HIV and US!

How I met Barry

2012-01-28T17:41:00.000Z

This is what I wrote on facebook about how I met Barry and why I am with him.

And still with him even though he gave me HIV

There is a lot more too it than this in fact . I would have to write a book to include all that happened for me and for him, but this is it in short - very short!!
I do not fool myself that anyone, other than me, will care or anyone wll read this except for me but I want to record it as part of our journey together.
As this was why I started this blog, as our own personal journey from diagnosis with HIV

Also/in addition!!
I so hope my lovely daughter will one day see this and know for certain that whatever a 'pigs ear' I made of bringing her up and however bad it was for her............unlike my own experience, she was born out of love , and we love he, she is party of out love and always will be

Love you so much Caja!!!!!!
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I met my now husband in 1980 through a friend - Mary Beaman.... love you sorry we have drawn apart ............- while living in south London. She lived in the flat under mine in fact.

He became one of my best friends.

At the time I was a feminist and at times promiscuous but mostly with women, and while I had sex with some men, my only serious relationships were with women as men had abused me, let me down and so many other things I truly felt I would never have a serious relationship with a man again, although I still fancied them sexually
But I did have a sexual on and off relationship with a folk musician at the time called Pete Bourne.

He was only on of many musicians I had had sex with, I had reached rock bottom as by then having known Hendrix at only 13 - but yes

And really I would not enter Barry, my lovely friend Barry into my world as it was then.
As he was such an Innocent, compared to me he so was!!

We all, or mostly , think of men as those who have the upper hand, and it is men who abuse women?
Yes I think by and large this is so

But by then I had had enough of being abused, taken for a ride, treated like a piece of dog dirt
~So by then I took what I wanted , and when I wanted.
If anyone was abused then by me it was Barry!!

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Barry and I were therefore friends for 4 years and I never considered having sex with him as basically our friendship was too precious and so rare that I felt that to do so would change the equality of it and ruin our friendship.

He didn't try and in fact was unlike me, he was someone who did not ever have random sex.
He had only ever had sex with 4 people in his life - he was over 30 by then- and i knew he would not have sex with me unless we were in a long term relationship and i did not want to alter our friendship as i did not think I ever wanted a long term relationship

And he seemed to want me as a friend only.

Then in 1984 he decided he was bored with living in London and the shallowness of his life in London when he was home from sea, basically drinking partying, smoking a lot of dope, and having fun, or rather trying to have fun. But in fact it was not fun, he felt empty and wanted a different life.............................

so he decided to move deep in the country as far away from London as possible and bought a small cottage in Cornwall.

While he was preparing to move I realised I could not live without my now best friend and I loved him.

But I was too scared to act on this and did not want to change or influence his plans as I did not think it fair to do so. And did not know if i could have a proper relationship with a man, and knew this was all he would ever want.

So I remained his friend, supported him to move to Cornwall, 250 miles away..

I also had a VERY senior and well paid job as a senior youth worker, I was in my 30s at the top of my career, owned a lovely flat in Wimbledon London had lots of friends and a good life and knew that in backward rural Cornwall I would never get a job at this level again.

But I missed him so much, he missed me, I visited him in Cornwall every holiday and he visited me for 2 weeks when home from sea.

One day when staying with him in Cornwall we had sex and I realised I really loved this man.

He did not want to change my job or risk my life so he didn't put any pressure on, in fact too accepting and laid back to the point I did. It know if he felt the same.

It turned out he did not want to pressurise me so until 1986 we conducted a long distance relationship.

Seeing each other only every 10 weeks or so when he was not at sea this was a time when there was no Internet, phone calls were so very expensive etc and he was at sea with no way of contacting him for months at a time.
It was a totally different world than the one we all live in now!!

I continued to have on off relationships with others, but I was very unhappy and missed him.

In the end I suddenly had enough. In the space of a week I suddenly decided to throw my life as it was he to the winds

I decided to sell my flat, leave my job and just risk everything and move down to his cottage in Cornwall just to be with him.

Which I did.
In the space of 3 months I sold my flat left my job - I had been there 7 years and had a job at West 14 Girls House, for many years.
I may not have been a great employee.

But I di my ery best and they did not sack me and I truly loved the girls and yojg women I worked with........so if my managment did not sack me that was their problem and I thought I was vry good value for their money??

So that was their problem at it but they would have found it hard to get rid of me???? But I gave this secure job and a job I loved......because I wanted to be with Barry

- So I sold my flat and I then bought an old Luton van, packed absolutlely everything I owned into it and my 2 cats and drove 250 miles to Cornwall.

I was risking everything as he would not commit - turned out because he knew I would not be able to work at the level I had in Cornwall and he was a friend as well as a lover and did. It want to destroy my life.

But I did not know this so drove with everything I owned to his cottage in Cornwall not knowing if he would not want me there.

Luckily he did, with all his heart.

He is just not a risk taker and would also not do anything to risk my life either.

The rest is history. I was right I never got a job at the level I was at in London in Cornwall, I did work for 14 years as a youth worker here but it was a very sexist work environment. Things changed but too late for me.

But we sold his cottage bought a rambling derilict smallholding together with my flat money and his money from the sale of his small cottage in Ashton.
We have been renovating it now since 1986 - a lifetimes work .....for what I now wonder ????

We had a daughter in 1989 - after many attempts ansd miscarriages ........manybe I should not have tried but we so wanted our daughter , a child of our own that was begat from us both - it was hell the fact I miscarried several times and Caja's birth.....well several times and I so neartly died .........we are both so very lucky to be here now
.

.......but I am so very greatful I had her.She is amazing. I just hope one day she reads this and will feel the same too??

We also had foster child before Caja but one after wards and it is now 2011 and we are still together and always will be.

This is why when people question that because he was unfaithful just once during a stupid drunk moment when working away at sea for 6 months, lonely and probably because he was 50 and had never sown any wild oat sexually so had his only moment of madness in his life, and and people question it was more than once and he was a serial adulterer, I know this was not possible.

I know him so well and know that sadly that brief encounter with that woman in Brazil was the only risk he has ever taken in his life and how much he regretted it even before it was finished .

