now feel a utter failure

I know those that that have had 2,3,4, 5, 6 , even 9 kids ........ and seemed to enjoy it??? Or at least not felt was utter hell??
Most of you I know now, are now grandmothers, even great grandmothers? And so many are much younger than I
~
I am lucky that I am now a great aunt, But I am never probably even ever will be a grandmother and I am now 68.

Being a grandmother seems to rely on you to have kids,. and then your kids then also have kids. And that they all want you in their life. My one child does not want children.
And I cannot blame her as nor did I.

And even if she did she would not and does not want me involved with her life
I am in so awe of you all

But now that makes me feel like shit and so very inadequate. As I only ever had one child and she does not want me in her life.

I am so pleased for you all, yet .... Yet I envy you all. But still love hearing your stories and am so pleased for you all.

But I feel shit.

Worse Christmas and New Year ever ....................... perhaps!

2021-04-02T00:56:00.000+01:00

I know we are all supposed to be cheery over this period and I do try. I do 'usually' try to make the most of it and make it good for any that join us for the period. But this time I failed. Except for Christmas day. When between me and Barry we managed to cook a Christms lunch and make it Ok for our guests. But other wise I failed this year.

It has always been a difficult time for me, and for my dad. Which is one of the reasons it has always been difficult for me. But also the Christmases on the streets or in squats, or once I'd sorted myself the years when I had no where to go on Christmas and even had a boiled egg one time for my Christmas lunch - but actually that was not too bad as I spent the time making a cupboard for the flat to hide my emersion heater and succeeded all on my own, So that one was not to bad really. Then the so many years when Barry was at sea at Christmas, especially when I had my daughter and she wanted Christmas to be special, But it was just me and her and while I tried I could not seem to make it special enough.

But that is the past and in later years I have tried to make it good, or good enough.

But anyway this year.
Mentally and physically so ill. Mentally on full meltdown.
And then to do it publicly on Facebook!!
Facebook in one way is a lifesaver. As it is the only way I have to keep in touch with so many old friends and relatives. And indeed those I know now, even the village community I live in as I so rarely see anyone.

But on the other hand Facebook is the reason I have so few friends especially local. As due to my using it to rant when in meltdown,

No ones fault but my own. But we both went down with a nasty bug on about the 21st and neither of us are over it yet. Started as a nasty cold but then nausea and me vomiting and neither of us with any appetite at all, still haven't.
I freak out if I vomit as I am emectophobic and drink brandy to try to blot it out, a terrible combination.
Then I got a letter from an old friend. Who meant well and said some lovely things like how she misses and thinks of me. But for me it dragged up the past, my accident, her illness later and especially the dire mistakes I made with my own and only birth daughter, that I will regret for the rest of my life. I just did not need to be reminded although I know she meant so well.

2019-06-25T11:56:00.000+01:00

I found this picture of the Elgin Avenue squats and by total pure coincidence, it is of the one I lived in!!!

I was on the top floor, middle house, front left window. I used to try to grow herbs (no, not weed, just herbs like rosemary, thyme etc to cook with) in that window box

I lived in Elgin Avenue in the squats in the early 70s. I have no idea of time and dates then as I was such a huge mess then.

But it must have been before 1975. As in 1975 I went to the Henderson, a theraputic community, https://www.bpc.org.uk/magazine/Henderson for a year, until late 76. And got myself together and I never lived like that again.

I was young then, I am now 66.

But as a homeless then young woman then living on the streets, it saved my life......... pretty much.

Those squats saved a whole lot of us.

And thanks to Piers Corbyn. Jeremy Corbyn's brother who then was a housing activist and was the brain behind it all and organized and ran the Elgin Avenue and many other squats .

I cannot remember which number exactly I lived at exactly but I was on the top floor flat of that house, in the picture.

And I remember the phone box was almost just outside my building, it was just out of the picture to the right.

And if I kept my window open I could hear it ring. And arranged my family and friends to ring it at designated times. No mobile phones then!!

My house/flat mate was Joe. He seemed to think he owned that top floor flat,?

He did not of course as it was a frigging squat, but it seemed, he thought he did??

The top floors were a premium place to be in as then you were well out of the smell from the drains and the rubbish that was pilled 6ft+ high in the back gardens.

As no one took our rubbish then so we had no option and just threw it out of the windows into the back garden. Or threw it on the other rubbish in the street, as I did.

Sorry it is so dire but that was how it then was.

He only let me in to stay in 'his' flat as he wanted to get into my knickers, which he did as I could not care less then as all I wanted is to not be sleeping on on the streets.

But he soon got bored with me, thankfully.................

But the guy actually had notches he scratched on his head board of his bed!!!! in fours i.e III III III III etc, etc and then crossed out - I think I was about number 30? or so.

I was so very relived when he got tired of me

The daft thing is he actually had a very nice and very posh and pretty rich girlfriend at the time? He probably married her......... Hi Joe

She even had a car that she would arrive in and park outside. Pretty unknown for women to have their own car then.

Such a very well dressed, posh and very gentile and a lovely young woman. But how could she not know what a predator he was??

But she had to have seen his notches? How could she not??

She slept in his bed too when visiting him??

Yet she continued to be so nice to me?? She had to have known?? She had to know what an utter predator he was??

So I stole her ring, her gold ring that he gave her. She left it in the kitchen when washing up, so I took it ....................

Then I threw it into a bin,.............it was during a dustbin strike, one of many at that time LOL!! So I knew it would never be found and it never was.

I did not want it for any money, just to get my own back.

They spent so many hours looking for it. With me enjoying and so laughing to myself.

Surprisingly they never suspected me.?? As they knew I would never be interested in selling it for money.~~

But I was so mad and so took it, and then dumped it??

Not me at all I do not do and have never since done this sort of stuff. I am very honest and do not and never did steal, well never from any individual.

I would rather starve and I have starved rather than do that

BUT, this was different! This was frigging revenge!!!

They never got it back or realised I could have taken it?

As they knew well I was honest............... and actually I was, very.

But I wanted to hurt him for what he was doing and had done to me. And they thought me harmless?

It represented for me that he treated her with such real respect and even bought her expensive stuff, the ring was only a small thing he bought for her

But me, he did not respect me, not one frigging iota.

I was just something to wank into.

For a few months he used to fuck me whenever he got the urge, any time of the day or night and I let him as anything was better than going back on the streets.

Had I been more together I would have realized I could have taken it to the squatting community and got another flat to stay in.

And he may have even been chucked out as he never needed to be there?? Joe was working full time. I think in banking or similar would you believe??? And he had, comparatively to the rest of us then, lots of money!!

But he was a chancer. He did anything to save money and have more to put in his bank, including living in a squat when he could have afforded to rent.

He also had a side line buying drugs in bulk as he had the money to do that and then selling the drugs, that he himself did not take. He did smoke weed but nothing else. So he bought that and other much harder drugs. coke ,morphine, Heroin and also LSD in bulk and sold to other poor squatters, in very small packets at extortionate prices.

A very nasty man that was only living here for what he could gain for himself!!

Well at first he used me for sex, but gradually thankfully he soon got tired of that.

As I just turned my head and showed no interest,

Even he got sick of that.

I had done it for money elsewhere, but on my own terms. I learned that at least

We as young and homeless, women were so then so very vulnerable.~

But then it was us,

But now its women from all over the world are now targeted. All vulnerable are now at risk.~

OK not me now......thankfully not now?? And not for many years.

And who would ever want an old boiler like me now LOL?? Thankfully not and I have long turned my life around. And partly thanks to being able to get off the streets and into that squat

People like Piers and Jeremy Corbyn had their hearts right. In the right place.

Not sure about Piers Corbyn now as he seems to be off on one these days. But he sure did then.

https://www.independent.co.uk/arts-entertainment/photography/new-photography-exhibition-shows-the-tough-reality-of-the-now-barely-legal-squatting-movement-a6695946.html

DST- Deep Sleep Treatment/Therapy or Narcosis Therapy

2019-02-13T13:00:00.001+00:00

We all have our stories to tell and I do not ever judge.
But this is mine, Well not all of it as I am not dead yet. But where it began for me and still impacts my life and hugely.
So if anyone is at all interested as to why I so struggle and why I am still so traumatized. Despite years of 'therapy' and working on myself. Trying to make it and myself 'right'.

Is because I too went through this. When I was 17. In around 1970/71.

Don't expect me to remember the exact year. It was 70 or 71 and it was 'only' about 2 months of my life. But it changed me, and forever.

And I am lucky, or very unlucky, that I remember anything.

A side effect of this is it wipes your memory. When I was finally woken up I could not even remember my name, my parents, my then boyfriend Tell, or anything much at all.
Took me years and with horrific flashbacks to get it right and to begin to tell my story
I was too young to give permission, so my parents did. They were told it was 'in my best interests'
They loved me, they just wanted me well, and I was not well.
But this almost destroyed me.

And not at the Royal London where the instigator, William Sargant was based.But for me at Park Prewett, Basingstoke. An NHS Hospital.

As while little is known anyway, what is even less known is it did not just only happen at the Royal London under Sargant . It happened all over the country. I have been told right up to 1976??
Abet in a smaller way with a smaller number in each unit than in Sargants sleep unit..
But it still happened to me and so many. All over the country
And many of us have so tried to speak out. Indeed I tried so hard. Only to find, like all, my records have been 'lost' so there is no proof.

We are all aging and we are the last who can testify as to what happened to us.
And soon we will no longer be here. Which is what is hoped for.
I am NOT a conspiracy theorist. Never have been and never will be. So I make no judgement or opinion on any links in the article to the military or the CIA or whatever.
In fact I personally doubt this.
I think it was a psychiatric treatment theory, instigated by a very flawed psychiatrist that sadly was allowed to get out of hand and was taken up by others. That went so very wrong and was so abusive to those that had it.
But I do know what happened to me. I have written about it myself but this account of the reality of it tells it better than I ever could
https://ectstatistics.wordpress.com/…/william-sargent-deep…/
________________________________________
DST- Deep Sleep Treatment/Therapy or Narcosis Therapy
( It was known under different names depending where you had it)

1965 - 1975 - London’s Royal Waterloo Hospital .
How 'depressed' women were put to sleep for months in an NHS hospital room - leaving mental scars that remain 40 years on.
There are many horrors that Elizabeth Reed (below) recalls from her time at London’s Royal Waterloo Hospital, but one in particular lingers in her mind. She describes a small, windowless room at the top of the red-brick Edwardian building, just lit by a night lamp on a nurse’s desk.
Six beds are jammed together. The deep breathing of women in a drug-induced sleep. The fetid stench of unwashed bodies.
‘It was like being buried alive,’ she says. ‘I was lying there in the dark, hour after hour, and couldn’t move. I wasn’t aware of my body, just my head in this darkness. You could hear people moving around and other people breathing and moaning.’
Recalling footage of a patient having narcosis treatment
While Elizabeth is one of only a handful of women prepared to speak out, her story is not unique. Up to 500 women, suffering from conditions such as postnatal depression and anorexia, passed through the Royal Waterloo’s infamous Ward 5 before it shut 40 years ago.
Heavily drugged and subjected to horrendous levels of electro-convulsive therapy (ECT) and even lobotomies, the unluckiest were taken to the 'Narcosis Room', where they were put to sleep for weeks at a time.
Almost all teenage girls and women in their early 20s, they were treated as little more than guinea pigs by controversial psychiatrist William Sargant as he conducted a bizarre experiment to ‘repattern’ their brains and cure them of depression.
If all this sounds like the stuff of science-fiction horror, it is no coincidence a new psychological thriller, The Sleep Room, by clinical psychologist-turned-novelist F. R. Tallis, draws heavily on Sargant’s scandalous treatments.
But behind the fiction, questions remain about why the women of Ward 5 were subjected to such cruelty at an NHS hospital. Two of them, now in their 60s, spoke about their experiences to Femail this week.
Survivor: Elizabeth Reed is one of only a handful of women prepared to speak out
‘It’s so easy to dismiss us,’ says Elizabeth, a 63-year-old grandmother and former marketing director from London. ‘It was a long time ago and we were psychiatric patients. Many of us were left with pieces of our memory missing.
‘We were not drooling maniacs, but if you’ve been put in a sleep room, then your memories are not going to be clear. I lost huge chunk of my past.’
Officially, the Department of Health says it no longer has records of Sargant’s work at the Royal Waterloo, affiliated to London’s St Thomas’s Hospital. However, Elizabeth has a copy of her referral letter from January 1973, stamped with the ominous words: ‘Admit to Ward 5.’ Notes reveal she was given a ‘course of narcosis’.
She had been diagnosed with ‘obsessional neurosis’ and, by her own admission, was very ill — depression compounded by a difficult childhood.
‘But many other women I have spoken to say they were suffering from milder forms of depression and anxiety,’ she says. ‘The treatment was completely out of proportion.’
She was admitted to the Royal Waterloo in spring 1973 when she was 22 and engaged to be married. After arriving on the 22-bed Ward 5, she was sedated and underwent ECT — sometimes every other day.
‘I can remember the sound of the ECT machine being wheeled down the corridor and it being switched on and off in other rooms,’ she says.
‘It was so frightening. First of all, they injected you and you had an awful feeling of falling backwards into yourself. After ECT, you didn’t know who you were.’
Eventually, Elizabeth was moved into the Narcosis Room beside Ward 5 and put into a drug-induced sleep.
'I was awake, but couldn’t move or speak. It was torture, lying there for hours in the darkness'
Women there were occasionally woken to be taken to the toilet or to be fed. ‘We were like zombies,’ says Elizabeth. ‘I couldn’t walk. I had to be lifted. Afterwards, they put you back to sleep again.
‘The worst time was when I started not to be asleep. I was awake, but couldn’t move or speak. It was torture, lying there for hours in the darkness.’
Sargant, a founding member of St Thomas’s department of psychological medicine, who advocated the use of drugs to treat mental illness, operated his ‘sleep room’ for ten years until 1973.
Four patients are known to have died there and yet no one stepped in to stop him.
A Cambridge medical graduate, obsessed with making a name for himself, he used high doses of tranquillisers and administered ECT up to twice a week on Ward 5 and every other day in the Narcosis Room.
At the heart of his treatment was his belief that the brain could be ‘repatterned’ to erase bad memories.
His fame - due to TV and radio interviews and best-selling books - ensured a steady stream of patients. He was friends with authors Aldous Huxley and Robert Graves.
Actress Celia Imrie was 14 when she was treated by Sargant on Ward 5 and given huge doses of drugs and ECT.
In her 2011 autobiography, The Happy Hoofer, she recalls sneaking out of bed to peer into the sleep room. She describes ‘dead-looking women lying on the floor on grey mattresses, silent in a kind of electrically induced twilight’.
But to this day, she is unsure if she had treatment in the sleep room because patients were drugged on the ward before being carried there.
Up to 500 women, suffering from conditions such as postnatal depression and anorexia, passed through the Royal Waterloo's infamous Ward 5 before it shut 40 years ago
Up to 500 women, suffering from conditions such as postnatal depression and anorexia, passed through the Royal Waterloo's infamous Ward 5 before it shut 40 years ago
‘You went in asleep and you came out asleep. So maybe I was in the Narcosis Room. I could not possibly know,’ she says.
The secrecy surrounding Dr Sargant’s work has even led to claims he was being bankrolled by British intelligence and the CIA. He certainly had links to the military in World War II, working at Porton Down, the Ministry of Defence biological and chemical weapons research base.
But long before he died in 1988, Sargant destroyed all his records, which might have shed light on his sinister treatments.
'It was impossible to rebel because you were constantly drugged. It was an unreal world and I was frightened and disorientated'
According to Hilary Jameson, who arrived at the Royal Waterloo in 1970, being admitted to Ward 5 was ‘like falling into the jaws of hell’.
As a 17-year-old A-level student in Oxford, she stopped eating after her parents’ divorce, though she insists she was far from anorexic.
‘People were talking about this marvellous man in London who could work miracles,’ says the 61-year-old, now a psychotherapist.
‘He was stern, a tall, cold man with very dark eyes. He didn’t speak to me. He just told my mother that if I wasn’t admitted then I’d die.’
Within half an hour of arriving, Hilary was injected with largactil - a powerful anti-psychotic drug.
‘It was impossible to rebel because you were constantly drugged,’ she says. ‘It was an unreal world and I was frightened and disorientated.’
Forced to eat huge amounts of carbohydrates so that she put on weight, Hilary had an ever-present threat of ‘narcosis’ hanging over her if she did not show signs of improvement. ‘We used to see the women in the sleep room being taken to the bathroom or to be fed and they were like ghosts. It made you feel very worried. I couldn’t make sense of what was going on around us.’
Hilary was forced to undergo ECT and displayed to medical students by Sargant as he taught them ‘how to deal with anorexic girls’.
Actress Celia Imrie was 14 when she was treated by Sargant on Ward 5 and given huge doses of drugs and ECT
Actress Celia Imrie was 14 when she was treated by Sargant on Ward 5 and given huge doses of drugs and ECT
‘He came across as highly respectable and authoritative,’ says Hilary. ‘But most patients in Ward 5 were just young girls who had problems with their families. It was barbaric.’
A leading psychiatric expert, Professor Malcolm Lader of King’s College, London, recalls how, as a junior doctor, Sargant showed him his sleep room several times in 1966.
‘To be frank, I was horrified by what I saw,’ he says.
‘The women were really cramped together. It was dark. It was like twilight. There was a terrible smell of unwashed bodies.
‘It was a fraught procedure to be sedated for that amount of time. Most importantly, there was no evidence that narcosis had any effect.
‘He was doling out drugs in large doses that were way above the recommended maximum dose. I resolved never to send anyone there.’
Professor Lader also sheds light on why no one stopped Sargant.
‘He was an over-powering, imperious figure. He spoke to me as if I must approve and I’m afraid I was too junior and too cowardly to say I thought the whole thing needed properly investigating.
‘They wouldn’t get away with it now because the law has changed. You have to show there is some logic and rationale to what you are doing.
‘But back then, he would not brook any opposition. He built up an empire filled with his acolytes.’
There were also rumours, says Professor Lader, that Sargant was untouchable because he was supported by British intelligence or the CIA. He was a frequent traveller to the U.S. and wrote in his autobiography of being entertained at the White House during one of his trips.
‘He was interested in brainwashing and so was the CIA. He may have been protected by his contacts.’
Perhaps it is no coincidence that Ward 5 and Sargant’s sleep room closed when he retired in 1973 — the same year the CIA officially ended its top-secret mind-control experiments, codenamed Project MKUltra.
Whatever the truth, the young women from troubled families made perfect patients for Sargant’s experiments. F. R Tallis, who researched Sargant for his novel, says: ‘He cherry-picked them. They were easy targets — alienated from their families and unable to challenge his authority.’
'There was no way back to my old life. I am angry about what I feel I missed out on. I've lost chunks of my memory'
Stephanie Simons, a 78-year-old Sussex artist, visited Sargant’s private rooms in London’s Harley Street in 1967 suffering from depression. She sheds a more sinister light on the bias towards women, recalling how he asked her to strip to the waist so he could examine her before administering anti-depressants.
‘He didn’t ask me to get dressed again,’ she says. ‘He told me to sit in a chair, naked to the waist, and talked to me for nearly an hour like that.
‘He was stern and professional, so I didn’t dare say anything.’
Today, Sargant’s reputation as a serious psychiatrist is in tatters, but there is still interest in his mind-control books.
Experiences: Behind the fiction, questions remain about why the women of Ward 5 were subjected to such cruelty at an NHS hospital
A copy of his brainwashing title Battle Of The Mind is said to have been found at an Al Qaeda training camp in Afghanistan.
As for the Royal Waterloo, it closed as a hospital in 1976 and is now owned by an American university. Sargant’s sleep room is a student bedsit.
But for the women who fell into his hands, his legacy lives on. ‘He damaged us,’ says Elizabeth. ‘He destroyed our potential.’
After being discharged from Ward 5, she was unable to cope with her career in marketing and took jobs as a supermarket shelf-stacker and a cleaning lady.
‘It changed me. I lost interest in things,’ she says. ‘There was no way back to my old life. I am angry about what I feel I missed out on. I’ve lost chunks of my memory. And I can’t lay down new memories.’
Hilary adds: ‘It dulled me an awful lot. It knocked the spirit out of me. Taking so many drugs had a bad effect - by the time I was 26 I had ovarian cysts.’
In Australia and Canada, where Sargant’s methods were disastrously emulated, dozens of narcosis patients died. Those who survived were eventually compensated.
Survivors of the Royal Waterloo Hospital have been told by lawyers that the lack of paperwork and the amount of time that has passed makes it unlikely they will ever be similarly compensated.
But above all, women like Elizabeth and Hilary want to be acknowledged. They want to know how Sargant can have been allowed to get away with such monstrous behaviour.
‘People talk about the sleep room as if it was something from another world,’ says Elizabeth.
‘But we’re still alive. We’re still here. We’re still suffering from what he and his colleagues did to us.’