And I am so sad for him that unlike many he could not even get away with one fling , as he got HIV and gave it to me and lives with guilt every day despite the fact I have long forgiven him and I do not want my lovely husband to feel guilt.

And we are in this together to death do us part , just as we always were and HIV alters nothing in terms of our relationship.

2012-01-28T16:10:00.000Z

Me??My health problems are minor compared to Barry's so I truck on
But I have an ankle fusion, psoriasis and had severe problems with my hands for the last couple of years. Makes even typing this blog so very difficult - which is another reason I do not update it.

But i have found out why thankfully ? As I have been diagnosed with Kienbocks in the last 15 months. I had an operation to relieve it in November 2011, but it did not do a lot and it is incurable - like HIV sadly - http://en.wikipedia.org/wiki/Kienbock's_disease

It seems that in my case Kienbocks could be due to having undiagnosed HIV ? But who really knows? Not my doctors it seems?
All I know is I have it and life is now changed forever for me!!
Well tha is all the sob story you will get here

I wanted to fill you in, but we both truck on
And I having done so I will resume by blog updates on a more positive theme from now on.

Barry - prostrate cancer - me Kienbocks - and its Saturday and we both still have HIV

2012-01-28T15:59:00.001Z

We have been quiet for the last few months as we have had a lot to cope with........... And it is ours to cope with who cares really except us?

But I wrote this on facebook, so I may as well share here?
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My husband has a history of early Prostrate cancer in his family,his older brothers have it, his dad died of it.

He got a negative reaction here in the UK when he asked to be checked for prostrate cancer 2 years ago . He is now just 60, he was then 57. He was told he was worrying about nothing and he was too young to have prostrate cancer?!

His internal examination by his GP was very so brief and showed nothing it did not seen enlarged to this doctor, but the PSA test was high.

But he was told at his age he would/COULD!! not have it!!

But we knew better and fought and insisted it was investigated further.
He eventually had a biopsy - which is the only way of really knowing!!

It turned out he had stage 3 prostrate cancer - probably not outside the prostrate but about to be and of an aggressive nature.

He has now just completed Brachytherapy, we are waiting to see if he is clear?

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We have had such a fight with our doctors !!

It has been so hard I just can not tell you how hard and I can not go into the full extent of our battles over the last year or so, just to get Barry treated at an early enough stage.......but believe me the doctors certainly thought they knew better than us......and it turned out they did not at all!!!

I of course do not have prostrate cancer but I am sure affected by it !!As I have been Barry's nurse, companion and only support through it all.

Barry was able to have Brachytherapy which is less intrusive than regular radiotherapy and may indeed be cured - we do not know yet we are waiting to find out.
It has affected him in so may ways that I can not go into , but just let me say , the last year has been very difficult to say the least.

And he is in fact now impotent - as so many men after treatment for Prostrate cancer are.

Brachytherapy is supposed to affect sexual function the least but all do and Barry was not one of the lucky ones.

We have tried everything now, Cialis, Viagra and Levitra, he can not bring himself to inject his penis and I agree if this is nt for him =, it is not for us!!!!!! and as someone with prostate cancer he gets all this free in the UK,

But nothing works. This may seem a small problem, and of course it is not compared to living and surviving prostrate aor any cancer but sex is part of a quality of life for us all?
ISNT IT!!

And believe me it is a very big thing for a man , especially a man like Barry who is so full of life and wants to live it and is only 60!! Men can begat children and be potent until their 90s , so to be impotent from 58 is a very big thing!!!

So this will may improve but has not so far and and I will live with this happily but he has more problem with this than I?

No good for either of us - but it is better to be alive

SHAME ON ME!!!

2012-01-28T15:27:00.001Z

I have not written on here for so very long ................

SHAME ON ME!!!I started this blog thinking - stupidly? - that to write it may help others avoid what we have, by avoiding HIV, and that I could aise awareness.~but I have been so very disheartened as I am no longer sure that those who do not realise hat they have a risk want to know they have any risk?

That so many just want to believe that HIV could NEVER affect them and could never be part of their lives?

So for the last many months, I just kept thinking what is the point, who is interested anyway? I do not want to dwell on what we face and who cares anyway? - we care but it is our stuff and ours to face

But now I am back. This is our record for us, and our friends and perhaps for our daughter who we so love despite the fact right I know she does not think she wants to know right now ansd mybe she never will?? But this is us , her parents, the ony ones she wil ever have.

And I did not have a good story either but while sh may not want to know now, I know many years later I would so have wanted to know about how my parents saw it -warts and all - .

So here goes.......................................................................

That I have been quiet does not mean our life has been quiet

2011-06-19T17:09:00.001+01:00

Since I last posted much at all we have had the following happen .
Thinking we were OK, that yes we both had HIV but since Barry got well and I felt better since we went on the ART with the HIV meds we had a 'weather window ' a reprieve so we could expect to be well for a few years yet?

So we continued to live our life to the full as always.
So we started to demolish half of our house to re build it as it was falling down and we have meant to do it for over 25 years
This was a very big mistake .

As shortly after we started Bary got diagnosed with Prostrate cancer and had to start treatment for this .
Prostrate cancer is not linked to HIV so he may well have got it anyway. Bu tit is very young to get prostrate cancer and people that live with HIV are 50 to 70% more likely to get cancer of all kinds, not just AIDS defining cancers.

So who knows if he would have had prostrate cancer if he had not had HIV?

Then I found I could not use my hands hardly at all and got diagnosed with Kienbocks http://en.wikipedia.org/wiki/Kienbock's_disease

Which is a form of avascula necrosis , which some research thinks is linked to HIV and the ARV meds. http://gateway.nlm.nih.gov/MeetingAbstracts/ma?f=102241441.html

But the jury is out and more research needs to be done .
But basically for me I think it has to be linked.

But who knows?
All I know is Bary is now fighting cancer, I have Kienbocks - which is not good news considering I already have had an ankle fusion and have bad knees and difficulty walking so this was the last thing I wanted to happen .

But life goes on
What choice do you have?

HIV is for life - HIV is a huge learning curve.

2011-06-19T16:36:00.000+01:00

New beginnings - HIV is a huge learning curve

I have not updated my blog for a very long while.
I apologise but in in the meantime I have been learning , learning about what living with HIV is really all about and how fruitless anger is. It does not matter who you got HIV from, we all got it from someone, and the chances are that, unless they are one of the very few, they did not want to get HIV either??

So in the last few months or so I have been quiet and learning.
Learning what it really means and from those who have been there long before me HIV had its 30th anniversary this week.
And you know sadly it is only now sinking in for me that HIV is my life now, and forever

What we face as women Living with HIV in the UK

2011-01-19T17:27:00.000Z

Rather than reinvent the wheel I thought I would post here a speech given at The Sophia Forum Round Table meeting, at the House of Lords by Silvia Petretti on the 18th January 2011.

Silvia is a woman living with HIV who I count as a friend who I met through the National womans group PozFem UK.
She also works at Positively UK as Community Development Manager.

This speech gives a good idea of the issues facing women who currently live with HIV in the UK

http://hivpolicyspeakup.wordpress.com/2011/01/19/visibility-voices-and-vision-a-strategy-for-women-and-hiv-in-the-uk/
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I would like to thank the Sophia Forum for inviting me to speak today, and for all of you for being here.
I am a woman living with HIV and I work at Positively UK as Community Development Manager.

At Positively UK we speak to hundreds of HIV positive women every year. We meet them in support groups, through the help-line, we meet them in hospitals and during outreach to prisons. In spite of all of our efforts we only reach several hundreds of the over 21,000 women who have been diagnosed with HIV in the UK. And reaching those women is becoming harder and harder as funding for women’s specific services shrinks.

As you have heard from my colleagues as women living with HIV we face many challenges: Sophie has highlighted the challenges of those of us who go through the Criminal Justice System and Angelina the different layers and complexities that HIV adds to motherhood.

From a strictly bio-medical point of view many of us are doing really well. And I have heard so many times that HIV should be ‘normalized’ and treated like diabetes. But for most of us who are living with HIV in the UK I know that it takes more then pills to live with dignity and safety.

An area in which positive women find enormous difficulties is the area of relationships.

This is a sphere of particular importance for women. Of course every human being has a basic need of feeling loved and appreciated. However, this need is amplified for women. The way gender plays in society means that women still gain a lot of status through being in a stable relationship and having children. HIV on the other hand comes with an immediate loss of value as a person in society, and this on top of other socio-economic disadvantages women face.

The pressure of being in a relationship, combined with the anxiety of being rejected because of our HIV status pushes us very often into dangerous relationships.

2011 has started with some stark reminders of those dangers. During the Christmas holidays I was threatened with violence by an ex partner: the fact that I am a woman living with HIV, made me a potential ‘killer’ and of course of dubious morality. This was very much at the centre of the verbal attack and the threats of physical violence. In my ex-partner’s mind I obviously deserved to be treated like that because I have HIV.

I was shaken, and hurt, but thanks to the support of friends and family I was able to feel a certain degree of safety. For many women for whom HIV is still a dark secret to be protected at all costs, it would be impossible to talk to anybody about such an episode and this sense of safety would be unattainable.

When I returned to work I found out that another positive woman, a close friend, had been physically assaulted and beaten. Within the first few days in January I also received a phone call from a young positive mother who is in an abusive and violent relationship, which is profoundly damaging to her and her baby.

The truth is that hardly a week goes by at Positively UK that we do not hear of a positive woman being emotionally blackmailed, abused, threatened or physically attacked.

I have used my personal example because I want to dispel the myth that violence against women is something that affects only ‘certain’ women: the 'vulnerable', or the ‘African Community. I am afraid that among women with HIV in the UK this goes across class and colour: it’s part of our reality. I do also recognize that poverty, immigration issues, isolation and fear of HIV status being revealed: create insurmountable obstacles that lock positive women in these dangerous relationships.

I do not have a research paper to back this up. I have 10 years of experience working for a women’s helpline and facilitating support groups.

On a global level the UK through Department for International Development has widely acknowledged the strong link between gender inequity, gender violence and HIV. However this link has never been acknowledged in any national HIV policy strategy here within the UK.

At a very personal level I have asked myself: why has this happened to me? why is this happening to us as positive women? Are those men just individual ‘monsters? Who else, or what else, has a role to play in this? And I believe it is important to recognize that these are not isolated episodes but they continue to happen in the context of our societal views and attitudes towards women and HIV.

Today I would like to ask you here in this room, many of you being influential policy makers: what is your role in shaping those attitudes? What is your role in stopping violence against HIV positive women in the UK?

Obviously when HIV positive women face such complex and difficult circumstances as those I and my colleagues have highlighted it is not a surprise that our health, physically and mentally, is affected. Research shows that women have worst outcomes in regards to HIV treatment. This is due to several factors, including low numbers of women in clinical studies, and lack of studies focusing on women’s issues outside pregnancy. It is no wonder then that there are still only about 30 of us women who are fully open about our status here in the UK: just 30 out of about 33,000 women who have HIV here.

However, I know from the work we do that peer-lead support enables women to regain a sense of self-worth, and this has a positive effect on our mental and physical health. Peer support is important in enabling us to disclose our status, or in giving us the confidence to leave abusive or violent relationships. Being more open about HIV improves our adherence. Adherence means less resistance to treatment and no need to switch to more expensive regimes. Being successfully on ART, with an undetectable viral load, combined with openness about HIV status, also creates the foundation for preventing onward transmission. And we all know that new infections are very expensive to treat, as well as a personal tragedy. Finally, when women are appropriately supported in their psycho-social needs they require less face to face contact with their health-care providers. In brief: peer-led support for HIV positive women not only has health outcomes, but makes economic sense.

To conclude I would like to point out some recommendations which will allow us to continue to do our work, I also hope that this session will enable us to hear your ideas on other ways forward:

Firstly, we need some robust evidence to back our work. We need resources to develop participatory research around how gender, HIV related stigma and gender violence affect our lives as well as research on the effects of peer-led interventions.

Secondly, we need better partnership between the scientific community and HIV positive women. Scientific research, including clinical trials, should involve and support HIV positive women at every stage, from formulating questions, to collecting and analyzing data.