Christmas 2018

2018-12-27T10:38:00.003+00:00

The worse Christmas ever. In terms of my husband and my family.

But my friends that came were great though and I/we are so lucky to have them.

But.

I went into meltdown about three weeks before. Sadly just after we went to see my daughter. Drinking too much, having meltdowns.
But
I may have survived this, I may have survived this and got it together.
But
Then a friend wrote me a letter. Saying how much she thinks of me even dreams of me and the smallholding I live on.
I think of her too, often. But while I know her reasons and objectively I forgive her and get it.

But

She was the friend that I had to call for help. When she had a complete bi-polar meltdown in my house and the first part of it when driving my daughter and her son home . I was so scared for my daughter firstly but also her son and her.
Then it continued and she was sooooo manic, basically on a huge episode.

There was nothing I could do to talk her down. I have before talked people down off of a manic episode. But I talked to her all day and night for 3 days. I so did try. But I failed

So I had no option but to call what I knew would be those that would commit her to a psychiatric unit. i.e the GP in the first instance and then social services etc to get the signatures needed to do that to her.

But
If anyone actually knows or understands my own history they will know how hard that was for me to do?
As I first went into a psychiatric hospital at 17. And a Therapeutic Community at 26. I would not wish any of that on anyone. And while she had been in somewhere before for addiction I think, not ever a psychiatric unit and if you do that has consequences. And I knew my actions would result in those for her.

Since then I have tried to keep off 'their' radar. Their being those that can have that complete power over me and my life. And I succeeded.
But now, since HIV, in a way I wish I had help, any help at all!!

But I guess I could never accept it? As while some of it saved me it is also part of what also destroyed me.

So for me to contact anyone when my friend was having such a huge bi-polar episode was so hard for me.

But I felt I had no choice. What else could I do? She had to have treatment. If not for her but for her son?
And sadly, from my house she went into a psychiatric unit and I looked after her son. At that time I could not even walk without pain due to the accident.

But
I do not have any issue with her about that. I loved her and I had to do my best for her and I did do my best at the time for her. And her son.

But

She was the friend. But one that later, when I was myself totally frantic, because my daughter walked out after one of many arguments. And did not come back. And I did not know where she was for at least 3 months and did not know she was even safe for a month.

She knew where my daughter was and did not tell me?? Despite it was her I turned to when it happened for help and support., She knew where my daughter was!!!

In fact she had arranged it, where she eventually stayed! But she sat and told me that I was frantic was all in my head!! As I was mentally ill!!!!!!!!!!!!!!!

Yes I was and so had she been.

And I had supported her and all the way.

But I never disrespected her like that! She always knew exactly where her son was when she had that bi-polar meltdown. She knew he was safe and exactly where he was.

And I will always remember we had this huge bust up when she was in the unit!! Because I had to get her to sign over her child benefit to me? I did because contrary to what most felt at the time, I was struggling financially to make ends meet . Another story.

But
While my husband had a good wage. I only then had what I earned, Once from youth work and by then from web design. And he was at sea. I could not use his money, only he could. I had by then got him to do a joint account since my daughter was 11. I only then ever used it for emergencies and I was very careful not to use it except for emergencies and the bills I could not cover.

( Another story that one day I will write about. No he is not like this now. In fact i do not even think he cares anything much about money. I think all he cares about now is living his life and that I am OK. But sadly I am not, not OK. But having him do that to me, examine every thing |I spent, of my own money as well as his, for many years, while he was away...................... Did not do me me favors.,

Buit another part of my story and yet to be told)

Basically I still do the same. But then. I could not use it at all? So I had no money to keep her son. So I had to ask her to hand over her child benefit.

Which as what social services told me to do. So I had to ask her. It so did not go down well!!

I guess then everyone I knew thought I had no money issues., After all I lived and stil live in this big house with a man earning??

But
I was struggling financially every day to keep and feed us

But

I guess no one knew? Certainly not my husband.

But

I may not have done a great job of looking after him but I kept him safe and fed, despite I was so struggling myself. And I informed her every single inch of the way.

Even though at times she was so manic, even in the unit, she could not understand me

But

When My daughter ran way she was not the only one actually that I trusted that knew where Caja was and did not tell me?

Some parents of her friends who I saw as friends did too.!!!

As my daughter sofa surfed for a week or so. Therefore some of her other friends parents knew where she was too? And did not tell me either.

OK I know that she was not going to come back.
I know I was a mess and she found me unbearable and I was totally unbearable.

But to know where she was and not even tell me she was safe ???????????????

I cannot forgive that.
I have not trusted anyone as a friend since and that was when my daughter was 16.

But

I am sure she felt, just as I had.
That she had no choice. What else could she do? My daughter needed to get away from me?
So very sad for the both of us, but that was how it was

So for her but for my daughters sake? She did what she had to do

But

I honestly think if my daughter had had a different personality it would not have been necessary?
I do not think in the great scheme of things I am that bad??
There are far worse parents than I.

I do know that. through my job once but also in my life

And so may children still love and respect their parents. Even so.

But

Not mine

But

If she had ever shown the slightest respect, compassion or love or understanding towards me. Got and understood I was so struggling Tried to help me in any way at all? Cleaning up after herself may have helped. Helping me with the animals she professed to want and love may have helped. But also understanding I was a struggling and broken person who was only by then trying for her.

It may have helped and us both.~
But it was not to be.

She despised me and made sure I knew it and did her best to show that.

But

I guess she helped me survive?
As the only reason I do not or have not taken my own life then or now is because I love her.

That I cannot and will not do that to her.
Even before my own bother took his life - sadly we are all flawed in our family and all of us have to struggle in this life and often it gets too much . I knew I could not do it because of her.

My brother was not the first person I have loved who has committed suicide, by far. Someone who has been in asylums and theraputic communities and finds it hard to relate to anyone that has not known this pain will always know those that did and succeeded. So I am and always have been very well aware of how it affects those that are left behind.

I so know and I wont do that to my daughter and in fact I won't to my husband either or my sister.
My other brother? Right now i do not care as he has never loved or respected me although I have him and big time

But

If my daughter above all some respect or love, then or now, for me, this would have done.
If I had ever had that from her at all, all of this may not have happened?

But
OK that may seem harsh. I was the parent and she was the child. It was my job and L failed. I totally get that.

But
I loved her so much

That were arguments on my side because I was really disabled at the time - physically due to the accident, not mentally although by then I was mentally in a complete mess as well - did not do a thing to help me. Did not even do anything to care for her cats she professed to so love, certainly did nothing whatsoever to help look after the dogs or the chickens or any of the many rescue animals we had then. Not a fucking thing!!
I guess she did not ask to be born?
She did not buy into all the animals. Bu she did some. Some I only had due to her and she did noting of their care

But
I was not asking her to look after me?
Although sadly many children become carers to their parents when they are as physically disabled as I was then.
But I NEVER, EVER asked that of her.

All I ever asked was for her to look after herself.......... i.e her room, her personal hygiene, get herself to school or collage. Honestly that is all I ever asked of her

And perhaps help with the house, garden and the animals

But

Ok not all but some of the animals were only with us because she wanted me to have them.
And they had to be looked after. Barry was at sea. I was a complete mess. Due to the accident mainly and the fact my husband would not leave the sea, even though I was so plainly going under and by then I was drinking
And I could not cope

She was happy to work and for long hours as long as she was paid. And be hospitable
But she had a mother at home, who was not coping at all and needed her time and help.
And she would not help.

I would have even paid her what she was getting working if she had done a single thing, even just cleaned her room so I did not have to. But no that was not on her agenda

But

Even so?

Why was going to see our beautiful daughter if so traumatic? It should not have been. I so love that she has a life and seems relatively happy, despite me. I am so glad she has a life and an interest that is not chefing. As I know how hard that is. As actually I did it myself for a while. Not as long as she did and not working with famous chefs as she did

But

Now her life revolves around her rescue animals. Which is wonderful and I so support everything she does re that.

But
In that case

But

We now only see her about once a year, if that? As with all the rescue animals she has she cannot leave them for a night. And we live too far to come here and to travel back in a day.

That I so do understand.

As we still have rescue animals, we always have had rescue animals and have so few now, compared to the past

As we once had goats.............. chickens............so many chickens, has to be over a few thousand over the years, Ginnie fowl, ducks, Muscovies, ponies, horses .

But we still have 3 cats, 4 dogs, and 2 ponies

But

So for us to leave ours for a night we now have to pay £30 for each single night, and we do. When we can. And I so get ....................my daughter can no ever run to this.
But it is not easy for us either

To just visit my daughter costs us at least £150 or more and that is before any of our other expenses

But

Barry had seen her more recently but that was only because he made a chicken run for her for her birthday last May

And despite being not at all well and about to embark on Radiotherapy for prostate cancer, that he has suffered 9 years now, he still made it. And it was a beautiful chicken run.

But

He was not able to deliver it for a while as was not well and had to go for daily Radiotherapy for

But

As despite not helping or seeming to care one iota for the many rescue chickens, or dogs or cats or anything ( rescue snakes was another, that I ended up caring for., And I am not good with snakes) when she was a child, that some I got only for her. That she mostly ignored and did nothing at all for? I think in all her life with me she only ever took any dog out for a walk once!! She certainly never changed any cat litter box, or if she did it was because I made her, or helped me feed her rabbits ................... they died so I failed too,

Yet her life now seems to be rescue dogs, cats and chickens!!!
So ironic to me!!!!

But
That we see her at all is only because we go to where she lives. To the city she lives.
Usually we get a hotel. We have once stayed there when I just could not go any further nd thought it dangerous for Barry to drive the 4 hours home on no sleep, for one night when we landed at her local airport. And once we stayed for one night before the hotel room was ready. But that is all.

So what with our animal care costs and the hotel and the petrol to get there and food etc just to see her for a couple of days at all costs us over £600

And never before have we stayed with her for the whole 3/4 nights we are there

But

This time we decided to stay with her. Why not?
We only go there now to see her.
Yes I like the Spa and the Christmas market but that is for me, just an excuse to get to see her
But we are broke too at the moment and paying for a hotel as well as animal care to go, is out of our range . So we decided to stay there. They have a spare room, with now a bed ( they only had a mattress last time but thankfully they now have a bed in the spare room)

But

If anyone comes to stay with me I at least get in food for them, or at least nibbles, always make sure coming to my home is as special as I can make it. That at least they all have a comfortable bed ( well her partner did try to do that at least) make sure they , all visitors are at least, warm

Yes her partner so tried and he did a huge and good job

He cleaned the house. From top to bottom, He tried to make our room, OK. And the rest of the house. But my daughter???????????????

But my daughter? Did nothing .................nothing whatsoever!!!!!!!!!!!!!!!!!

Why not?? She is so lucky to have him.

She is a qualified chef and runs a pub now as a part time job to get her through Uni at her late age to do a degree. And in her job she is so hospitable. To all her customers. She so has that skill.

Pity she never uses any of her skills on us. But we are her parents and not customers.
I see a repeat of what went wrong between us all those years ago here??

She is happy to work and for long hours as long as she was paid.
But she is not willing to do anything in her own home? He partner gets it and I get that he does and loves her anyway

But

OK at least she let us stay.

But

It seems she could not even do warm!!!

I was so cold

But more.,

I had to watch Barry freeze. So much so he sat on their sofa with his hat around his feet as everything was so cold . Who never complains. He is ill with cancer and I am not. . As he was so suffering. He was so very cold.

So cold he was sat in her front room.

Freezing's his fucking balls off!

In her home

I get it. you are broke~

I have so been there so I do get it

Yet if you had ever even said?

I am about to put what I can right now
On to your card

My Story

2018-12-26T18:24:00.001+00:00

I have to tell the rest of or the whole of my story. And I do not know where to begin.
So I will begin on here.

You may think I have already told my story? As I have told my story of HIV. Well how it began anyway.
But that was not the story.

That was just the icing on the cake.
The final straw that broke me.

There is so much more and as someone so already broken, that my husband who was the only person who I have ever really trusted, was unfaithful and gave me the gift of HIV, was what broke me finally.

And I remain broken.

I now feel the only way to mend is to actually tell my stroy as it comes out. Without pulling my punches to protect others. As while those concerned may feel I have not. That I have not tried to protect them, actually I always have.

So from now on this blog is for me. I am not writing it for anyone else and thus it will be garbled.

As I will write it as it comes out, with no chronological order, just as it occurs to me and regardless of who else it hurts

2018-12-26T15:32:00.000+00:00

Today I saw a post re-posted on Facebook 6 times by those local to me, for a young women that went missing and was thought to be in Cornwall.

But the original post was from December 2014?? Today it is December 2018?????
And that it was was easily found. Yet no one bothered to look and just re-posted it????

That is sensitive for me, so I notice when missing person appeals are old and not current..

My own daughter went missing when she was just short of 17.
I had no idea where she was for over a month, even after that I had no idea where she was until a few months later.
She just walked out after an argument with nothing!! Just the clothes she stood up in and that was that.

Although it seems a few of her friends mothers did as she sofa surfed with various of them for a while and then one of my close friends did as she got her somewhere to stay.

And not one told me where she was?? I only needed to know where she was and she was safe. And any one could have told me and I thought they were all my friends too!!

But they didn't. Which still hurts so, much, to this today.
One of the things that further damaged me and make me not now to trust anyone.

It is part of my hurt about my daughter as although we have mended a few bridges, she is 29 now, we have never since had a good relationship. Nothing that could be described as a mother and daughter loving relationship.
And yes that was probably down to me, noting anyone else did. I think I was a nightmare at that time.
But yet I thought before she did this , that although not perfect, I was far from it and knew/know I am, that although things were bad. Yet I thought she loved me, I her and that we would mend it.

I was frantic. My husband, her father was at sea so I was on my own.

There was no FB then but had there been I would have put out all sorts of frantic appeals for sightings of her.

As it was I did on MSN, the only sort of social media then, and to the press and went to the police and social services and the local media and put up notices everywhere I could think of , asked all her friends and generally did the opposite of what my daughter wanted.

As she did not want to be found. And she had no intention of coming home.

So that I did what I did she has never fully forgiven me for that as well as what caused her to leave, that I publicized her as missing.

And thank goodness there was no FB then!!!

As she would never forgive me even more if my appeals for her to be found were up there and they were re-posted several years later.
As this was today.

I did post one about a friends cousin recently who went missing some years ago.
But I knew they wanted it shared and it was current, before I did.

So I wish people would check before they re-post/share such missing persons appeals.

Memory seems to have gone

2018-04-25T09:29:00.001+01:00

Posted this somewhere else . As in such a state today with my memory, could not even negotiate Facebook today.

And that is REALLY worrying. As been on Facebook since it came to the UK in about 2004?

So it is now second nature to me now and as easy as just living.

I am so VERY worried about my memory now.

_________________________________________

Not sure I remember even my name right now.

Had a bad few days re my memory

I often do but this was so really worrying.

This week I have had a whole week of health appointments.l That I have carefully written down, in my physical calendar., on my Google calendar, on my phone. Yesterday I knew I had one then, another today and another on Thursday.

Yesterday was the first day in over 2 months I was allowed to drive, since my hand operation. So was determined to do it all myself. Drive myself, remember myself, and not rely on Barry.

He has his own health issues and he does not need me to be so dependent.

So I got there, and on time. For what I thought was my 3.50pm diabetic nurse appointment, only to find I should have been there for my 3.10pm doctors appointment to review my meds.

I had got the times right but had transposed the appointments???

Thankfully our HIV medications are separate. Not issued by the GP. But every 4 months by the hospital at the HIV clinic.

So at least I have them.l

But only because Barry has HIV to and we make the appointment so we go together and he drives. If I did not have him. I may well miss that or get it wrong too.

But re my routine meds and my GP appointment. I had missed it?? I had missed my doctors appointment and now I have to remember that I had to go back today for my diabetic nurse appointment.

But have to see my doctor as they will not issue and more repeat prescriptions for my regular meds until I see a doctor? Blood pressure, statins, pain stuff etc.

So while it was a was a wasted trip, I thought at least I can book another appointment for the one I'd missed while there.

So I tried but told I cannot book it there.

That the only way to get even a regular appointment at my GP is to ring in at 8.30am and make a routine appointment?? I had had this appointment booked for over 4 weeks. But now it seems you cannot even book a routine appointment, face to face, while in the surgery.

I also had another, very worrying, memory loss while there.

I had to put Barry's repeat prescription in. And collect my neighbours medications as he has had a stroke and cannot walk further than a few yards and cannot drive atm, so we do this and a few other things for him..

And I forgot!! How could I forget this???

I was half way home before I remembered and had to go back!!

When I got back, I had to give his name. To get the prescription.

So having forgotten it once before - my memory loss is not new but worse now -

So having forgotten it before I had rehearsed his surname, Grenville, so I could get it right and pick up his meds.

So I said can I have Mr Gr********'s my neighbours medications. They asked me his address, and I gave it OK - I should as only lived next door since 1985!!

But then asked me what his first name was............................

I could not remember it!! I TIRED AND I TRIED?

But my brain just did not compute. Yet he is my neighbour.

My only neighbour??

And one of us pops into see if he is OK every single day, since September when he had the stroke. And we do what he needs and so I well know his first name. ~Yet no way could I recall it when asked ???

And yet I thought I was doing so well??

Well to just get there and remember I had to pick up his meds anyway. Yes I had got my own appointment wrong. But was happy I could at least do this for someone.

Thankfully the pharmacist on yesterday knows me, and very well. She may be should not have, but she saw my problem and whispered his first name to me, for me to repeat and get his meds.

Thank you so much C***

But before I went yesterday, I thought i was doing so well.

As before I had to leave for the health appointment I was so trying to be so together.

Got up at 6.30 am, my usual time.

Then cleaned cupboards in the kitchen. Cleaned other things that so need doing. And are rarely ever done. I was determined now my hand is usable to start to catch up.

And went up to the freezer in the shed to get stuff out for yesterdays evening meal.

I thought I was so on the ball!

But the freezer was so very full.

Has to be now living where we do. Living where we do I have had a very big freezer for years. As I do not want to go to the shops every 4 days or less, if not going in the direction where a shop is.

I guess for some it may seem the shops are not that far. About 5 miles to the nearest supermarket. Maybe less that 3 to the nearest shop at all?

But all require me to drive too.

But now I am retired, I do not routinely go out to anywhere on a regular basis. When I did I used to get my shopping on the way in or the way out. Even when just doing the Yurts I used to combine my own shopping with shopping for the business.

But now being on a fixed state pension, as cannot afford the fuel for unnecessary trips.

So as I only go out rarely during the times shops are open and try to combine any shopping with trips with going out for another reason. The freezer is so key to why we can continue to live here.

So I delved through the freezer in my outhouse yesterday to find something for our dinner. Found it and made a lovely Jerk Chicken and rice and peas. For us and a friend staying here atm.

But the freezer in the shed, it is full!!!

So I had to take a lot out to find what I wanted. So I put a few thing behind me on a ledge.

Got what I wanted, took it down to the house. And at least when I got back from my failed attempt to see my doctor I did cook a really lovely meal with is. Not just for me and Barry, but for a friend too.

But I forgot totally I'd left the stuff I took out on a ledge behind the freezer??? Got to have been over £50 of food?

I remembered at 3am this morning!!!!

It woke me up and I have had no sleep since.Went up the shed where the freezer is to check and yes.................. I had left all this food out!!

So since 5.30am I have been cooking!!

To try to rescue this food? Just cannot afford to waste this food.

And I now feel so totally awful, dizzy, tired, in pain from my ankle, and back, and hand and a lot more....................................................................................

So while I made my 3.50pm appointment for the diabetic nurse today. The one I got wrong yesterday. But only because Barry reminded me and drove me to it!

I could never have driven myself today. So glad he could.~ But he has cancer.

It should be me looking after him right now!!!!

But the reality is it is him looking after me.

You may think this is funny.

And it is.In a way I do also.

But my mother had dementia. And many in her family.

Living with HIV I am more likely to get some form of it.~

So its not funny as I am very scare

____________________

I still have such very good recall of things 15-20 or more years ago.
But sometimes I cannot remember what I did just now?

Given the history of dementia in the female side of the family.
And given that I live with HIV and not diagnosed until I was very ill, CD4 75 , and ill . Yet hubbies CD4 was 8 and he was more ill, but his memory seems OK

So may not be related ??
I am so very scared at the moment

I am turing into a grumpy old woman

2018-04-25T08:07:00.002+01:00

I'm turning in to a real grumpy old woman.

Was not at all happy when a woman at a gig on Friday night picked dog hair off my jumper while in the queue for the loo. Yes it was a bit of a mickey take but I should have been more graceful rather than giving her a mouthful.
And not had an argument with the woman in Lidls that barged past me at the exit and nearly tripped me up.

As this is such a small community this end of Cornwall. So could meet them both again.

So last friday night we went out to see a reggae/rasta band in Falmouth. MACKA B & The Roots Ragga
They were good. The real deal, actually all black rasta doing their own genuine stuff.
Most of the Reggae/ska bands we get here in Cornwall are of the ska/rudeboy/white/skinhead derivative, sometimes with one black person often not. Who do only covers. Even UB40, both ones, Ali's and his brothers one, that we have seen here do mainly covers.
It was great to be able to see this band here.

They were good.
But I had not gone out except to see close friends since my hand operation nearly 2 months ago and not to see a band. Have put on a few pounds due to inactivity, so could not find anything to wear I felt OK in and did not highlight my big belly. So choose a baggy dark Grey tunic with black leggings and a thin black baggy cardi that covered most.
I do take pride in my appearance when I go out.
I try to make the best of what is now crumbling.
But we all age, or will one day. And it is hard sometimes.
All my clothes were clean. All had been washed, put back in my wardrobe and not worn since. I am aware that many of my clothes have animal hair on them. I have 4 dogs, many cats and ponies that are shedding their coats for the summer right now.
So as well as washing my clothes I also spend time de-furring them, before putting them away..
Most at the gig were younger than us, not all but most.
But that's OK it is often the case now. But does add to my feeling self conscious at times.
But I was OK, until I went to the loo and into the bright lights of the toilet.
The 'ladies' was full of mostly younger women, some very high.
But all OK.
Stood in the line and the younger woman behind me - well not that young maybe 35+ but that is still at least 30 years younger than I!! -
Started to pick at the back of my black cardi??
I turned a bit bemused about what she was doing and asked what was she doing and she said 'picking off the dog hairs'!!
Well maybe she meant well? She did add I love dogs??
But .................. another time I would have laughed, had a bit of banter with her. I think that was what she expected?
But it spoiled my evening. I gave her a mouthful.
Yet I think she probably meant well so I now feel bad I did now.
But why do I have to be so unfortunate to have someone do this to me when I am feeling vulnerable?? I would have preferred it last night if she had ignored how I was dressed and the hair and just got on with her own business. As I was trying to do mine.
I looked at my cardi when in the booth. For me the animal hair was very minimal. I'd missed a few but only a very few!
I'm off to Porthleven Food Festival today.
Have no idea now what to wear?

Maybe I will just go with the flow and wear one of my ponies turnout rugs?

Barrys prostate cancer story continues

2018-03-01T13:47:00.004+00:00

Is anyone really interested. I doubt it but I m writing this for myself.
Anyway re Barrys prostate cancer treatment.

When he got there yesterday, they said they could not do the radiotherapy straight away as planned. Because of two reasons.

One because he had Brachytherapy, originally, which is radioactive beads inserted in his prostate..

And they are now unsure with those in place - they never come out, in for life unless you have your prostate removed - that they can do radiotherapy?

Even though the noduals are not in the prostate but in the abdomen they have to be careful that the radiotherapy goes no where near those.

So it has to be targeted very precisely. And they are not sure the equipment they have in our only hospital in Cornwall can handle that?

They are going to consult with all teams involved and if not he either cannot have Radiotherapy - the best option for his type of cancer, or he is going to have to have it outside of Cornwall.

This could be problematic as once it starts it is every day for some weeks, and the nearest hospital with other equipment is a 2.5 hour drive away and truly even Barry could not drive that far and back every day while having this. He would have to stay somewhere, and we just do not have the money for this.

And it could be they can't do it there, so it could be London.

That is a 6 hour drive.

But that could be a lot better as at least my sister lives there and could put him up.

They are consulting the various teams about this and that will take a few f weeks before we know.

But the other reason is that they are worried that Barry is on ARVs.

That according to their - outdated I feel - information, on some ARVs, but also those with HIV cannot have radiotherapy?

Anyone know anything abut this?

BUT!!!!! I know that this only applied to the older drugs and just due to some research that was not proved and that you cannot have radiotherapy when HIV+ has long been disproved??

I know because we had this fight before.

They said the same thing a few years ago when we fought to get him Brachytherapy https://www.macmillan.org.uk/information-and-support/treating/radiotherapy/internal-radiotherapy-explained/brachytherapy.html

The same happened then!!!!

They said he could not have this. Yet it was then the best treatment for how his cancer was then. But we had to fight for it, because the local team thought it was not possible for those HIV+ and on ARVs.

I had to fight for him to get this.

I had to find more up to date research and post it to them, get my niece who is a consultant in London to write to them, and get them to consult with a London HIV specialist.

I am very upset we are going thought this yet again!!!

They did say that they do now know now that the ban on Radiotherapy only applied to much older drugs.

BUT!!

But Barry is now on Odefsey. That apparently they had never heard of???

And have no information re that and any type of radiotherapy!!

I am pretty sure that there is no problem with that!!

As it s exactly the same as Complera/Eviplera. Except it contains the newer Tenofovir and that is fine with Radotherapy.

And Odefsey the drug Rilpivirine is in derivation for the same family as the Efavirenz in Atripla he was on when he had the Brachytherapy.

I guess I should be pleased that if they do not know they are doing their research?

But all this will take time. Were told could be as much as 8 weeks!!!

And at least, unlike last time, they are researching it, rather than just telling us as they did 5 years ago or so, that Barry just had to have his prostate removed and be on hormones for the rest of his life.

But honestly I feel they should know this stuff.

Before he attended his appointment??

They say they have hardly ever treated anyone for this cancer here that also has HIV and is on ARVs???

I find that hard to believe??

________________________________________

So it is now a waiting game for us.

Could now be many weeks before he starts any other treatment, except for hormone treatment, if he does

And every week counts. ...................while they consult and educate themselves.

Otherwise his only option is to be on hormone treatment for the rest of his life, like his dad and his brother was.

His dad died of it. So did his brother not long ago . It does not work forever.

And hormone treatment is not good. Especially if for the rest of your life

It is true that when originally diagnosed, if he had agreed then to have his prostate out, this may not have been now occurring.

But It could have, as his cancer is very aggressive and so could have already been outside the prostate but too small then to small to detect,

And the scans he has had recently did not exist then.

But ..............

He would have been lucky to escape urinary incontinence, like his brother and his dad.

But more of a concern for him, almost certain impotence.

Maybe we are shallow. But have a good sex life and it is very important to us both.

But I would have forgone this if that was the only option.

However Barry said he would rather not have it and would take his chances. Have have a few years, with me and some normality, and then die.

And actually if you knew Barry?? He is not at all an emotional person ( I am but he is NOT and not at all)

He s not given to saying anything he does not truly mean.

He meant it.

But due to me basically, we found he could have Brachytherapy and not then prostate removal and then hormones.

It was not a hard procedure to have and it gave him ( us) a few years

It is too late now for a Prostatectomy as it has spread.

But hormone therapy as he is on now also can also make you impotent - more than 85% + and grow breasts, and feel ill and emotional etc.

He has some of that - breasts expanding, irritability and feels unwell - And he has shingles right now that we have no idea if related.

And he is so hating it and so hope this is only until he can have Radiotherapy.

I will fight for him to get what he feels he needs.

It's not all about me.

2018-02-28T01:30:00.001+00:00

Barry has prostate cancer. It was in remission but now it's spread.

He is on hormone treatment and starts radiotherapy very soon.

It's not about me. I don't have cancer.
But he does.

And I have absolutely no one to talk to or who understands.
But mostly I have no one.
He does not either.

___________________________________

That above was a cry from the heart when feeling down last night. I am better this morning.
However

I'm really feeling down at the moment and it is difficult as it not 'all about me' or about me at all and I have to support my husband. But my problem is I have no one to support me. Not in person. I only have people online.

12 years or so ago I had many actual friends, who lived nearby. Or so I though.

Now I have none.

No one even to talk too from one week to the next in person, except Barry, and he is trying just to cope so I cannot expect support from him, understandably.

And I guess it is selfish to think about me at a time like this for Barry.

His prostate cancer was in remission for some years but has returned and is now outside the prostate

He has been on hormone treatment - daily tablets and weekly injections - for over a month, to shrink the nodules before radiotherapy and perhaps chemo..

And has shingles is irritable - at least he has not had uncontrollable bouts of crying and emotion that we were told was a possible side effect - and is not feeling well.

Today he is off to the treatment center to discuss the radiotherapy which will begin in the next few days.

I am so scared I will loose him.

And he has been my rock for so many years and I am scared I can't be his rock now.

But I have to be. It is not me that has cancer.

I think may have been once a modern day slave. In the 1970s in Cornwall anyway.

2018-02-25T11:17:00.004+00:00

My story of my time in Penzance, Cornwall, so many years ago.

Don't bother to read it unless you are interested and have time. As it is far too long.
I just wrote it for me ......lest I forget. As now I forget so much

______________________________________

I found on Facebook pictures of the Western hotel in Penzance, now long demolished,

I worked there!!

I cannot remember the exact time or year. But it was between 1969 and 1975. Maybe as late as 1973/74?

But all those years it is mostly a total blur as to dates.

I do know was in a total state mentally during those years and I was drifting and often homeless on the streets, often in London. Or living in squats or doing seasonal work which provided accommodation and food. In between going back to mum briefly when I was desperate and had nowhere else to go. And in early 1970s doing a course in Pattern Cutting and Design at the LCOF - London Collage of fashion.

Then subsequent work in very dire conditions in factories – mostly in the rag trade after I qualified But as that was very dire so also in boutiques………which was only marginally better!

You would think boutiques in central London would be good money at least?
Maybe for some, but not really then for the likes of me??

As I depended entirely on commission on what I sold to make enough money to live on.

We only had a very small basic wage in the places I worked anyway, not even enough to get you to work daily if you lived more than a walk, nor enough to feed yourself.