Thirdly, and most importantly, that support for women’s centred services and networks has to be long term and sustained, so that we, who are directly affected, can develop and maintain the strength to challenge negative societal views of HIV positive women. Stigma will end when we are visible.

Dairy of a rural HIV Cyber Activist

2010-11-27T13:04:00.000Z

I have decided that if I need to define myself at all this is what I am. As in the very rural area I live in there are few HIV agency or organizations and none that wish to work with me in my aims to challenge HIV attitudes, stigma, raise awareness and educate predominately amongst HIV neg people. So all I am left with is the virtual world of Facebook, twitter and blogging from behind my own computer in my remote rural home.

From the very moment I was first diagnosed HIV, right from the start I wanted to ‘do something’ to make a difference. This is apparently not an uncommon reaction to being diagnosed HIV poz and many people shortly after diagnosis fling themselves into voluntary work usually with or to support other HIV people or even manage to get paid jobs with HIV charities or organizations

But I quickly realised that my aims in this area were not did not always gel or sit nicely with the aims of other HIV poz peoples aims and endeavours in this area.

As when diagnosed I knew no one who also had HIV and literally thousands online and in person who do not have HIV. And while I’ve met a few who are HIV+ since, due to the clash of fundamental core reasons, beliefs and rational between what I want to do and why I want to do it I don’t and I may never have any close friends or know many that are HIV positive too. The reason for this is something I will try to explain and expand on here.

As my interest was not ever and is not to inform those already HIV positive.

As put simply and it is a lot more complicated than this, I figured, which later turned out to be true, that if you have HIV in a very short time you know more than the general public about HIV but sadly apart from treatment options and research into cures and treatment, what you know is no use to you as in many ways it’s too late for you.

Nor was or is my interest to primarily to support others like me who are HIV positive.

This does not mean I don’t want others to have support or that I do not care. As I do care very much that those who are HIV+ locally, in the UK and anywhere in the world get the best treatment they can and are supported in every way they need.

Also after all myself and my husband are HIV positive, indeed we were both diagnosed when ‘officially’ we had AIDs and my husband has already been very ill, been hospitalised and had PCP, an AIDs defining infection. And understand the need for support when you are HIV+ and wish there was more and better support, especially emotional support and will champion anyone who offers this.

Sadly both my husband and I have not managed to get any emotional support that works for us. I am not saying that people have not tried so it may well be a lack in us not the very few services we have been offered, and while we at the moment manage to just about rub along and cope psychically and practically with little or no support right now, we both know there will come a time that one or the other of us or both we need lots of this kind of support. All I can hope is that when this is needed those that can do this and for whom it is their skill will support us.

However this is not my skill. I have always been an activist or probably more of a pioneer, as one friend described me., in lots of stigmatised issues and campaigns before I ever had HIV.

And a pioneer in stigmatised issues does not make many friends, they are often feared because they speak out and refuse to do otherwise and cannot be controlled. A ‘wild cannon’ is how I have been described in the past and while this is not totally so as I do nothing without at least considering or knowing what I am doing and not without thought and considering the consequences, this is how I am often viewed by others.

Those like me who take in all information, weigh up what they think and still speak out with what they believe and are not deterred from this by others views and so often ‘go against the grain’ are often disliked, can be feared even by those who also share the same issue. Many that do at first befriend you when it is realised that your voice can not be tamed disassociate with you or don’t want to know you.

And while this is at times so for other issues at I have found it completely and always true when it comes to being an outspoken activist on HIV with HIV living in a rural area, or perhaps living anywhere.

And so being an activist like me I have found often makes it impossible for me to support or even be liked or associated with by other HIV people. I get far more support ironically from HIV neg people with very little idea of the issue than I have ever received from those HIV positive or those working to provide services for those HIV+

I understand very well why and maybe at some future date I may explain but for now I just have to say that this is so.

I do find I can be virtual friends online with those who feel safe because they are never likely to meet me or with other activists that live in other parts of the country. But in terms of having any face to face support or just anyone to talk to and share situations and bounce off of with ideas and views etc from any other HIV+ people that live in my rural county that I could meet face to face, so far this has proved impossible.

Most I meet in person and not online with HIV are scared of even being seen on the street with me in case their own HIV status is outed by association. Others are scared I may, while using others stories to make an awareness point that I may accidentally expose them.

The facts are I do and will not do either as far as I can avoid it but at the same time I will not be silenced or muffled and attempts have already been made to do this.

But that by association with me their own status was exposed would not happen as easily as other local HIV poz people far as one I think about what I am saying or writing and the consequences to others as well as myself and I just do not understand why so many think I do not and seem to assume I talk/write completely without thought and say anything that comes into my head? All I can say is yes I am impulsive at times especially when upset or fired up over an issue but those that think I do this as a regular thing just really do not know me or who I am. Everyone makes mistakes sometimes, but if I remotely put another’s status in jeopardy of beign exposed if they are not out and have not given me permission, I never do and never will do deliberately. But everyone makes gaffs or mistakes as much as they try to avoid it. But it seems that in the eyes of other people that are HIV+ but not out there is not room for me to make the odd very minor mistake that I will put right as soon as I am made aware of it.

I understand why, and accept that this is so. As while many non out HIV people think I do not get it and do not worry about what people think of me or whether I am judged or stigmatised and do not get their fear. Believe me I do and fully accept why they may not want to know me. But accepting this and understanding does not mean I am not often lonely and hurt by this lack of trust and friendship of me from other HIV+ people

And also as I know few HIV poz people locally that I would ever meet face to face and while I may have few close friends - especially since I found I was HIV and have become so outspoken. As I have lived where I do in a small rural community for nearly 26 years really do know by acquaintance at least and they know me, hundreds of people who are HIV neg so no one would even think if I was talking to someone or was with them on the street or in a café, pub etc that my companion or the person I was talking to was HIV poz.

And I assure all that when using others stories to illustrate a point to raise awareness I only deliberately use the stories of those I have permission to use and unless I have express permission never names or where they live. That some that have not given their permission have assumed I was talking about them when I was not, I have to say this is their own internalised stigma and paranoia and nothing to do with me as I never out anyone deliberately.