So at one point I even moved to live in a cupboard so I could walk to work when I worked in Kensington Church Street - and mostly I did not earn much in commission. As I only got the jobs because I looked very good then and I looked the part.

But then I could never be bothered to suck up to anyone just because they were buying something!!!

So did often did not get the commission enough and so I could not afford to live

So a lot of the time then I drifted in and out of work and in between I was a homeless drifter. And when you live like this, life can be a blur.......

And while I cannot remember exactly the year somehow, at some point, I came to work at the Western in Penzance

I found London exciting but so very tiring and could not live with or near my dad for long from about when I was 15, and consequently was sectioned in Park Prewett asylum https://en.wikipedia.org/wiki/Park_Prewett_Hospital.

As it was then, and nearly died due to the abuse I suffered there.

I had there what was then called DST -Deep Sleep Treatment. An artificially induced coma

Now long banned almost everywhere. And in some countries killed young people like me.

https://en.wikipedia.org/wiki/Deep_sleep_therapy

I feel so very lucky to have survived this. Relatively in tact? But it did take its toil on me Even now. Which is still very sad, for me anyway.

I often drifted wherever I could and often took seasonal/holiday jobs abroad and in the UK. As long as they provided, food and accommodation.

And the Western in Penzance was, briefly, was one of them.

And I cannot remember the exact year or the time? But I think I came down in April and may have been 73/4 and it was supposed to be a job that lasted the season.

But I can so very clearly remember the details. Sad fact of getting older that this can happen. I remember vividly the details of years ago, although not the dates and cannot always remember what I had for breakfast!!

Or this is my situation and this is very worrying also as my mum had dementia, as did others in our family. But theirs started a lot older than I now am. I am only 65.

I do however remember clearly that I got the job through a seasonal job publication around at the time and then by letter and then by phone in a telephone booth. As I always did then.

There was no internet or mobile phones then so that was how you did it. I always preferred seasonal jobs abroad and had a couple of such jobs during those years. I will maybe write more about those too, one day?

But then I was homeless and totally broke at the time, fancied change, did not want to go back to my parents and my brother had bought a cottage in Mousehole near Penzance so I figured if I got desperate I could always go there? Which indeed I did for a short while later.

I got the job and used the last of my money to get the train down rather than hitching, as I was very tired and cold, and hungry and expecting to be fed when I got there. I was not!

I was expected to work the season.

I got a room and was supposed to get meals?

At the time a place to sleep and to be fed was good enough for me.

And any money was a bonus. I was to get a small wage. I did not ask what that would be? I was just happy if I had a bed and was to be fed. But I guess did expect about £6 to £7 a week, but I stupidity did not ask what I would earn?

At the time I just wanted to get out of London and go where there was sea and nature and where I felt at home

The Western then was run by a family that I could see even then, were struggling to hold it together. And were not.

It closed not long afterward, and I am told was later demolished? Must have been a tragedy for them, as I could see they were on their uppers even then. They had a daughter and I think a younger son and I could see they were so stressed and struggling to keep it together. I wonder what happened to them?

I was a general dogsbody. I cleaned the guest rooms – made beds etc - cleaned the bar and the public areas………. on my own, I cannot remember having anyone helping me with this?
Except with the food as the owners did the food and I only helped with that.
I helped to prepare breakfasts and other meals.

But they locked the food up afterwards and never offered me any food???

In the afternoon I ran the outside ice cream booth when the owners had an afternoon kip/rest before starting again doing evening meals and running the bars. As it was a big hotel and there was more than one bar. But I did not get a rest and I too helped with the evening means and helped run the bars and I had been up often earlier than them. Cleaning the rooms and the bars

Before they went for their rest they counted the ice creams and lollies in. And then I could not leave, not even to go to the toilet, until they got up and counted them out, I guess to stop me eating them?

But even though I am terrible at money and maths I was sooooo hungry and hunger and survival can sharpen your mind I must admit as I was so hungry I sometimes managed to fiddled the money and had an ice cream or ice lolly or two and sometimes customers bought me one. If I talked to them entertainingly and answered their inquiries about the area, sometimes I struck lucky. Some even gave me a tip!!

But I am so sorry to any punters I may have served there as many times as I also carefully opened the top of ice creams and lollies and had a lick or more, then carefully closed the cardboard so it was not noticed.

I was sooo damn hungry! I am sorry now. But survival is survival.

I also worked behind the bar, and the folk club bar. I think may have been underage to do that, maybe not if it was 1974? but no one asked anyway - was up by 6am and worked until they did not need me anymore.

But no one remembered to feed me???
Or offer me any food at all!!

The bedroom I had was by default OK. In fact a large room to myself which was more than I was then used to. A double bed, but damp, and just a blanket, I used my sleeping bag I had brought with me. It was not good enough for hotel guests as in the ground floor wing or basement, but OK for me and as I was about their only employee at the time I had it all to myself. But had nothing to eat and worked very long hours.

And for over 14 days I could not buy anything for myself as I’d used the last of my money on the train and they did not pay me anything for over two weeks.

In those days it was always what was called ‘a week in hand’.

You were supposed to get that week back when you left.

I never got it back when I left. But to be fair I did not ask. I just legged it one night when I had had finally had enough.

Once I remember vividly I was so very hungry that while helping to make the breakfasts I nibbled on something off the preparation table, some bread perhaps? The owner’s wife was so very angry…. hygiene she said?

But what about my starvation, I thought??

She was furious. And I was such a dork then it never occurred to me to say she had promised me my meals and I had not yet even had one??

I cannot ever remember getting any meal there, not once?

In fact, I fainted about 10 days into the job while vacuuming and cleaning the bar.
And that was not me in those days. As then I was so very physically healthy.

It did scare the owners though as I went down like a lead balloon and was afterwards so groggy.

So they did send me to the local doctor. He prescribed me an iron tonic. But no one thought to ask when I had last eaten?? .......I had not for at least a week or more??

There was no minimum wage then and as long as I got accommodation and food, and a small wage, that was usually then good enough for me.

Well it was as long as I got fed. But I did not get fed there!!

When I got my wage at the end of two weeks, it was under £4. Which even for then was quite dire. OK if I had had good meals it would have been OK, but I did not. So out of my wage I from then on had to try to buy enough food out, to survive on.

Perhaps this cannot be classified exactly as slavery? But I de to this I therefor know and for sure that modern slavery has to be so very real. As sadly I got pretty close to it myself then. As that was what it felt like. And if it happened then, I know it is happening now.

And that is not the only incidence of it I went through at that time.
It is very unlikely that a white, young women who is a UK citizen would experience this now?
But there are so many other young women and men, from other countries that may.

The one saving thing of working here is they had an amazing folk/music club in the hotel once a week. On a Friday I think? And not the folk clubs as is now.

This was a very big thing People came from miles around. And it was fun and was happening.

Where I often worked the bar – I doubt I was of age to do this, but they never asked my age and the owners did not like the music so left it to me and at times their daughter, also too young - and I saw so many.

So many, some local, Barbara Wootton, John The Fish ( real name John Langford who was once a friend on Facebook but seems to have removed himself for my friends list?) Mike Silver, Tell Mann. And some that became more famous like Clive Palmer with and without the Incredible string band, Wizz Jones and ( l was later in that year was invited round to Ralph McTells house as he lived near and you may not get it but as he had a number one record out at the time, played all the time on the radio then – Streets of London - that was amazing for me to be invited to his house. I was after all a very young and then very impressionable young woman.

Anyone remember the folk club there? It was while this existed I worked there. Yet it is not mentioned in any page I can find about the history of folk in Cornwall. The Railway which I also went to is but not the folk club in the Western http://kernowbeat.co.uk/railway.html

Except one post on one group from someone that mentions it in passing?? Yet the folk club there was such a very big thing then.

But the folk club did not help me to eat!!

So one night I packed up my stuff and in desperation I phoned my brother who had a cottage in Mousehole and I asked to stay there.

He said yes.

And I went there. And by coincidence a boyfriend at the time, and indeed then the love of my life and was for many years, before then and actually after.................. Richard was coming down to Cornwall for a holiday and I invited him to stay in my brothers cottage with me. And he did.

We had such a lovely two weeks or so there. I will never forget it,.

It was such a lovey time for me. I do now so realise now I was just available and was just there.

Richard left, he was only on holiday after all but I was left with the consequences.

As my brother got complaints from the lady who lived upstairs.!

A sitting tenant as my brother had bought her part of the cottage too but she had tenancy of it for life. He honored that totally.

But apparently even though so deaf that she had her telly up full blast, which bothered us but we would never complain, she could tell that I had a visitor? And that we were having sex?

Well indeed as I went up there and introduced myself and Richard to her – and no she could not hear any details.Yes we were but no way could she hear it or be bothered by us.

But she objected to the fact that I had a man staying with me and I was not married to him? And she was apparently appalled???

She did not say this to me but phoned my brother and said it to him??

And my brother basically chucked me out. Thank you, a lot, John!

He is now dead as he committed suicide and I guess when that happens, even years later, you are not supposed to say how those now dead but once very much alive ….. once pissed you right off?

But my brother John did…then.

And my dad used money he did not really have, to help build my brother’s house just a bit before.

Yet the only time I ever asked him for anything, just to stay in his little cottage in Mousehole, just a little bit longer. He said no!

So I was on the streets. Yet again!!

Ironic given the Ralph McTell, Streets of London, was basically a backdrop to everything then and I had come to Cornwall to escape being homeless on the streets of London??

And this song was on every radio, played in every pub??!!

But that was how it was then. To be with someone you were not married to, was then just not on.

I was then again homeless, and now on the streets of Penzance!!!!
There was no song about that was there.

And Ralph McTell then lived in Penzance!!
He must have had his eyes closed to the homelessness all around him as I was only one of very many.

(Homelessness is not at all new. And not ever just confined to big cities)

However I found, from the many others then also then on the streets in Penzance.

That you could claim what was then known as tramps allowance. If you reported, in person with all your belongings, to the unemployment office daily.

You could claim it. I think it was about 52p a day?

Not much? But it was a total savor for me at that time and for many others.

Even if I had wanted to go back to my parents, or back to London, and I did not. I had no money to do so anyway and while I could have hitched the 250 miles, for me to be near my dad was so destructive for me then and did not know if I would be welcomed in London by anyone?

So I stuck it out. Slept in alley ways on the beach etc in PZ and a few times in the train carriages that were then left over night in the sidings past Penzance. At Longrock.

Once or twice we struck it so lucky. As a first class and buffet car was left in the sidings…. such luxury to sleep in.

Once we really struck it good as got a buffet car that had food and booze in it!!

I did not drink then. But that night I sure did.

Whiskey, gin, wine, the lot. A very fun night I will never forget. Plus the dope and other drugs etc.

I then saw an advert posted for workers for what was then called Kenegie Country Club in Gulval.

They needed staff. Now it is http://www.kenegie-manor.co.uk/

I just walked up to there with all my belongings in my rucksack and turned up on their door and they took me on.

They put me up in a tiny caravan that had 5 of us sleeping in it, including the cook ……who was a total anorexic, apparently unusual for a guy but he was? Nothing passed his lips but milk and sometimes beer. He was skeletal.

Yet he was in charge to cook all the food there what was then for at least 70 to 100+ people a day?? Yet he did not ever eat himself ?

But it was a bed. And I got food!!!!!! To be fed was very important to most of us then.

And thankfully they were very careful to offer their staff three meals a day.

We got toast and butter and jam, in the morning, after we had served the breakfasts, a small meal of left overs after we had done the lunch.

And then we even had a couple of hours off then and then came back for the evening meals serving and for the entertainment after that was finished at about 10 to 11 pm we could again have a meal of whatever was left over.

And they paid me £7 a week. Such a huge improvement!!

Well mostly, as they would deduct from that if they saw anything wrong and I was not good at serving people. But they were fair and at least I had food and a bed??

They were very good employers for the time

In fact I got demoted to kitchen porter, even though that was then considered a man’s job.

As I was so very clumsy. I have dyspraxia. Which apparently goes hand in hand with dyslexia, which I have a little but also dicalculi, which I have a lot.

And t serve it was a juggle of silver service for the veg and you had to carry the starters - mainly then soup – and the mains around to the tables on a sort of 5 tire wire carrier that you had to balance.
I could not do it!!

Sadly, one night I tripped and dumped the soup in the owners mothers lap!!!

At least they did not turn me back out into the streets......... They made me a kitchen porter which I in fact preferred even though my wage dropped. I then got about £5 a week.

I worked with the man that fed the gigantic dishwasher who, I guess, had Tourette's?

Only we did not know this name for it then?

He punctuated every rack of plates or cups or whatever he loaded, with a stream of profound swearing. That even though I had lived on the streets I had not until then heard quite such profanity?

And even when off duty he had what would now be known as ticks and constantly swearing etc.
But he was a very lovely guy. Who came with us all even to the Barn and other clubs.

One of my jobs as a kitchen porter there was to take the remains of breakfast out to feed to the pigs they then kept.

Even then I knew that feeding bacon to pigs was somehow so very wrong?

But we had some fun. Somehow.

We somehow fitted in going to the Barn club and other music venues around this end of Cornwall after we had finished work. We used to also sneak into the outdoor pool a night – they have an indoor pool now. But then but then only an outdoor one – even when really cold we would often swim at night.

But some tragedies too.

A suicide, of a fellow worker that I have to say sadly we hardly noticed. So very quiet, but now will never will forget...........

And a fellow worker, a receptionist, that we had thought that although quite thin, though had a big tummy.

Suddenly gave birth!!! In front of us pretty much basically. Even still she did not accept what had happened?

I then left there and got a job at the Wimpy bar in Penzance.

Cannot exactly remember now why I left, but guessing I got sacked for being too bolshy and not towing the line?

I had nowhere to live so even though autumn was coming on I went and bought a small tent and put it on Eastern Green. That was then basically a farmers field and also a camp site in the height of the summer but he let a few stay on after the main season.

But I was not alone in leaving. It sort of comes back to me as I write

I left with another woman. She also had a got a job in town. She left before me though.

I only had a thin ridge tent but my life and sanity was saved by a couple camping next to me, that later would probably be called ‘new age travelers’?

But then there was no name for them and how they chose to live. They had a young child and large van that I think they slept in and a big green ex army tent, with sofas and a wood burner...................

So I lived in my very cold tent and worked at the Wimpy bar in Penzance and spent evenings warm in the green tent next door. But the Wimpy paid me a decent wage for the time and fed me.

I used to wash my knickers and other essentials in the sea. Down om the shore, next to the road, opposite what was once Eastern Green, there is a sort of bridge with two arches?

When I drive by now I still can see them. It always brings a tear and indeed a joy to my eye. But also sad as no one will ever understand why, now. So I never bother to explain.

I used to sit under there and wash my knickers and sometimes my body when living in a tent a Eastern Green. The camp site then had toilets but no real washing facilities and no laundrey facilities

And then there was sewage flouting around in the sea there - including turds and tampons etc - so I used the fresh water stream that flowed under the bridge for the actual washing.
Actually it is a fond memory and I love the place I even once painted a picture of me in that place washing my pants!! Long gone now.

I was very well known locally when I later worked at the Wimpy in Penzance. Even then I would often have coloured hair and like I do now I wore a lot of silver rings. This was very unusual then.

I did leave, probably when it got too cold in my tent or I had had enough of living like that.
And went back to London to sort myself out, (I was lucky to get into the Henderson Therapeutic Community, https://ezitis.myzen.co.uk/henderson.html http://www.communitycare.co.uk/2009/04/27/how-therapeutic-communities-can-help-rebuild-lives/)

Which I feel if the Henderson did not save my life, it did save my sanity and taught me how to live in this world

And I then went then to get educated and qualified and the rest is history .

Although I never thought I would come back to Cornwall - a whole other story why I did - I have now lived here again since 1985

And I will never forget that, when I was back living in London, for some years, at a concert a guy came up to me and said I remember you, you served me in the Wimpy in Penzance!!!

What is the chance of that?

There is only so much you can say about HIV

2018-02-25T09:44:00.003+00:00

Yes, there is only so much you can say about HIV

But there is a lot I can say and seem to need to say about my life pre HIV

Which is probably why I don't write anything on here anymore?
I do occasionally have something to say that is directly about HIV. But that is often very short, not long enough for a blog post so I just put it in Facebook. And Facebook has the advantage that if it incudes information, which it often does, more see it on there.

But find myself writing long rambling posts on there about my past
Maybe its also an age thing but all I seem to want to write about at the moment is the past?
About things that happened to me over 30 or more years ago. Which few if anyone would be at all interested in except me. Even my husband has no interest!! It so obviously bores him!

Then yesterday when I was, yet again , writing a far too long status update on Facebook that was again about my past and was just too long for Facebook and so deleted it. And then had this realization that while inappropriate for FB, it was totally appropriate for a blog post.
But I was not writing there sorts of things here because I started this blog to write about our journey through HIV.

But I now realise that every post does not have to be specifically about HIV!
It is my journey and if what I need to write about is my past right now then why not?

What a dork not to realize this before!!!!