But oh yes I am not perfect. I am sure I have made some mistakes in this and will again. But if I am to try to do what I want to do and raise awareness and fight stigma it is a risk I have to take, and one that they have to take if they want to know me. But I do think before I write or speak and I NEVER deliberately our s anyone’s status unless they are fully open themselves.

One day I hope one day to meet like minded people with HIV in Cornwall who are open or sufficiently open about their status not to be scared of me, and can tolerate the odd slip up in the pursuit of raising awareness but so far I have not.

As you can imagine this is a very lonely place for me to be right now

Anyway as said my interest or rather skill is not in supporting others with HIV but in challenging attitudes, educating and raising awareness amongst HIV negative people in the hope that they will ‘get it’ remain negative and also cease to stigmatise those of us who have been so unlucky as to already have the virus.

To do this is counterproductive it seems to being friends with other HIV poz people. Well it is in my very rural area anyway and to a degree elsewhere . And even counterproductive to me even working or volunteering with my local HIV charity, and other charities etc further afield as their main concern remit s to support their ‘clients’ and not to raise awareness and challenge the attitudes of HIV neg people.

Each to their own is what I say. We all have our interests, skills effectiveness and paths to tread. Understand I tread mine with thought and take risks that I know will alienate me with thought and because I want and need to. If you cannot be my friend and support me leave me alone to do what I have to do.

I will not interfere with your path – do not interfere with mine

HIV philosophy - does it exisit?

2010-10-07T15:56:00.002+01:00

Are you religious? Or do you muse philosophy as I do at times?
HIV poses interesting questions for both religion and philosophy

Well in terms of religion I am in fact a believer in that there is a something for sure. Butwhile I have tred for my whole 50+ years of life I am not yet convinced of what it is and may never will be. So I'm a not sure what as yet and still questioning .
So I am agnostic - not an atheist - There is a real difference - look it up on Google!!
Philosophy - well it has not yet caught up and encompassed living with HIV as yet - it should though!!

But the main spiritual/philosophical issue I debate in my own mind right now re the HIV virus is ??...................

Does the HIV virus has a much right to live and survive as me or any thing else on this planet?

In a way, as a entity created on this planet Earth - the wonderful planet that gives and sustains us all life - to my mind has the same rights as any of us, animal or vegetable - doesn't it?

Humans only put themselves at the top of the tree because they wanted to and due to their social intelligence and self awareness could get away with it ?
It does not mean it is true at all does it ?

There is no logic in anyone believing that humans are more important than any organism on this planet or even in the universe is there?

There is NOTHING to say we as human beings are more important to survive than the HIV virus or anything else in this finite bubble of that blue planet Earth has produced to share our lives - is there?

If we believed this, it would be total arrogance wouldn't it?

As a wider and philosophical issue, I also believe this may be the case ?

But on a personal level if I could kill this HIV virus dead, right now and today, if I had the chance I would not hesitate for a single moment !

The Killer Virus Parasite HIV

2010-10-07T15:34:00.006+01:00

This is how I see HIV - To me it is a Parasite Virus that Kills.

Sure you will all be so very bored if you read this, so please don't read it ! Just stop now! It may be rubbish but is my blog so I wanted to explore this.
So felt I had to write it as this is how I currently see the damn virus that is HIV

HIV is a retrovirus. So what is the HIV retrovirus? - put in my own- very - lay persons words and my own limited understanding?

A retrovirus - - is a virus that takes over cells and becomes part of them and replicates itself to be become part of your own cell system : http://en.wikipedia.org/wiki/Retrovirus

So basically a HIV in my understanding/view is a 'virus parasite' but sadly unlike some/well many retroviruses one that, if untreated, eventually kills its host.

And there is strong evidence that monkeys were an original host to HIV but it has now since it trans-species jumped it has mutated and evolved so that humans are now, currently its biggest and most successful host.

Actually is seems to me that humans are a far better host than Simians. As unlike simians ( monkeys) we have no immunity to this virus, and unlike simians we travel widely outside our immediate social groups

As there is now overwhelming research evidence that the HIV virus has lived with, and alongside, simians (monkeys, chimpanzees etc) for thousands of years and thus evolved with them. And that therefore that a mutual impasse was reached in terms of fatality to its simian host and the ability to spread widely outside of unique social groups of simians - that is until it jumped species to us - humanity .

So evidence would suggest that we humans are comparatively a very new host to HIV !!!
And we humans travel widely outside our family and social groups.

Unlike Simians who did not have the advantage of aircraft and cars etc and so stayed comparatively in very isolated in small groups. So research evidence suggests that HIV infection among simians were very contained within fairly divided and remote groups.

Not only did it not spread widely when only simian the HIV virus was not often cross infected between groups and thus not as easily mutated as it is within humans.

But we as humans now have the HIV virus as it has long made the jump to our species!
And we - unlike simians - interact widely outside our immediate social group.

We, interact, reproduce, have sex just for fun etc, outside our immediate social groups and we travel widely - in fact humans from our origins, just look at how we spread out even in the stone age onwards? Travel is and has been a fundamental human drive/need too!!!

Humanity has always traveled widely, not just within our own continents/countries. Humans have traveled for thousands of years .

But now due to air and other travel , we now travel all over the planet and have done for at least 30 years.

So basically we are so totally fucking ace at passing this virus it on to others outside our immediate social group? So we are the perfect host to this virus HIV? Amazing it did not find us many thousands of years before it did? Isn't it?

So do you want it to win?

As if the HIV virus had consciously tried it could not ever had found a more effective host to jump to than humanity, could it?

We have to beat this one!

i.e HIV is an RNA virus that is replicated in a host cell via the enzyme reverse transcriptase to produce DNA from its RNA genome. The DNA is then incorporated into the host's genome by an integrase enzyme. The virus thereafter replicates as part of the host cell's DNA. http://en.wikipedia.org/wiki/Retrovirus

So basically it takes over key cells in the hosts body - And so I am just currently and so very unfortunately just one of this viruses millions of hosts - and it is so clever it takes over cells that are fundamental to that hosts very existence. (immune helper CD4 T cells in this case)

But HIV is a very 'clever' virus. No I am not saying it is at all a 'thinking' organism. As I am not as yet demented!!! Well not yet, nor have lost my mind, well not yet!

So I do not credit this virus with any' intelligence'! Well not as we as humans would see intelligence.
But it is a retrovirus and one that is determined to survive and one that will kill it's host if unstopped/untreated.

But it needs to pass itself on and survive. And us humans are such good hosts that we so easily die of it. As our immune system can be so easily overwhelmed by it ............................

So the virus has needed to evolve - and has - so does not kill or make its host very ill straight away
- that would defeat its aim - hence the often long latency period in humans. Often between 1 to 10 or more years for some.

And this particular virus has actually so very cleverly evolved to infect its hosts in the main through sex and reproduction.

By sex I mean any sex with anyone, gay, straight, bi, whatever............... the virus makes no discrimination................ and neither do I.

Only humans discriminate or stigmatize. We all have sex with someone or at the very least play with ourselves! Anyone who says they don't ........well I guess I can believe that some don't - but very few - but even so they have to put their sexual energy's somewhere?

For humans as a social and group species, we are just not designed to be celibate. Sex is a fundamental and great and to be celebrated part of being human........OH dear - I digress as always!!! Well its my blog. if you bother to read it is up to you!!!

Anyway by reproduction I mean childbirth and breast feeding - and feel what could be more insidious and awful than this!

i.e That if a mother wants to do her best for her baby. And do what is under any other circumstances than if you are a mother with HIV is the absolute best for your baby - which is......................

to have a natural birth as possible

and not a Cesarean if you do not need one to save the babies life

to breast feed Not to take any strong medication while pregnant or in childbirth

Yet if you are a mum with HIV, you can not ever do any of these totally normal and natural things if you are to ensure your babies health? isn't HIV so crap??

As if you are to ensure your child is born HIV free - which any mother will want to ensure

you are probably needing to take medication while pregnant
have a Cesarean in most cases
and you can not ever breast feed

( that HIV does also infect humans through intravenous drug use, and blood products etc is not part of its cunning plan! This only happens because humans do other activities for enjoyment, ratification or survival - medical or other exchange of bodily fluids - that are not actually biologically programmed,
Due to the fact that humans have an unique 'self determination' and inventiveness' as a species on this planet that strays from what is set out for us as a living organism.

This 'eccentricity ' in humans the HIV virus did not of course plan for but it did take advantage of this when it was presented to it on a plate.

No a parasitic virus as it does not share our type of intelligence/self awareness, so it did not plan for us humans being its perfect host , but took full advantage of it when it found us - well his may not make sense to you but it does to me!

So of course if this HIV virus made those who acquired HIV instantly ill and die quickly, it would not achieve its aim.

Which is merely - and only - to infect other hosts and live on.

And so the virus so cruelly gives many of us a bit of a breathing space - a latency period where we feel if not great, we feel OK.And so we continue our lives, continue to reproduce, have sex - of any kind or any sexal orinettion -

and both are such fundamental drives - and if we do this and do not know we have HIV...................................

We may have infected others, and maybe - if we do no find out we have HIV in time - any children we may have.

So this virus HIVis to my mind is so cruel!!!
And this parasite that is HIV really and truly has it taped - doesn't it!!

As it knows how to bide its time to infect the most of us it can
As if we became ill with HIV as soon as we were infected HIV would all soon die out with us as we died of it.

As no one wants to have sex or reproduce when ill or dying of AIDS!

Believe me when my husband Barry had a CD4 count of 8, PCP pneumonia,projectile diarrhea and other infections and I technically had AIDs because I had a CD4 of under 150, could not eat without vomiting, had galloping diarrhea, felt terminally tired ......
neither of us could have raised an arm at times and certainly could not have raised anything else to have sex with!!!!

So basically this parasite, this virus, is very clever as it just bides its time.

It gives us a breathing space once we are infected. While it bides its time and gradually reproduces. But does not reproduce for a while to the point where it takes away our health and therefore fundamental will to have sex and reproduce.

A it t is soooo very clever ........as it gives us enough time since infection to feel the urge to do this and thus pass it on - this is where this virus, as humans, has us by the nail!

As while we are able, humans, not all but most, want and do have sex and want and do have babies!!! And why not its our right and our main drive as a species.

Probably I am talking total rubbish?? But this is my blog!!

And this is how I see HIV. As a so very effective parasite that is a virus.

It is not intelligent - it does not care - it just wants to live and reproduce and needs us as a host to do this.
has it a right to live?
But I want to live a bit longer too. So difficult !!!

HIV+ Women are Evil Criminals

2010-09-10T10:41:00.012+01:00

*draft post - will firm it up when I have time

For my sins I use Twitter. And increasingly I find I am twittering/tweeting back to those who seem to think that anyone with HIV, especially women with HIV, are criminals and deserve to suffer and be punished for having HIV?

And that it is often seen as fair game online and in Twitter to treat any women even remotely suspected of being HIV ...... as potential trash!
(and that all those who sadly do have HIV as proven trash )
That outing their HIV Poz status - or anyone HIV+ - even when it may or may not be so - is totally fine?
And that it is anyone's business to disclose another's HIV status??

And if a that a woman is famous in some way then it is always totally fine to expose their perceived status on Twitter or anywhere online - even if you are totally wrong and they do not in fact have HIV!

And that it is totally fine to regard all women HIV Positive as evil?

So often in Twitter, and elsewhere online, we are called whores, hoe's etc
( in America the very horrible word they seem to use for this is Hoe's !!)

Often we with HIVare portrayed as potential murderers and basically criminals!
I was asked by a friend why this may be so as she said........

'Why do people hate people with HIV? They should be showing compassion not hatred. I don't get it?'

A very big and very valid question - as I have HIV and do not get it either or at all!

And since the very first day of my diagnosis I was made aware of this attitude. Even though my diagnosis was so very 'out of the blue' and so very unexpected, I have been confronted with this attitude right from the very start and have been trying to get my head round it ever since diagnosed HIV+.

So to avoid re- inventing the wheel below are some of my thoughts so far on this I wrote back to her.
_____________________________
This is a very big and complicated question.