And writing it as a blog post means that it only goes to those who choose to read this blog, if anyone? And is not going to the many 'friends' I have on Facebook, many of whom are quite random; many who I only know due to HIV and would not be remotely interested in my ramblings about my past.

To be truthful I do not even need anyone to read it anyway. I just need to write it down.

And in fact it is indirectly about my Journey with HIV.
As the reason I seem to want to write about and examine my past is to understand why I am so traumatized by now having HIV. That basically I am suffering PTSD due to it and in fact as I write my memories down I often realise I already had PTSD and have done for many, many years, due to my past experiences. So trauma has built on trauma.

This does not mean I am more traumatised than others who find they live with HIV.
So many are. I speak to people everyday in the HIV support groups that are so distressed, tramatised and indeed some distraught and some very sadly, suicidal.

Some only recently diagnosed, some longer but less time than me but in fact many that are longer term survivors still have trauma and some new trauma due to surviving when others did not.

In my view and now experience, trauma and HIV often goes hand in hand. If not for all it does for many.
Probably this is why there is such a high incidence of mental health issues among those living with HIV.

But some seem to have escaped it, or have managed to work through t and out the other end.

It s so that I am a lot less traumatised by the fact of my HIV than I was and every year that passes it gets better.
I hope ne day to eventually work through it and come out the other side as others seem to have.

But I do seem to do far more work on it and I am having counseling again at the moment to look at this. And if looking and writing about my past is part of this then so be it.

WAD - World AIDS Day 2017

2017-11-25T16:29:00.002+00:00

It will be WAD – World AIDs Day – 2017 soon.
Most issues have a week- we only have a day.

1st December!!

I feel I have to say something, if not for anyone else but for myself.

When I was diagnosed with HIV and indeed my husband before me, little did I know I would enter a world that before then I did not know existed. A world that few do, unless they live with HIV or are directly affected because a partner, friend, family or a loved one does.

I stupidly thought I did know.

As I lost a friend to AIDS in 1984, who was a long time before that and before he came out, was in fact a once lover of mine. He died before the wonderful meds that keep us now alive existed.

And then I qualified as a youth worker with a specialisation in sexual health.
Probably due to his death and how it happened affecting me hugely, so when I had the choice in my work as a youth worker, I always worked with HIV issues.
I was involved in running HIV awareness youth workshops in the 90s. I worked to do this with those then living with HIV. I still have the paperwork and the handouts – so little we knew then and then there was no effective medication.
I also helped organise and run HIV awareness events at the then City hall in Truro, Cornwall in about 1993.

But I did not get it, even so.
But my mistake was in thinking, when I was diagnosed that all had changed now. The awareness attempts I had been involved in, In terms of stigma, and awareness had worked, more than it had.

And in terms of those that live with HIV dying before their time, in terms of suffering, hardship and the daily challenges of those that do was a thing of the past.

I thought by the time I was diagnosed it was a different ball game. That the meds totally worked, for all, that stigma had gone, that it would be OK for me to be open – I could not feel I could do anything else but be open anyway due to my friend who was and died in the 80s, but I thought it would be a very different and OK thing for me to be so.

I was wrong.
It is different, but it has not moved on as I assumed it had.

On the very good side I have met, either online or indeed in person, with such wonderful people that my life would not have otherwise caused me to meet. And all over the world, mostly online but some in person.

I was introduced to a huge world I never knew existed and at a time that yes, in my then early 50s, I was beginning to get entrenched and less flexible in my views.
Well for me HIV changed that.
I do not find it possible to be fixed in my views, nor blind to others experiences when living with HIV.

It confronts you with different issues, different people, different realities every single day. Well maybe not all, but it does me.

In more recent years, 6 /7 I have been blessed with interacting with so many people from counties in Africa who live with HIV. Mostly South Africa, but also Zimbabwe, Kenya, Nigeria, Mozambique and more.

I did not target any country or origin. Just those also living with HIV, like me and my husband. But many I met were from other countries than myself.

All over the world!! Probably, almost, every country in the world I now know someone living with HIV.

But two of the groups I am an admin in were joined by mostly those in African countries.

I do not think I will ever be blessed to go there. But I think I understand at least some of the issues they face, and they have given me so much.
I have also ‘met’ so many from all around the world.
And it is a funny thing but in the social media world, we know each other well despite never meeting or likely to.

But I have also lost so many.

Some actually due to AIDS, despite the current medications, and some in the last few months. There has been a lot of deaths recently in the HIV online community. I do not know why.
But maybe in some cases because those that have been battling for so many years are now aging, and despite what many think , even with the current wonderful medications HIV takes a toil on your health others who are not living with it do not have?

Many were diagnosed before these medications existed and others were diagnosed late. Others did and still do not!! not have access to such medications, others they no longer work for, others refused to take them.

A few I knew even here in Cornwall. One lost her battle just 2 years ago who would not take them and another who the meds no longer worked, others that got co-morbidities, caused by the meds or HIV directly,. Those with HIV get cancer and cardiovascular, kidney and liver issues plus HBP, Diabetes, bone issues far more than those without. Plus many others online.

Two I knew,online, died in the last month.
One I know now is battling right now and I am told will probably not make it.

A very long term survivor. Diagnosed initially with GRID - Gay-related immune deficiency - as they did not know then about HIV and that this was causing it and the majority, if not all, known then, were gay.

It must have been very hard to be diagnosed, when heterosexual and male, at a time it was seen as a gay only condition in America, when he is heterosexual and at the time married. This, he said, caused him a lot of problems with stigma, wrong assumptions about how he got it, even treatment. And sadly his wife did not make it, she died of AIDS, at a time most did not accept women got HIV.

He can be very 'difficult' to know, well for me. And he blocked me many times.
I never said an unkind thing to him, not ever.
But he is so very sensitive, lives in a very different world from me and I can be blunt.

But I am very fond of him.
And very sad another warrior is struggling.

I guess my point or writing this at all is HIV has not gone, nor sadly has death via AIDS or due to complications of living with HIV and some so very young.
I am in my 60s I am very lucky to still be relatively OK and I so know this.

And that sadly new diagnoses are still happening and to live with it is pretty dire, wherever you are in the world it is not good, but in some places it is very bad.

I have good medication from the NHS. No social support I only find this online but my medical care is good.

But I am lucky, as I live here in the UK. I talk to those every day that are still on medication that I was on myself up to 9 years ago that if I was still on it I would either be out of my mind or physically in a very bad way. I have bone problems due to it and kidney problems and it sent me totally loopy.

All now recognised side effects including the fact it crosses your blood/brain barrier and causes mental health problems. Some it causes psychosis. I was affected and near to this. But when it got really bad I had the option to change meds as other ARV medications had come online within the NHS by then. Also I changed to another med when my kidneys started to be damaged - too late for my bones but at least my kidneys and mind is relatively OK!!

But many in many parts of the world do not

All too many in the world I talk to have no choice but to take this and other older medication.
It is all that is offered under their countries HIV schemes. Often funded by aid and only generic versions – which is a different issue again
But like I had to when that was all that was offered, they have to take it.
As anything is better than the alternative.

An alternative I saw when my friend died in 1984 and when, not so long ago I watched my own husband nearly die of AIDS.

This is a draft.

Just my first thoughts. I may add to it.
But I wanted to start to get them down

What do I have. Apart from HIV?

2017-01-01T18:22:00.000+00:00

At 16 I was diagnosed to be a psychopath. Actually I was first called psychopathic at 12
Try having that as a diagnosis? At that age??

Despite the fact I have never knowingly or deliberately harmed another person physically or mentally, ever, but that is that is what I have as a diagnosis/label .

I think now it would be called a 'personality disorder'? Which does not carry the stigma psychopath does..3
But .......I had to live with this label most of my life.

And that they call it something else now, does not really help me much

Well I can agree I am a bit odd
But to live with this has been so dire.

And then to get HIV in my 50s really was the last straw for my sanity. But I am trying I am really trying.

But think how it is to live stigmatized your whole life??
I was put in an asylum - it was that then - and later once admitted to a then so called 'theraputic community'

The Henderson. Did me a lot of good. Taught me how to live with what I have and make a good life

But I never appreciated the then head psychiatrist, when I was there for a year - Stuart Whitely and his colleagues who I also met.......~Writing the book, about us, that he called 'DEALING WITH DEVIANTS'

Just because he could and got credit for his work.

Dogs, drugs, bands and Chocolate - and other New Year ramblings about my life

2017-01-01T15:29:00.001+00:00

Panic over. While cleaning up today and moving and putting away, Christmas decos, sweets, pressies etc. without thinking, while tiding put a small bit left of a chocolate bar lower., that had been safely, with all the chocolate, up high, out of animals reach,

None of our dogs like or will go near chocolate. But we have a guest dog that does, is mad for it!

Maybe its like an addiction for them? Something like alchohol, or speed, tobacco you may find distasteful to smell and even taste a tiny bit until by accident or because someone fed it to you it, ( or you thought it was cool LOL!!) you get addicted!!?

Certainly worked this way with me..

Well not speed, weed, coke, etc. Well it did all of this and more, as but only because it was 'cool' I did it because it was 'cool' and weed makes me very sick!! So sick I have no idea why I did it more than once?? Even now it makes me sick. Speed though once I got over the distaste of shoving it down my throat or snorting it, I really so liked it, for a while.

But while tried it all at 13 onward, I have long, since my mid 20s, knocked this on the head, thankfully . But I can rationalise and a dog cannot LOL!

Wish I could now over my later, and sadly legal, addictions

I totally once hated the smell of tobacco. And growing up in the 50s, everyone smoked. We were brought up on cigarette smoke!
My dad was a chain smoker so I hated it. Even our walls and ceilings were yellow with it and my mum did not smoke and did her nut trying to clean the place and keep it nice and smelling nice. As she was partially sighted, this was very hard on her.

So while then on social occasions then hold a cig in my hand to look cool or take a drag of someone else's - it truly was cool then, believe it or not - it was only for effect on my part.

I did not actually smoke until my early 30s. But at first only socially. To be fair I could not have called myself a smoker at all until I met Barry who is, like my father was, also a chain smoker and is to this day.

I do not see us as joined at the hip. I do not think I am at all. I have spent most of our married life apart from him anyway as she was a seaman. It was only when he retired, when he got HIV, when they basically chucked him out, that he has been home all the time.

But I guess having the odd drag of his, more and more frequently, just to 'join in'?? finally got past my distaste and to the addiction stage????
I so wish I could stop it now, and he. It will kill us both. Worse think you can do if you live with HIV is to smoke tobacco.

I also hated alcohol as a kid. My dad was also an alcoholic. I am not just saying this but he was, but was a functioning alcoholic. This can be harder for all concerned in some ways - as functioning alcoholics rarely seek help until they stop functioning???

He never did, when he died at 80 he had two business on the go and still drinking!!!. And did not die from anything alchohol or smoking related!

But not saying when very young and stupid I did not give both a go.

Which led to some very amusing situations where my very drunk father - he was drunk every night - drove out to Newbury or Basingstoke ( we then lived in Kingsclere which was half way between both and I went out to both to see bands etc) out to get his - sometimes, but not indeed always by far as it was not really my thing - drunk daughter from 13 years old onward, while totally off his tree himself!!

About 9 miles to Basingstoke , 8 to Newbury. Thankfully a straight road. And in those days, little traffic after 9pm.

The funnest one I remember, and I was sober and had not had anything at all that night. Was when he picked me up from Newbury Plaza, The Cream I thank I had gone to see?
YEP - Found it!! it was the Cream 14th April 1967 http://www.whereseric.com/eric-clapton-tour/14/04/1967

And I was about 14 and was there.

And when my dad arrived after, he was when he arrived, paralytic!!
I doubt he could even see!!!!

On the way back he somehow strayed off what was a very straight road from Newbury, through Kingsclere on to Basingstoke.
How anyone could stray from that road I do not know. But he did?

And in the side lane he had got into he drove into a ditch, , front wheels first.
But by chance it was just outside the farmers house? I went and knocked - my dad was slumped at the wheel and unconscious by then. I was not alarmed, it was not unusual - and the farmer came out................almost as drunk as my dad!!!

He sympathized with my father. Woke him up, got his tractor out and pulled our car out of the ditch.
Shared another whisky with him and somehow my dad drove me home!!!

But you have to understand he was doing his best for me. There were no taxis then at night. He could not see his daughter just hang around until the first bus back - well I had and did in the summer, but he did not feel he could let me do so in the winter, this was April and very cold.

The buses any way in those days was only about once there and once back at day , at most twice each way. Which as the gigs were a Saturday, the next day would be a Sunday and there were no buses on Sunday on that route. And he could not stop me going out.
I was unstoppable in my bid to have a life and see the music I loved.

Unusually I went alone. I did not expect any other young women, certainly not any of the guys as they were so straight, I knew in my village to do what I did and they did not.

Very ironic to me now. As now I ain't even got the courage to go down my local pub on my own!!!!!!!!

If I could avoid him picking me up I would. I took the bus there then often hitched in the summer months, but that was not viable in the winter so would have to find a lift or call my dad. No mobile phones, I found the nearest phonebox. We were very lucky then as my dad had a business so we were lucky to have a phone in our home.Most then did not.

I would often get a lift from an older person back to Kingsclere, from Basingstoke or from Newbury, who was at the gig. I was very good at finding lifts.
Some, many, I had to have sex with in return. But hey top me then, a lift is a lift.

Especially if it avoid being picked up by a very drunk dad or spending a night on the streets in the cold!!

I once got a lift 8 miles home from Newbury on the back of a mods scooter. Poor guy, he lived in Newbury, took me all the way back to Kingsclear, for just one kiss!!!

But I found I did not like booze as we called it at all and my dads behavior put me right off it, so my experimentation with it was very early 13 to 15

But by my 20s I would drink on social occasions as did not want to seem like I was the party pooper but never more than one!! I really did not like it at all!

Barry when I met him was a real drinker. When I first met him he used to laugh at me as I would make one beer last a whole evening.

Still was a bit like this all our married life until he found out he had got HIV, because basically he had had sex when drunk and it is the drink he sees as to blame - not so sure.. However . Since then he has knocked it on the head

I am not saying I was squeaking clean, just that alcohol at that time was not my thing.

As I did start to appreciate a nice wine and once drunk all Barrys supply of wine when he left me on my own for our first Christmas and New Year together, in Ashton when I knew not a soul.

But it was not regular, by the time I was about 37 I would drink a bit of wine, but then I got pregnant and had a baby after that so did not bother. But one day I found, at around 45, why people drink it!!

Had my first hangover ever after my husbands 50th, 15 years ago!!!

And when I was at a very low ebb and then I found when I had my accident at 50, how while it does not kill pain it sure makes you forget it!! And the loneliness.

I have been addicted to alcohol ever since.

And I started to drink at the exact same to my daughter Caja, from a similar age from me, also started doing the same as me at age 13 to about 17 when she moved away and got her car license .

As at about 13/14 She also started to go out from this small village to see bands/parties/whatever etc and call me to pick her up, sometimes in the early hours, when I was as by then a drinker . And I was at times drunk. Drunk when picking her up late at night, when drunk, just as my dad had done to me!!!!!! And a drunk in all other ways. Just as my father also was.

And she has never forgiven me.

It was not my fathers drinking that damaged me, not even stuff like nearly killing me several times because he drove me home drunk. I can forgive this and indeed at the time it did not matter. As I knew he picked me up because he cared.
It was the nasty things he said to me while drunk, that did the damage.

And sadly it is the same for my daughter about me!!

What goes around does come around, my mum used to say

Anyway back to the dog

As years ago had a rescue lurcher that was the same about chocolate. She would go mad for it so Christmas was a nightmare keeping it out of her way.

Yet our current dogs even find the smell distasteful. One once licked some left for a second, hoping it was tasty, but recoiled from it and she will eat anything!!

This guest dog is a rescue too and came to its human already with a chocolate addiction. It has sadly done it before at Christmas with its human family here and a few other times. Ate a whole chocolate cake once. Not its humans fault. Someone else left it within reach.

But due to having this guest dog, that we have often, so we know. We have been careful to keep all chocolate, even biscuits, up out of reach or in tins with with lids safely on and also up high - not that easy if you have a guest/guests that do not have dogs so do not understand. This is essential as this dog is tall enough to reach any work surface.

I forgot for just a minute and the dog ate the chocolate.

I did a check, body weight, amount eaten and it will be OK. There is little or no risk from the amount our guest dog ate.
If you want to check too, you can here. http://www.askavetquestion.com/chocolate_toxicity.php

Pity we cannot check at the time about the chances of damaging our children!!

I do not have Bi-Polar at all

2016-12-28T14:43:00.000+00:00

I don't have Bi-Polar. But I do have another labeled mental health issue that I have been long diagnosed with. At 15 and I am now 63. My poor parents were once told I'd never live a 'normal' life?

I am so very glad they both lived long enough to find I could and so very much did

- trained as a teacher and then a youth worker and I know I was useful to so many

And so grateful they died before they knew I had HIV.

Which I can't cope with well, and so thankful they did not see me crumbing as I am now.

Well my mum did live a few years after my diagnosis but she was by then blind - She was partially sighted all her life but was blind by then and at the time of my diagnosis she had has Dementia , which I so fear too.

People with HIV, even with the now marvelous medications we have are more likely to get Dementia, and a lot of other things
And my mum her mum, her mum etc, etc, died of it

I value my brain above all else. But I may very well lose it

I have had many friends with Bi-Polar, and I have, over the years, got on so well with those that do.

Once I even sadly had to call the mental health team/ambulance etc for a dear friend with it who was, sadly, having a very massive 'episode'. This was so very hard, I cannot explain how hard it was??

What a decision to have to make????
And then, from the very minute she was admitted, I fostered her child until she was well enough again to look after him again

- he is doing so well, been to uni, and a lovely person by all accounts. She is, as far as I know, good now and settled with her partner. I am so thankful I could help.

But wish I saw her now. Or her son? If even just now and again.

She also helped me, and very big time, before this, and so very big time too.

When I had my accident and was so weak and ill - had an infection in my bones - and non weight baring anyway. I could not walk at all and my husband was at sea.

It was her that came to collect me from hospital and while I was in there as Barry was then at sea.

Actually I discharged myself. Another story of yet another abuse/lack of care by the NHS.

I was readmitted 3 days later with this infection and was critical on IV antibiotics for a few weeks, but thankfully not into St Micheal's ......where they had missed, how ill I was, despite me saying and saying!! I was suffering an infection

Yes I did. She saved my life by coming to get me that night. I would not be alive if it was not for her!!!!

And she had, in the meantime got all the things I needed at my home for when I returned to be able to survive once at home - aids like a wheelchair, perching stools, crutches, walking frame, toilet frame and seat, chair I could sit in etc, etc

And it did not end then.

She came up to see me daily. Every day for about 9 months, every day???!! I could not even walk then, nor often then get out of my bed. Pretty much no one else did I see. Excpept also Sandy - Sandy I cannot also thank you enough.

Even though up to the minute i fell off my horse and big time on that hill - and was airlifted to Treliske ( Royal Cornwall Hospital) I thought I had loads of friends.

Well I thought so as they were here most days, eating my food,. drinking my tea and coffee, their kids riding my ponies, us sharing so much due to our kids being the same age??

But the day I fell off my horse that all ended

But this friend, no she carried on being a friend. She came to do the things others could not or would not do.

I did have a daughter but she was only 13 and at school, I tried not to put things on her, I so really tried. This friend, with Bi-polar, and struggling herself at the time. Came up to see me and fed my daughter almost every day.

I owe her a whole lot that I can never repay

And I also paid a carer, or rather a caring business, Penhellis http://www.penhellis.co.uk/ -- changed hands now so that they were lacking no one can do a thing about now.

The actual people that did the caring got shit all --- to come in twice a day to get me up, get me to the loo ( if I had to go between the times her and my friend were here I had to crawl ) and give me a cup of tea.I paid them quite a lot of money to do this

But one was outstanding Rachael. She also in my view saved my life. She went above and beyond the pittance she was paid to do her best for me.

But others , sadly no long out of my life, as either dead or are just not in my life any more, did so much also.

I owe my life that I still have it to the very few friends that were there then and stuck with me then. Roma, Gelly, Sandy, Ali, etc .........what can I say or do? I can never repay and not at all now as some have since died

But I hardly ate as no one cooked me anything, this friend did get me some meals however, for which I was and am very grateful. But there were a lot of days I never ate anything.

But the bonus was I lost weight LOL!!

But my friend came in every day and of course for nothing.

And I also owe a debt to my other friend at the time that then lived in my caravan. She rented it, so was a tenant Sandy.

Who saw to my cats and dogs. When my daughter, understandably, could not

Sadly I had to get rid of my then 5 ponies, my goats..loved my goats, chickens etc ..... either it was this or I would have inflicted cruelty on them , and this could never be allowed to happen

Jaffa he went to a riding stable as no way could I part with him. But the others, so sadly, to Barry Rowe a local horse dealer ......... https://www.facebook.com/groups/161532660715278/ it broke my heart .......I still wonder where they are? I loved those horses. Two of them I bred

But all my other friends just faded away!!

As all/most except them that love you do when you are on hard times and cannot give them what they want from you.

Even more have faded away since my diagnosis of HIV. Sad isn't it!!

I am guessing that why I do get on with those who have this, and have had many friends with it, because some of our behaviors, especially this in the meme below, are similar, so we understand each other. But because I do not have the manic phase, I can be level headed when they have been high, so have helped to hold those I know with it together and to get them help when need and reminded them to take their medication - when you have Bi-polar, someone who is not perturbed by how you are and 'gets it' to 'remind' you to take your medication is in fact so very important.

And I am so very glad that Bi-Polar is now beginning to be understood and be less stigmatised.

But sad for me that my diagnosis isn't at all.

I do not think I am cut out for the 'hospitality ' thing' ??

2016-06-06T09:02:00.000+01:00

I do not think I am cut out for the 'hospitality ' thing'??

A very good friend at the time, Gelly, said when I first decided to let out Yurts, camping and the Studio flat to visitors 'are you sure? I am not sure you have the temperament for this?'

She was totally right, I don't. But I have done OK during the last 8 years or so.

As we/I had no choice.

We had both been diagnosed HIV positive??

Barry had lost his job and directly due to this. We had no money, few savings and a too big house and land to maintain and animals that depended on us.

And we were too traumatised at that point to even consider selling up and moving.~So we sunk the little savings we had into it and despite my 'temperament' we made it work!!!!!

But I guess now I have stopped my main business, the Yurts, I now have less patience?

The visitors three weeks ago seemed fine.

Except when as when they booked, it was as a couple I had only made up the one King size bed?

But when they arrived they did not want to share the same bed?? And said they thought it was a two bed apartment, when all my advertising plainly says it's a one room Studio flat!!!!

Even though she kept referring to him as her 'boyfriend'. She was aghast that she may have to sleeping the same bed with him!!

She was from Brazil he works for london transport and they were 49 and 50 years old, so not either young or I thought , inexperienced??

Not sure he realised she would not share his bed??

But OK , I made up the sofa bed and very quickly. But just wish they had made it clear before they arrived?

From then on it all went pretty smoothly.

And they were interesting visitors as visitors go.

As her grandfather was fascinatingly born and lived in Helston near us in Cornwall and she had always wanted to come here to see where he came from?? That is such great history and I chatted to her about her memories of her Cornish grandfather, who of course was a miner who once in Brazil for work, married a Brazilian girl and stayed and it was very informing and interesting!!

But I have to admit, I was a little taken aback, when she out of the blue,!!!!!!!!!!!!!

................. suddenly pulled me out of sight of her ' boyfriend' grabbed me by both hands, said ' I have something very important to tell you'

starred into my eyes and said - Jesus loves you, you are saved??

And tried to continue, still clutching both my hands and staring into my eye, telling me all about Jesus!! And how she knew and for sure, he had forgiven my 'sins'?

I was a bit relieved as I thought she was going to tell me about her sex life or lack of it, or to complain about the size of the room!!!! or that it was not 2 bedrooms??

I had no choice but to disengage from her and to say - but very nicely - so not to offend as I respect all peoples beliefs and religions and their rights to have them.

'Sorry I am not a christian and never will be? But I thank you so much for your thoughts.'

I have since realised she had looked me up on the internet - we supply free WiFi- and realised, as my name is easily Googled and we are open about this .......that we have both have HIV, that we live with HIV, and she then must have thought I am particular need of saving??

Very ironic as my husband got HIV from a women he met when working in Brazil ??

And I have been faithful to him since 1984!! what crap assumptions people make about those that live with HIV??

Not all are as religious as her or their religion says no to sex outside marriage - but each to their own? and I got HIV from sex, but with my husband who I am, of course, in any religion, 'allowed' to have sex with, without it being a sin!!!!!!!!!!!!!!

Oh well!! But her obviously staunch Catholicism explains why she was not willing to share a bed even at 49 years old and single, with the man who had paid for her ticket to England and was paying for her trip to see her roots.

But not sure he got it before he got here??

But that was OK. Their business , not mine.

So she, and he, mostly her, were fairly interesting. All went well during their stay. Until they left on the Saturday and the next people arrived the same afternoon for the flat?

I had spend since they left cleaning etc and it was a bit more dirty then than for most and with two beds to wash as well?

But fine. That is my job!

But it was not at all 'fine' in my book when the new visitors ran out of gas on their very first evening!!!!! -

I guess the women from Brazil felt the cold???? And OK I get this. but she burnt any profit we may had made that week and then some!!!

We have no mains up here so gas bottles does the heating and hot water in the Studio.

I had had two full 47KG bottles or propane connected when Mrs Brazil and partner arrived. Costing about £70 each. I usually recon in one bottle even in the middle of winter for the Studio flat, at most a week. But somehow it seems they had used two bottles??

Must have had the heating up full blast all 7 days and a shower two if not three times a day for both of them?? Cleaning away their sin perhaps as I am pretty certain they ended up sharing the same bed??!!! Do not ask me how I know this, TMI, but I do and they did!!!

But OK, this was their concern and the gas, I guess, it was not the new visitors worry it was ours.

So we panicked as we had no more gas bottles of that size that the Studio flat requires to effectively run the gas boiler. They are too big to collect ourselves and none could be delivered here until the following Wednesday. So we put a smaller bottle we use for our own gas cooker on it, Barry had to carry it, further hurting his bad back, and crossed our fingers it would do.

It did, thankfully. But we could not cook ourselves for a while. As could not get gas bottles delivered until the next Wednesday and then it was Sunday. But that was not their problem

As a family of two adults and two boys, paying to stay, they at the very least expect to have hot water and heating.

They were very good about it.~ that it took a while to get them hitched back on with gas.

~but it seems were not that enamored with what else we are offering in the studio?

The said in the visitors book..................

We have a lovely view but the Studio is too small?

Well we make it clear it's really suitable for couples but if you do want to save money on your family holiday and squash a couple of kids in as well, then that's fine by us and we will even supply the bedding and make up the Sofa bed.

But we can't make the room bigger!!!

They added we need to turn the sofa bed around so you can sit and look a the view while watching TV, or get a new sofa bed!

Totally impossible, there is not the room!? That sofa bed is the only one we have found that fits and it will only fit in one position - but heigh ho!!!

They further added that need to get a screen for between the king size bed and the sofa bed??

Well you are paying the price for a one bed Studio. And cheap even for that??

So in my view if you want to have nooky without your kids seeing , then I suggest you book a two bed apartment and pay the price for that, or just wait till you get home??

They also added that we need to get the lane fixed, as to bumpy and too narrow - Oh I soooooooooooo wish!!!!

We'd love to get the lane fixed!!!

It does not do our cars any good either.

Does anyone think we want to live up a lane that is like this??? If we had a choice???

But it is a 'non adopted lane/bridal way.

and not directly ours or any ones responsibility

~Yet in fact up until this year my husband went up and down the lane, every single year, for over 30 years!!!! filling potholes with concrete and bags of DIY ash-felt ....by hand.......for over 30 years!!

Occasionally others who use this lane have contributed something to keep it usable.

And in the many years until the last 10 years the farmer next door would occasionally get a load of ashfelt from a friend to fill the worse of the potholes and we would help him lay it.

But not in recent years and not ever our next door neighbors and not anyone as consistently as Barry for the last 30 years!!!!

But his back has now given out , finally. And he is just not capable of pushing wheelbarrows of concrete or whatever, up and down that lane!!

But we would always join in and contribute a fair share to get it solved.

But no one else who uses it seems to have any interest and some damage it far more than we ever have - i.e tractors, lorries and recently a JCB???!!!!!!!!!!!!! going up and down all the time, that really damages the lane etc.

When we have only ever driven cars up and down it??

But we cannot afford, not on our own, to put it right? To ash-felt, or whatever, it on our own, but we are here and always willing to contribute. If others would??

It seems no one else that uses it, has any interest whatsoever in paying anything to fix the lane??

This saga does not quite end there.

Those in the Studio until yesterday also did something that really got to me - they put toilet paper in the key hole in the door between us and filled up the gaps in the door with this and cushions and other stuff, between us and them?

To me this was a huge insult.??!
They could never hear any noise from us as we deliberately and carefully do not make any.

Hard to explain the situation - but

But the Studio we let was once our 'granny flat' for my mother in law.

It has its own en-suite bathroom, own heating, own front door. It is completely self contained from our house. But because it was built for our then over 80 year old MIL there was a connecting door built in between us to the house. For her then safety

But while we have not taken it out. As you never know when the Studio flat maybe needed for a one of us, a family member or a friend in need. In fact when I was in a wheelchair for 2 years or so I lived in there myself ........ with this door open between me and the rest of the house

But we have effectively since blocked it off, for all intents or purposes while we have strangers in there.

There is now a wardrobe over it on the Studio side.

Yes inside, when you open that cupboard, you can see the door, from that side. So I assume they thought we could hear or smell them and they us??

But on our side there is also another storage cupboard. Packed full of duvets, bedding towels and everything for letting the Studio and no noise or anything can get thought?

Least I did not think so?? We cannot hear or smell anything from anyone in the Studio and we are always very quiet.

I would love now and then to have a blast out from my stereo . Listen to music very loud and even now and then have friends around to do so with me.

But since we have let the flat, I have never dared and we creep around so as not to disturb anyone staying.

But what I am guessing happened this last week is...............

Barry sadly now has a very bad back. So unusually he was spending a lot of time on the sofa in the room just behind the Studio. He could not crawl upstairs, and he smokes, and a lot. especially when in pain. Then he smokes more.

OK we know he should not, for his health and it is not PC, But he does and it is his life and his ( and my) house??

But because we let out a small part of it to holiday visitors we have just have to suffer the huge embarrassment and the feeling that we are persons non grata, of our visitors stuffing toilet paper into the keyhole and around the door to keep out the smell, or noise, or whatever, from us???

And that is my point.

I am not suited to this 'hospitality ' lark. As it hurt me to be so non approved of.......by anyone.

Barry says 'stuff em ' and they know what we are offering and it is so very cheap ( when we go away anywhere we have never paid as little per night as our visitors do) and it is his business if he smokes or not etc.

But my feeling. If we let out any part of our house to anyone.......it is no longer our house?? Even though we struggled and for so many years to pay for it. As long as we have to let out even just part of it, it is not ours??
So wish we could afford not to do this at all anymore

But reality says ....we have no choice??

Not the end - to be continued

Prince - His death, HIV and my thoughts

2016-04-30T09:49:00.002+01:00

The media. many in the HIV community and many on social media are speculating about whether Prince had HIV and died of HIV complications ( i.e AIDS related HIV opportunistic infections.)

Many are asking why does this matter? It does not alter his achievements, who he was, what he meant to so many.

One blogger I know wrote this on the subject.

http://whoneedsnormalcy.blogspot.co.uk/2016/04/why-you-shouldnt-care-whether-prince.html

And I do very much agree with most of what this blogger said as of course it doesn't make any difference whether he had HIV or not in terms of who he was, what he achieved, his legacy etc.

But as someone who is also living with HIV, one aspect does concern me and feel it is legitimate to express it.

That if he, or anyone, did die if HIV related opportunistic infections, this was avoidable with modern medications. Which he certainly had access to.

Then, if he died of this cause the only explanation is he refused to take them and died because he was in denial.

Denial kills when you live with HIV .

Yes those living with HIV and on ARV medications, do die, everyone does, and a few much earlier than they may have if they had not lived with HIV. As living with HIV, especially if like us you have had a low CD4 count at anytime. And this and even the meds themselves can still cause or be partly responsible for early aging and cardiovascular, and other conditions such as bone loss and loss kidney function - both of which which I have - and other conditions that may cause premature death.

However those living with HIV and taking ARV medications, rarely, if ever if their meds are working for them, die of what used to be known as AIDS i.e HIV related syndrome of infections and conditions.

And if it is not pointed out that if this was the cause of his death, it was avoidable. I think/fear that many who have no knowledge of HIV will assume that HIV is not the manageable condition it now is?

And I think this is stigmatising and sets ignorance about HIV back a few years.

As those that are not aware that if he just took the meds he'd still be alive, and heathy enough to still be performing and creating, they also won't realise that taking HIV meds renders most effectively un infectious.

Which is why of course mothers living with HIV now rarely pass it on to their children, why we can now have children and healthy children, and normal sexual and other relationships even with those that don't live with HIV .

Pointing out that if a very famous person only died of HIV complications ( once known as AIDs) it can only be because he refused medication, is in my view a valid point to make, for many reasons.

And even though we do not know for sure he had HIV. As there is much speculation he did and it is daily mentioned in social media, I think it is legitimate and necessary to make clear that if he did, he would only have died due to HIV because he refused medication.

I am going to use this more whether you want to hear it or not - its my blog

2015-12-29T11:55:00.002+00:00

In my last post I was probably overreacting to a few people in a couple of Facebook groups I belong to saying the old turkey - HIV is no problem now you have the drugs!!!! - Said by those that do not understand the reality of living with HIV despite the wonderful drugs we have now.

We are, thankfully and surprisingly given our age and our very counts when diagnosed - in fact both of us currently reasonably healthy ourselves. And so very , very grateful that this is so

But some of this I put down to the very brilliant .....and free to us here ........ health care we in the UK have under the NHS, but it still takes its toll in so many other ways and for me especially in terms of my always fragile mental health and my lifelong fear of non - acceptance.