One that I am exploring and have no firm answers as yet. But I do know that this attitude exists and big time and worldwide.

Increasingly there are those in my very short experience, that are very angry with all those that live with HIV. It is is in my opinion driven by personal fear - of HIV - Why?
To be fair the prospect of getting HIV is so VERY scary! And rightly so! As basiclaly it is scary and a terrible thing to have to face.

More than even those that know us that do have HIV really seem to understand .
But we did not want it either - blame does not have a space here ?
__________________________

Sex and Death

My view is that sex and illness taps in to humanities deepest needs coupled with our most profound fears?

So sex linked with illness and possible death is a so VERY powerful of combination's
Maybe one of the most powerful combination humans and most species on this earth can face?

So HIV being mainly? sexually transmitted, so neatly combines the two? Just my very humble opinion!
i.e

Sex being one of the hugest of human drives ( drives of any social species is based on the drives to have intimacy and to to reproduce) so HIV or can be also linked to many's biggest fears and - at times - phobias.
Sex is a very basic drives of all human motivations - therefore sex linked with a a potentially fatal illness is the biggest driver of irrational fear, phobia, attitudes you will ever care to find.

But that this combination has may have led to the current increasing, ground led, 'movement' to criminalize those with HIV - to regard them - all with HIV - as potential criminals - is so very shocking to me.
Don't people think for themselves - have their own opinions?

Where?
I have been told, in person, by many African women and corresponded about this on the web ( but I have never been there but have to accept what they say That this appalling attitude has existed in places in Africa for some years since, basically since HIV was understood there as to be a i.e STI, sexually transmitted?

And at first mostly a view in African and a few other communities worldwide where HIV among heterosexual people was more prevalent - and also there was concurrently a fear - worldwide sadly - of gay men as an HIV risk to all i.e heterosexuals i.e if they crossed 'boundaries' and had sex with those who were not predominantly gay? But this was not as much seen as a fear to the heterosexual community in the beginning ? For many years in US.UK, Europe etc HIV was seen as only a gay issue or the problem of those who used intravenous drugs, sex workers etc

But then, from my research into this ( sure I may not come over as particularly educated but believe me I am and I have researched this extensively!!)

The view that hetero people with HIV are a threat and deserve to be criminalized and women marginally more than men, started to change. It seems it was always a view of some but as HIV became not ' just' something that most thought only to exist in Africa among hetero people and in gays or drug users otherwise this view started to change.

This view is now more widespread and gained credibility.

Often at first, it seems to me from my research to be mostly a view only a spoken attitude among heterosexual black Americans mostly towards women that may - or in fact may not have had have - HIV.

But from what I can see it has now spread worldwide.
It is even happening here in the UK among black & white heterosexuals and everywhere in the world now.

I started first to hear of this attitude almost straight away when I was first diagnosed and even from those down here in my very rural area.

When first diagnosed i went to online groups to learn ow it was to live with HIV and to cop.e

To start with I was asked a few times both locally and online why did I not take Barry to court for giving me HIV - the logic was even while he may not have known he was HIV he was a seaman & did know he had been unfaithful and did not tell me i.e for grievous bodily harm.

Then I met someone a white male at my local HIV charity who was in the process of taking the partner to court who he got HIV from even though she did not know she had it ( he also used language like whore, evil, dangerous, murderer etc towards her too )

Then I started to hear from women through Poz peoples forums worldwide who had been verbally or physically abused for trying to negotiate safer sex because they were HIV positive - and this was before they even had sex with that person , they were just trying to be honest and tell them first.

Then I heard from others who their partner had blamed them and been verbally and sometimes physically abusive when they found out they both had HIV.

Yet some of them told me - that like me - they have never been unfaithful - others told me that they had but their partners had too?? others that they did not knwo they were HIV positive, others that they have no idea who became HIV positive first ( and of course what does this matter anyway??)

But whatever the situation their male partners blamed them and at times beat them up!!

But of course I do not care who got HIV first - that is not the point?
Everyone with HIV got HIV from someone? Someone who equally does not want it, there is no room for blame for me in the fight against HIV.

At first I thought this was a minority opinion but sadly then gradually I realized how widespread this attitude is, and vowed to try to do my best to combat this very dangerous development toward attitudes to those with HIV

My View

ITS A VIRUS - A VIRUS JUST LIVES TO EXIST IT DOES NOT CARE WHO IT INFECTS AND WE ARE ALL INNOCENT IN MY VIEW.
THERE IS NO GOOD AND BAD HIV/AIDS JUST SIMPLY PEOPLE WHO HAVE HIV/AIDS?

I have tragically met several of those online i.e forums, FaceBook etc who tried to prosecute their partners for 'giving' them HIV. A hiding to absolutely nowhere except their own trauma and grief in my opinion.
One his partner of many years even though he had no proof she knew of her infection, and she was infected by someone else before she met him

So while this attitude does seem to have started at 'ground level 'it is increasingly affecting laws and policy higher up and this has led to an increasing number of prosecutions or attempted prosecutions world wide for passing or attempting to pass HIV on.
Those with this attitude regard those with HIV+ -even if it is their long term partner who they said before HIV they loved - as a risk, dangerous and dirty, even evil.

Often it is sadly for me as a lifelong feminist - women that are most regarded like this, men more often seen as victims by both genders and women with HIV as 'whores'.

You would have though, from what I have said, that it would be mostly men with this attitude? and men who do not feel it is their responsibility to protect themselves and use condoms etc?
But in fact - more worryingly to me - many with this attitude towards women with HIV, are women!? more are women in fact.

The fear that drives this attitude in women seems to be the fear that 'their' men may have sex with another come and back to them and infect them.
And that they the attitude in this is to seem to regard all women with HIV as predatory sexually?

Yes this happens that your partner has sex with another and gives you HIV; very sadly for me, it happened to me - but it is blame is what is evil not the woman or person we got HIV from! Not those our men/women/partners may have had sex with to get HIV. We all suffer equally and HIV is a VIRUS!