In terms of HIV. I lost a good friend in 1984 - lest it never be forgotten that without the drugs HIV does mean death, as it sadly did for him, my very good friend
And it is not to be forgotten that many in the world still do not have access to, or cannot utilize these drugs for so many reasons, social, political, personal........................................

But even since the my own diagnosis only 9 years ago, and being lucky and having the incredible NHS where my treatment and drugs are free............

I have still lost 3 people I knew face to face and locally since I have had HIV from HIV as a secondary cause of death and one the main cause of death, and many, many, others I have learned to know, like and love online.

Most were not open about their status but one who died was. A totally lovely man Bruce Ellsworth, who was open and an inspiration to us all, was my age and a lovely person who helped me and so many others ......but there have been , and sadly, so many more.

Both Barry and I are relativity OK.
Unbelievably amazing to us that this is so.
We are blessed by something, no idea what but we are.

But we do have health issues due to the drugs. Me more than him.

As he seems to be OK so far, well since he got over AIDS. While he has cancer - prostate - but this is unrelated to HIV. He is in remission now and for that and it is the luck of the draw he got that, and genetics sadly. But so far it is OK and now in remission.
~
I have osteoporosis, AVN, daily side effects and we now both have a degree of kidney failure, which will progress if nothing is done, due to a drug we are taking Tenofovir . Which is the backbone of the ARV combinations both of us are taking.
Which is well known to cause in some, bone loss and kidney failure.

Only in some but for those it does and it is significant and has been significant for me due to AVN ( Kienbock's disease, can't use either of my hands well now due to AVN and due to significant osteoporosis I have other problems (OK at my age I may have got this anyway, but statistics show that Tenofovir can and does cause this and kidney failure especially in those older and who had very low T cell - CD4 counts- at one time)

It has to be remembered that people aging with HIV is at present a very new thing.

It is only now that many who have had it or been diagnosed for years are reaching their mid 50s and very few are like us 60s or older.

We are not unusual having only been diagnosed in our 50s but many have known for far longer and I wish I had.

We have probably had it for many years before and had no idea , as many do not -

get fringing tested all of you!!! Do not just assume as we did, that HIV never would and never did touch our lives - get tested. ..... pretty please !! Believe me it is far better to know if it does sooner rather than later.

To know makes a whole difference to your prospect of life.

However remote you feel it is, if you get tested and you are clear, as the majority will be. Then it can only be a positive thing to have done for yourself and it may have been an interesting or learning situation for you at the very least. If you have HIV you wil get the treatment and on time to save your life - testing is now only ever a good thing.

All who read this, for me, just have a HIV test and one every single year from now on - please, for me!!

But we are doing well so far.

That being said I do know two women personally in their 70s that are doing reasonably OK but I can't name as they are not open and I know so many more online - I do not know if it is significant that those I do know living with HIV and stil alive late 60s to 70s are all women now???

But what aging with HIV, even with the drugs entails is currently pretty much an unknown quantity??? It is something that has not until now happened before. we ar part of going into new ground.

But we are two of the lucky ones.
Because we live in the UK and are among the oldest at our treatment clinic - not by any means the oldest but among -

And we are still relatively healthy, and our current health problems ( except that is due to my accident which is fine as I have long adjusted to this) are most of them entirely caused by the ARV drugs they are pulling out the stops and trying to get us both on a new form of Tenofovir that does not cause bone loss of kidney failure to the degree the one we are on now does.

So looking forward to that. I have much to do in life and in some ways it is rosier than it has been for some years.

I get my full state pension on the 6th Jan. - one of the lucky ones for a woman as paid over 40 years of stamps and just scraped in to get an earnings related pension. If I had been born two months later I would not have.

So the first time in many years my survival financially .....such a relief ............does not rest only on what work I can do to scrape a few pennies, which to do so relied on me being here, and the same for Barry.

I now so want to travel, not big time but just ordinary travel . Until I went to Morocco in Oct I had not been away from this house for more than 30 years for more than 3 nights with Barry , 7 on my own to visit my sister once!!

Now I finally can ( and with Barry not alone) and for the first time in 30 years maybe can as I can just about to pay for animal care if we both go away, so I have pre booked a couple of holidays.

One to visit a friend who now lives in Greece on Zakinthos who every since she went there I have so wanted to visit....but no way could, until I got my pension - a bit of financial security and the means to pay for care of my animals I before lacked.

And I have booked to go to Naples in May, only to see Pompeii and Herculaneum. Which has been on my bucket list for over 40 years but somehow never got the chance.

So things are fine for us ..............as long as we keep healthy enough to do what we plan.

But the trouble with HIV..is.......
Its a smoking gun and in fact you never can know. Never, ever for sure.

We know are so lucky. We have the the totally amazing NHS and the drugs so far work for us and those that are causing us problems we know our health professionals are currently gunning for us.

Sadly not all and especially not in the UK, are so lucky, as us

I never write on here now

2015-12-27T13:30:00.003+00:00

A picture of us with our dogs at Praa Sands, Cornwall

I never write on here now. As really does anyone but but us care??

I do not think so at all

So now I use facebook mostly now. And twitter. Jut for me as I am well aware that non one gives one iota about us or our story/
Why should then. HIV dues not implicae on your life in any way......not until the very moment it does........and then......in some aspects it is too late!!

I want to stop ' preaching to the converted ' ........too fiking late for us.
And reach those of you who do not yet live with HIV
And think it will never happen to you an if you listen to me it NEVER will be of interest ??!!

If anyone is remotely interested you can follow us on either.
And we are so really OK at the minute. Doing really well on our ARVs and now me 63 in Feb and Barry 64 in Jan.
But today in Face-book I was today reminded of how dire parts of our journey has been so I will post the memory it brought up here.

_________________________________________

As a post on Facebook reminded me of when Barry was really ill with AIDS and was discharged from hospital to come home as they could do no more for him. As it was by then a question of if the drugs worked for him he would live, if not he wouldn't.

One horrible night I had to call out the duty Serco doc as he was so very ill, could not breath, was puking and distressed and it was so very scary. For us both.

It has changed now and thank goodness - http://www.pulsetoday.co.uk/news/commissioning/commissioning-topics/urgent-care/cornish-doctors-take-over-out-of-hours-contract-from-serco/20009214.fullarticle

I called the duty doctor service in real desperation, I am his partner/wife ( since 1985) and then at that time his nurse and I also had not long found out I also had HIV myself and my numbers were also not at all good.

I was was sooooo alone with it all.
We had no help really then at all . Except for Barry's 2 friends. You know who you are and we will never forget the support you gave him and your kindness.
But no one except one of them came to see us or offered us anything at all.
We felt we were and in essence we were, truly alone.

I had therefore to call them........ I tried not to but I was so truly scared that night. I am not medically trained I am not a nurse although I had to be one. If he had died that night no one could have changed that. But I wanted his passing, if it was to happen., to be as good as it could be. I felt inadequate to achieve this .

So I called our then out of hours doctor service ..................got this totally disinterested doc who had been brought in from Spain to do the weekend shift in Cornwall for huge/shit loads amounts of money and who could hardly speak english and had not even bothered even to read his notes.

Nor do I even think he even looked at Barry at all - except to enter the door just inside his room which was dark as Barry was photosensitive then and could not stand any light. Just to stand by the door and ask him a couple of questions.

I was a wimp as was so upset then and living with HIV myself was so very new to me ( and the last time I had been so 'close up and personal' with HIV was when my close friend and one time lover Derek died of AIDs in 1984)

So I was so very scared and said to the doctor I was scared he would die that night.

The doc said No he will be playing football for England in 50 years!!!!!

As he was already then in his 50s and has never in his life played or liked football and will be 100+ years in another 50 years . It was dire at the time and so scary to find in truth we did not even have any real help at all, not even from a doctor we called.

But we often joke about this now.

Whenever he gets unwell now we ask is it time for him to take up football finally before its too late?

NHS lift ban on HIV+ Staff - is this good or not?

2013-08-15T14:49:00.001+01:00

England's chief medical officer, Prof Dame Sally Davies

Today it was announced that In the UK they have just lifted the ban on medical personnel doing certain tasks in the health service. For instance surgeons, doctors dentists, nurses etc living with HIV could not perform certain procedures and operations, nurses also who live with HIV were banned from some tasks and jobs etc.

This has been lifted so they can now do all things within their training.

It has been replaced by regular monitoring to ensure they are taking any medication properly and their HIV is controlled
http://www.express.co.uk/news/uk/422130/NHS-staff-with-HIV-ban-to-be-lifted

http://www.bbc.co.uk/news/health-23698991

On first though it seemed great news. But have some worries too as employers in the UK are very good at getting round anti discrimination ruling. Will this mean that more HIV+ qualified medical people will be employed and stigma lessen for those who are already employed by the NHS, or will it in a convoluted way, increase it if more already employed ‘come-out’ and more apply?

My doubts arise because I know there is underhand and hidden discrimination happening in all areas of the workforce in the UK for those with HIV despite anti – discrimination and Equal opportunity legislation, that has and does stop those with HIV disclosing their status at work.

Therefore I apologise if I offend but I have a suspicious mind when it comes to how discrimination works in the UK in employment and know to my cost how a lot of anti discrimination and anti stigma is just lip service as ways can always be found around it as the legislation is full of holes and maybe deliberately so?

In theory NHS workers of all categories that live with HIV will now be able to do all tasks they were trained for, including procedures and operations. This will mean they will be ably to openly apply for jobs that involve such tasks without fear of discrimination that has beyond doubt been happening.

For instance even at the level of it made it impossible for people with HIV to do certain jobs within the NHS such as dentistry, surgeon even phlebotomist etc. Many have lost there jobs in the past or not been able to find work if diagnosed. HIV healthcare workers will have to be on ARV medication and have an undetectable viral load. As "With effective treatment, they are not infectious."

This looking at it positively, may be very good news in terms of de-stigmatising those who live with HIV.

However, even before such effective treatment existed with universal precautions that all in the NHS use the chances of getting HIV from a health practitioner was hugely remote and in fact has NEVER happened in the UK!

However it will have to be seen what the effect actually is?

As in fact despite the legislation being as it was, and the NHS thinking they only have fewer than 200 staff that will be affected by this, it is anecdotally the case here that many more workers within the NHS who have direct contact with patients and already do these until now forbidden tasks actually live with HIV then just 110!!. And these are those that know their status. There are of course many more who do not yet know their status but eventually will.

I have met personally, locally and through UK activists groups HIV poz nurses I have been too Nationally. Only one I have met was known to be HIV poz by their employers. Most it was not known because they were diagnosed after they got their job, so there medical records did not say they were HIV+ at interview. As here Anti Discrimination and Equal Opportunity laws also apply to those with HIV. But there has been a certain amount of 'underhand and unseen discrimination going on which worries UK activists more in some ways then when it is out-front.

As for some jobs, medical, social worker and teacher, youth worker which was my profession, and other jobs, mostly those that work directly with children, young and 'Vulnerable' people, you are asked to give permission for them to see your medical records when you fill in an application form.

You can request they do not see them unless you are offered the job and after interview when your references are being taken out as they are not supposed to discriminate due to any illness or disability. However in practice if you do ask they are only seen if and when you are offered the job, it is assumed you have something that may interfere with you doing your job, so basically it is unlikely you will be hired or even interviewed. So most let them see medical records before interview and if you do have HIV quote the Equal Opportunity act 2010 at them and hope they decide to interview you anyway.

And if you did get the job, in some jobs, special exemptions to what you can do can apply, that overrule on a ‘health and safety’ grounds some of the intended ethos of anti –discrimination for those sick and disabled that is covered mainly by the Equality Act 2010.

Like medical jobs where the Chief Medical Officer can and did make special rules applying to medical staff with HIV, social exemptions on what you can do can apply. There are others applying to other jobs usually under ‘health and safety’ justifications.

Also there are some inbuilt ‘limitations’ on what a disabled person can do or be allowed to do under the act https://www.gov.uk/definition-of-disability-under-equality-act-2010.

A difficulty as I see it in anti stigma and anti discrimination for those with HIV and other conditions in the UK is that the general public think we are well protected in law in the work place and in our lives, but there are at times ‘built-in’ ways around it or ways around it can be found, such as asking for medical records before you are offered certain jobs at application, but allowing applicants not to let them be viewed unless off offered the job, but then the employer deciding you have something that will impact on your work should you be offered the job, so and not interviewing if you are not prepared to let them be viewed.

I see this as a very convoluted and built-in ‘Get out Clause’ for employers to get out of the Equal opportunities act!!

However there is also evidence that these rules are also ‘unofficially’ overlooked as well. A nurse I met said she had an incident where she had to disclose and nothing was done, it was not officially registered and she continued her duties the same as before. She said she know several other nurses the same.

That when this announcement was made it was said it only applied to 110 medical personnel within our health service, because that is the number of HIV+ medical staff with direct contact with patients within the NHS that they know about. This is hinted at in the reports today http://www.bbc.co.uk/news/health-23698991

But actually there are far more, that for some reason or other they don't know about. As well as this nurse I had this discussion with I have met personally 2 others and one retired.

So I am now wondering if due to this change of policy if HIV+ medical staff will now disclose to their employers more, and what will happen if they do?

Will more who are qualified apply open about their HIV status for jobs they were restricted form doing in the past and will they be interviewed and employed?

Will this be a positive thing, will it lessen stigma or in a roundabout way increase it?

Sorry to be sceptical, but I think only time will tell.

Another dream hits the dust

2013-07-25T15:57:00.003+01:00

The sad tale of my last desperate attempt to do a BA

I now realize that I was stupid to try as if I want to go back to education I need to do an access course, and this indeed is what this is what this guy suggested .

However

This guy interviewing me is called Jamie Hanson – head of the Contemporary Creative Practice.

I gave him the chance to suggest that before I went to the interview yesterday for this BA top-up course.

As I emailed him before I went and over 2 weeks before to say that if in his view I was not qualified to go on this course please do not see me on the basis that I am. I sent him pictures of my work, a dissertation proposal and my qualifications.

I asked him to be honest, to tell me know and by email if there was no point in my coming for an interview for this course and suggest if there was no point what the alternatives were.

But he phoned me and said of course I was qualified via my HND, my teacher qualification, my certificate of Education from Anglia Ruskin Uni ( only did that a few years ago ) and my experience.

And he said of course come to the interview for this course. He also said and I quote..................

‘You more than meet the entry qualifications’

But when I got there he did a number on me.
In he was never considering me for a moment for this BA top- up, nor had he read the files I had sent him via email or looked at my work i had provided links to.

And was from the first trying to manipulate me into agreeing this course was not what I wanted to do - when it was - and suggested a foundation degree and when I said I could not possibly afford it and why, an access course.

I would have been fine with this had he said before I got there that I was not interviewing for the BA as I was not qualified or good enough or academically capable enough to do it and so if I saw him at all we were just having a chat about my options, if he had said that on the phone I would have been aware what his agenda was and would have had the information to decide to go and see him, or not.

But on the phone , he did not say this. His words were something like ' you are more than qualified to do the BA, please come along for an interview with your portfolio '

So I trooped along with all my stuff - had to take Barry to help carry it as a lot of my art is large - for what I thought was an interview for the BA and thinking I had a chance.

Only to find it was not. That his agenda was to persuade me to either do a foundation degree or an access course - with no guarantee if I did either I would get on the BA That is fine, I would have accepted this and not gone to the trauma of going to an interview as he could have told me that on the phone.

Why lead me to believe I was qualified for and interviewing for the BA top-up if I was not??

Anyway the point is, he could have told me on the phone and I simply would have accepted it and not gone

As there would have been no point!!

As I simply do not have the money to do a foundation degree and I would certainly not have the money to go on an access course, then a foundation and then a BA. This would cost between 16 to 18k – perhaps more and I simply don't have it and never will

I had worked out that I just about had enough money that I could scrape together to do this top up BA that he assured me on the phone I was qualified to do - this would have cost about £3000 payable in three installments and I worked out that with a lot of scrimping I could just about manage to pay this.

But that was all, there were no other options for me due to the finances.

If he had been honest on the phone I would not have gone, and would have just left it there

I guess he may have meant well??? He probably thought he was doing me a favour in seeing me at all and thought he was being helpful in suggesting ways to get to the stage I could do a BA

But the facts are I can't afford it, it was the top up BA part time or nothing.

I felt he was not honest and I felt humiliated as had he said this on the phone I would not have gone.

I did try make this clear in an email that I was only interested in the part time top up BA, and asked him not to see me if my doing this course was not possible.

He should not have done this. He should not have seen me. If he had read what I sent to him he probably would not have, but it was obvious he had not!

I guess his concerns were just bums on seats and not to turn away a possible student, and to just get me in and then persuade me that the BA top-up was not for me ( or I was not ready for it) and to go on an access course or a foundation degree.

But he was dealing with a 60 year old adult who in fact used to lecture at that college !!! Yes I used to lecture there!!

And I know how it works and what it costs - not a 18 year old fresh from doing A levels.

And I would have had to pay for myself - long story why.

But basically no way can I come off of DLA and ESA and get a student loan as if I do this I would have over 20k in debt at 60 with no hope of ever paying it back.

I did look into this just to see what the possibility was and found that if I died with that debt, it would be deducted from my estate and if I died before Barry this would mean he would have to sell our home to pay it and if I survive Barry my daughter will have to pay it out of my estate.

My daughter has a student loan herself she is being charged interest on./ It is not for the whole whack as she did not finish her degree but went to work as a chef. But she can't afford to pay back her own student loan.

I can not selfishly disregard the future welfare of my only child and get a student loan knowing I can’t pay it back as at 60 and disabled I am unlikely to ever work again and thus landing her with a debt of over 20k on top of her own student loan.

I did in fact make it clear in the email correspondence I had with him before the interview that I was only interested in the top-up BA.

I did not go into the financial details as that is my business, but I did at this interview and yet he continued to suggest an access course and/or a foundation , even though I had said it was financially not and option.Also if I got a student loan, which is the only way I could do what he was suggesting, the access course, followed by a foundation degree - which would take at least 4 years part time ( I was going for part time which doubles the time it would take because I know my limitations and I get too tired to go to college 5 days a week as i suffer chronic fatigue and could not do a full week)

So I just could not do this and I would be in my mid 60s when I left college – probably 66 or 67 by then and then there would be no guarantee I would be able to do the BA top up at the end of it. And worry that in 4 to 6 years I would not be physically or mentally capable anyway.

So when he rang me and said come in to see him for an interview as I was more than qualified on paper to do the one year full time or 2 years part time BA top-up I thought at least I stood a chance .

And for me financially and physically 1 year full time or 2 years part time that I paid for myself, was my only option

As also if I got a student loan I would be taken off of ESA - which I have fought to get - and it would be very hard , if not impossible to get back on it as by having a student loan to do 3 to 6 years at college - if I could get it anyway at my age??

Would be saying if I can go to college I can work, which I can’t, thus proving I do not qualify for ESA

But you are allowed on ESA to do a college course of 16 hours or less a week – well that is the information I have - so I worked out as this BA top up was dissertation based and only has 15 hours taught lectures in the first term, if I did it part time over 2 years I would be in college less than 16 hours a well so I could do it if I paid the fees myself. The access course and the foundation is taught and even part time is more than 16 hours a week, so I would automatically disqualify myself from ESA even if I felt I could risk getting a student loan at my age

So when I went yesterday I knew this top up BA, mostly non taught (mostly a dissertation with tutor input and much of it I could do at home) was my only option.

I made it clear both on the phone and in emails I was only interested in the top-up BA, but the sad thing is when I got there it was apparent he had not even read my emails properly or taken in what I was saying about my position.

He so had not read anything I said he even asked me how old I was!! Which was in my emails and a lot of why I can’t risk getting a student loan

Yes of course I would have been disappointed if he had said in an email or on the phone I was not qualified to do it and there was no chance, before I went to any interview.

But to go to an interview thinking it is at least possible in theory - that I qualify to do the course I was applying for - and then at the interview it being made plain no way was he considering me for it..............

Made me both angry and I felt totally humiliated and that I'd wasted my time and indeed his. I felt like I'd been hit

Social Exclusion and Isolation – HIV or just me?

2013-06-12T11:26:00.004+01:00

I have read many times over the years I have been HIV positive that many with HIV suffer social exclusion and isolation. I never through this would apply to me but sadly have realised it now does.

I have no idea how much this is to do with being HIV positive and how much is to do with me, my personality, age, circumstances and perhaps underlying self stigmatising that I am unaware of..

But what I do know it has only been so since I have been HIV positive and is getting worse.

All I know is this is not the first ‘issue’ I have experienced and even during my quite severe mental health and other ‘issues’ as a child till my early 20s and throughout PNI – Perinatal or Post Natal Illness - I was surprisingly never socially isolated.

Even in the depths of PNI I had at least 3 often more, people I knew I could visit in the village anytime for a chat and a cuppa and feel and be welcome - even at times day or night.

And surprisingly perhaps? I always had at least one main social group I belonged to and other friends and a social life, until recent years.

Ironically when I had PNI, at times I wished I didn’t – only briefly I knew how lucky I was to have friends and a social group that accepted and liked me – as at times when all I wanted to do was rest, not just one but many people would turn up for a visit and my house would be totally full!!!! But even though it was tiring at times I would not have had it any other way.

I think finding you are HIV positive does have an effect subjectively on how you feel about mixing with other people, or at least it did for me and especially in the beginning.

As hard as I find it is to admit, I did feel or rather fear, that I was someone people would no longer want to mix with. And as it was all new to me had no idea what attitudes would be or if I would be affected by stigma.

And sadly except for the few blatantly discriminating and judgemental encounters with others ( and sadly there has been a few but at least then you know how you stand) I have no way of knowing if I am being judged or stigmatised or if my status is any barrier to my being accepted or liked or wanted as a friend or part of a social circle.

As few would tell you honestly.

An I am afraid although I have toned it down a lot now, I coped with this fear of rejection due to my status by telling any group I joined about it and being very verbal about my status. And I know I was over the top with this. And that nerves, anxiety about being accepted and fear of being rejected made me loud and almost manic at times in new social situations or even in groups and classes.

I have improved, I am still a little like this, but not anywhere near as frantically trying to make friends and be accepted HIV and all, and too over the top than I was 4 to 6 years ago. And while I still share my status I don’t do it in such a pushy, over the top and inappropriate way, but my fear of rejection means I am not quite there as yet.

But what I do know is apart from one friend, who is also HIV positive, I now longer have ANY regular friends or a social circle, or any friends that I see regularly and my social life, friends get smaller and smaller since diagnosed as people seem to drop out.

And my biggest disappointment was fining that most people locally to me, or even in Cornwall, who are also HIV+ do not want to mix with me on a friendship level. What was the most disappointing were other Poz women.

I do know why, or some of the reasons why.

Few in Cornwall are open about their status. None of the other women I have met yet in Cornwall are publically open about their status or even open to all their friends and family. Not even my only local Poz woman friend. She is open with ‘some’ and I only mean some friends and family, but by no means is publically open. Many have known her for years and do not know her status. Which is totally fine by me. I am not asking or expecting any to be publicly open as I have been.

And on that note, the reason we are friends is she made a leap of faith and believed what I always say – that I may be public about my status and talk about it, but I will not disclose another’s status.

She took the risk, and we have even been in situations whereby she has been there with me and others asking me about HIV or my HIV and they do not know hers, even when this has happened with her friends present.

But no other HIV positive local person has taken that risk with me. I am aware that the fear is that by mixing with me, as I am publically open, I will in some way ‘out’ their status or it will be guessed they are HIV+ too.

I have been told this directly by some. I have also been told I am too loud!! This meaning both that I have too big a mouth in that I talk about my status publically and therefore may talk about theirs and that I am too loud as a person – which is probably true as nerves in social situations make me a bit manic and loud

I did have hopes this would change but it has been 6 years now and I have given up trying.

But I feel very privileged to have met the one local + woman I have as she is a wonderful person and a loyal friend , even if we don’t see each other socially – explained below why not – I have been very lucky to have met her.

But as to why I am in general socially isolated, outside the HIV area, I am not totally sure? It could be that I am open about my status and verbal about it, it could just be me, my personality – the fact I have always had difficulties understanding social norms and thus am an acquired taste! – it could be maybe a self fulfilling prophesy? And it could be other factors.

I simply don’t know? All I know is despite my husband, I am lonely.

*It has to be remembered that you can be lonely even when you have a partner. Many especially those with HIV have said how luckily you are to have a partner and yes I am and I KNOW!

However I have been together nearly 30 years and much of that time he was away at sea so my friends and a social life has always been important too.

Anyway, humans are social animals and no one person can fulfil all your social needs. Perhaps your very intimate and personal ones and I am very glad that unlike some I do have that – we have that. But Not even a couple is an island. Or rather it is not healthy to be. We need others in our life.

And it has to be remembered that we are BOTH socially isolated and excluded! If one of us was not and had a social life and a group they were socially accepted in and social places to go, the other would not be as isolated either.

Barry is as socially isolated as me, probably more so in fact. The difference is he does not care as much as I do and does not have much interest in going out socially..

But I would like to go out socially with others or even just have a few friends I could pop around to see and I would love not to feel so socially isolated and included.

In fact I would even be happy with just feeling able to pop round in the day to another’s house or they pop round to me for a chat and a coffee now and then. Like it used to be for me once .

While I have to say someone did pop around a few weeks ago but I was late for a class sadly and had to go out, but I don't feel I can just turn up at hers as she still has a child at home, and works and a busy life so I never know when she will be in. But I know I would be welcome and will try to go and see her .

However it has been some years since in general I have been invited to pop around any homes locally

In terms of social events or gatherings, it does not help that we live fairly remotely and most social occasions we are invited to, if not all, involved driving 8 to 20 miles and are in the evenings and both of us are just too tired most evening to even contemplate that. Some nights we go to bed at 7pm and sleep until 7am the next morning.

Due to our fatigue I am well aware that in part we exclude ourselves socially as we are just too tired for anything but very local events in the evenings.

Most of the things we have been invited to in the last 3 years have been via my friend, who surprisingly goes out almost every night and I am always welcome to go along. But she lives over 17 miles away and while in the day that is OK, at night it is beyond me to drive that far and especially back after and evening out. I feel it would be dangerous, I am just to tired.

And of course while my friend does come and visit me here as I am never invited to anything here, there is nothing I go to nearby to me that she can come with me too. So she just pops round for a few hours and we do not go out any where.

Most social things Barry and I have been invited to, and that is few, do not start until after 7pm, most later and we are both often too tired to even move by then!

If the few social things we are invited to now were nearer, in the village or even in the two nearest towns we would, or I would if Barry did not want to go which is likely ,I make the effort anyway.

But sadly all, in fact all, the more local friends in the village and surrounding area we made over the years here have moved out of Cornwall or in Cornwall but some distance away or their lives have changed and we are not part of it and we have not managed to make new connections in the village and locally on the level that we would be invited out by anyone or to their homes.

I have no idea if this is due to our being HIV positive or not as if it were no one would tell us, but I think in part it is. As I have been very public about our status. It has to be a factor even if not the main one.

But I also know it is about us as well. Barry just is not a social person. He is a very friendly person but he is very self contained and has never had or wanted much of a social life., He is happy to occasionally pop round in the day to the couple of friends he has for a chat or chat to people if he meets them, but going out socially has never been his thing.

As for me, I have always been an acquired taste!

I can be prickly and have strong views and while once you do get to know me and like me, I know I am liked, but not many want to make the effort.

When I was included and meeting people locally and making friends, I had things in common. A young and then teenage child, having to take her to school, go to activities with other parents etc., I was working and was active on a committee in the village, horse rode and owned horses and met others that rode, I had things in common with others around here and they gradually got to know me.

I also know that younger people would not want to share a social life with us. That it is only those our age or within 10 - 15 years either way, that it would be feasible with. Partly because I could not keep up with anyone younger socially!!

This cuts down the possibilities, as most who have moved into the village in recent years as the older ones moved out have been a lot younger than we are.

But sadly know that there people of our age or older locally that may also be sitting at home, wanting to be social feeling isolated and not knowing how to make that sort of connection with people. But it is almost impossible to meet these people. Even though willing there is simply no where those people around our age form this area go! Except the pub, and I have tried that and it has never lead to any social connections bar saying hello in the street and I can't use the pub very often at all because if I am their on my own or just with Barry there is nothing much to do except drink , and I can't risk that as in that situation I will drink to much and regret it!

Before anyone says why don't you make the effort!!! Well I do when I have the opportunity. I am always friendly and willing to have a conversation when I do meet local people. But it has to be understood that I live in a village that now has no shop - the shop when it existed was somewhere I met a deal of my local friends. If you walk through the village, walking your dogs or whatever , you rarely meet anyone in the street, most people keep themselves to themselves now, and I have no child to share activities with other mothers.

There is a pub, but I simply do not feel at home there anyway, or wanted there, probably its me, who knows??

Those I have met in the last few years in the village and locally do not invite me to their homes. I can count on a couple of fingers the amount of times I have ben invited, or it I have visited on my own initiative, the number of times I have got past the front door or further than the kitchen.

I know that some in the village of similar age to us, do have social occasions , parties or go out together .

Because ironically I see the pictures of these on Facebook and through their updates.

I do not want to give the impression I never go out.

Me and Barry often go for a meal, early evenings in the local town or otherwise nearby. Sometimes we walk the dogs then stop of at a pub or café.

I do various groups and classes. Over the winter I have done oil painting, photography and a painting a drawing class and am still doing two of them for another few weeks until the current term ends and will start again in September. I did also go to a painting club which I could not go to recently because my painting classes clashed. But I will go back when they don't.

I have tried a few local singing groups in the last few years, and one was OK, but sang stuff I really did not want to sing - I stopped going and that was my choice entirely, the members were always welcoming to me and wish I could have continued just to be part of singing with others, but I felt I could not. I may explain one day.

But the other two both turned out to be unmitigated disasters!!

Yes I know for reasons at least 50% mine but at least 50% theirs and mostly that 50% was due to the attitudes and remit for running them by the people who run them and it hurt.

Both were a disaster in the end and I realise I can never go to any groups or activities where, competition, ability in the activity and ability to perform at some level they require, matters more than participation and inclusion.

It seems that singing groups like this are few and far between and I have not found any that sing my kind of music as it seems to me it is so riddled with ego and mainly the ego of the people that run them and make a living out of it to by charging you up to £8 for 'rehearsing' and then don't want you to sing if there is a performance because you are not in their eyes 'good enough' either as a singer or a person!

Sorry so annoyed about my experience with those singing groups!! Even if I am the worst singer in the world or somehow socially unacceptable to that particular group, they were community choirs or groups and as far as I was concerned it should not matter if I could sing , or sing how they wanted

The other groups, classes etc I go to have been fine. But then no one would say you could not participate, even exhibit, if you wanted to, whatever your work is like from an objective perspective. Enjoyment, inclusion participation and learning is what they have been about - not making the leader look good!

Oh well I have dribbled on for far to long, trying to analyse the reasons it has become this way for me after a lifetime of having a lot of friends and belonging to a lot of social groups that I am now so socially isolated.
At the end of the day I don’t really know the reasons, just that it is that way!

I know if I want not to be this socially isolated I have to try. I am going to have to try driving the 17-20 miles to the few things I am invited too, go out more and try to reconnect with local people, and makes at least acquaintances with people in the village again.

I am going to try!

Update - June 2013

2013-06-12T10:17:00.001+01:00

I thought I would update the situation. It is now 2013, we are still together and content to be together.

I rarely write on my blog now, but keep it open because I know this journey is not finished, that one day I will have something to write again.

But for now we take our HIV medications, get on with life and cope with the health problems that have come along, and they have. Some caused by HIV or the meds , some not - Barry prostate cancer and diabetes. The diabetes caused by meds, the cancer not.
Me Avascular Necrosis in the form of Kienbocks, which could be med related osteoporosis, which is for definite due to the meds I am on which has been admitted one of the drugs I am on should not have been a first choice for a post menopausal woman as it is know to cause osteoporosis in much younger people than me and I did not have it before - I know that for sure as due to my accident in 2003 I have had bone scans before and this developed 2 years after starting this med.

I also have arthritis and worsening of my mobility due to my damaged leg. We both suffer chronic fatigue which makes like hard and high cholesterol which is drug caused .
But in the main we continue like many older couples with health problems - I am now 60 he is 61 .

But we have survived and are doing well in terms of HIV. Both of us have undetectable virus loads and CD4 counts above 600, which considering our age and our late diagnosis, is remarkable.
There has been some recent hopeful research that says that those with controlled HIV, who are undetectable and have a CD4/Tcell count of above 500 have the same mortality risk of peers without HIV
http://www.aidsmap.com/People-doing-well-on-HIV-therapy-have-a-mortality-risk-identical-to-that-of-HIV-negative-peers/page/2664793/

This is heartening to read as previously to this the research pointed to a shorter lifespan, not much shorter if doing well on the meds, but that you could expect between 5 to 10 years less.

However I still believe HIV, or the meds age you. That age related conditions may happen earlier for Poz people than if they were not Poz and for some cause health problems that you may not otherwise have had.

In fact I know some of what we have is HIV/meds related, and for some of us, me included, but not Barry, being HIV positive takes a toll on your mental health and general wellbeing.

But the prognosis for those with HIV is improving and improving all the time, and with new meds coming on board al the time that are more easily tolerated and less damaging, the picture is a lot more hopeful for us all that have access to these medications. Sadly there are still those, and surprisingly in developed countries like the US even, that do not have access to these meds. But we do and we are very lucky to have HIV now and not 20 years ago.
So for now we get on with our lives. Barry has even started and continues the business letting out a Yurt, camping and a small flat on our smallholding, to supplement his small pension.
The fatigue and other factors sadly limits our social life. I would like to have more of a social life, I am not sure Barry would , he has never ben one to go out socially much, but I used to be a social animal.

However we are living our lives as best we can and supporting each other.