BUT woman with this hate attitude towards other women who have HIV rarely blame their man?
( not that I at all think blame is appropriate but ......I have been there.....a HIV diagnosis for many leads to angr as a first base..... so if your man is unfaithful and gives you HIV yes!!! you will be initially at least very angry as was I. This is our prerogative to hold anger and deal and process it as we need to -
But to blame, this is very different -(But this anger in some can lead to blame.)
_________________________________________

I also find harder to understand or accept that it leads to many women who are not in this position i.e they do not have HIV. Fearing it and instead of compassion and making sure they are safe themselves, they blame women in general who have HIV for all HIV!!

This is so very HARD for me to understand on on level - but on another I understand that they fear they are at risk

They seem to blame the women their men could potentially have sex with or do, even when it has not happened to them and may not ever - what is this about!!.

The attitude/opinion seems to be 'Men will be Men, can you blame them, its their instinct' - rubbish is what I say?
We are all responsible for our own sexual activity and to protect ourselves.
And at the total risk of being controversial ,in my 57 years of life, I do no think that women's sexual drives are that less urgent than mens??

But the attitude is generally .........
That the women whose 'men' may be 'tempted' by and have sex with - who just 'may' have HIV - are potentially evil and killers as they may have HIV, and definitely evil and killers if they do have HIV

This has already led to an increasing level of violence by men towards HIV women, especially in America but it is happening here too and in Africa, where it has always happened.

This is another reason why instead of leading a quiet life as a HIV+ older woman - as I so could as I personally am not under threat from this - I have joined Pozfem UK a leading positive woman's activist group http://www.poz-fem-uk.org/
And do my best to challenge such attitudes everywhere I find them - online or in person - and I see both!

The fear that seems to be driving the increase of this this worrying attitude towards is those with HIV+

Is the fear of getting HIV.

And that those with HIV will sleep around and will infect you ( or your partner/s and so you) and as HIV is seen as a potential killer - as it stall is if you can not get the meds but not if you can.

-that these nameless HIV+ people/often women, will potentially even 'murder' you, by infecting you or your partner?

And that worse.......... hetero people with HIV, especially women, WANT AND LIVE to infect their sexual partners with HIV and do it deliberately in most if not all cases - So we are seen as evil and deserving of any suffering we get and deserving of any public insult, our status being outed online - on twitter etc

( I am not talking about attitudes as they affect gay people here. I am not AT ALL minimizing what gay people are and have always gone though regarding HIV, and I am in solidarity with all gay men especially those with HIV. Gay men have always been regarded by some/many as a risk due to HIV and for many other reasons
But I am talking here specifically about attitudes that are now permeating the heterosexual community re HIV/AIDs even in Britain)

This attitude of blame is completely in disregard of the fact that it is everyone's responsibility to protect yourself from HIV with ALL partners, new or old. As you can not EVER be certain of their status unless you have gone to a regular and joint HIV test with them ( something being married to a seaman I wish now I had done regularly)

But that protecting yourself against the HIV virus is always a joint responsibility even if you both think? you are HIV neg

And in total disregard that most people, who know they have HIV, do not want to infect anyone else!

Yes some even if they know do not always tell their sexual partners straight away and for many very sound reasons that it is hard to fully appreciate unless you have HIV yourself- so this can happen for many reasons - that can not tell their partners they are HIV+-

But this does not mean you put anyone one else at risk ?? If you know it is so VERY easy to avoid risk to anyone else including sexual partners!

( there are many reasons why some do not feel able to disclose, especially straight away, especially women and one of them is this increasing abuse & violence worldwide towards HIV+ women)

Most people who know they have HIV take great care not to infect their sexual partners by insisting - if they can - on safer sex or condoms

BUT ....and very sadly if the truth is told many women who have HIV who are not lucky enough like me to have a long term partner just put their sexual, and consequentially their needs for intimacy, on hold.
Since I have had HIV I have met many women with HIV I have met many women among them with HIV who have not had sex or any kind of intimate relationship for many years with anyone, often since the day of their diagnosis.

It also disregards that the majority of those that pass HIV on are, like my husband , those that do not, as yet, i.e.at the time they passed it on!, know they have HIV!.

So everyone needs to protect themselves as if all they have sex with are HIV, or if they do not it is equally their responsibility if they get HIV, as it was mine.
All of us with HIV are innocent.

HIV - It is a virus not a crime!

I will fight this horrendous attitude towards HIV till my own death - which with drugs I hope will be way into my 70s - and criminalization of those with HIV.

Miracle Mineral Solution! - Denialists and Anti HIV Drug believers

2010-09-08T10:56:00.012+01:00

As well as out and out HIV Denialists there are also those who believe HIV exists and can lead to AIDS but believe that HIV medications do you more harm than good and that you can be 'cured' or treated by 'natural ' or 'alternative' preparations and/or treatments.

Some of these people actually have HIV themselves and I really fear for them if and when they get to the point in their HIV infection, like us, that if they do not take the drugs they will get ill and probably, sadly die of AIDs.

But others are those who don't have HIV but believe in 'natural' medication above what they call Pharmaceutical medication for all illnesses including HIV.

They are not suggesting natural and herbal or alternative medicines are to be used alongside Pharm meds as many do to relieve symptoms ( and if it works for you and does not interact badly with any medication you are on, why not?) but instead rather than alongside of any professionally prescribed Pharmicutical meds.
Here is where the danger lies!

If you argue this with them, that these remedies are highly unlikely to be effective for severe life threatening illnesses like HIV and cancer as medical knowledge is against them being - except in some cases alongside Pharm Drugs and to alleviate symptoms - and you try say that they may not, as yet, had any debilitating illness that can be treated with Pharm meds that are potentially life threatening or severely affect quality of life?

That if they did find themselves with HIV or cancer etc they may find they alter their views and take the Pharm meds, they usually say they would not. But many have never yet had to face this situation so how can they know?

I like to think that they would do the sensible thing and go to a 'real' doctor and take their advice rather than relying on unproven and dubious alternatives only, but I also fear that there are some that would go for 'alternative' medicines and die taking it. As after all there are many with Cancer, other conditions and also with HIV that do go down this line.

To use alternatives does seems a sensible thing to do if alongside Pharm meds. That is if it helps you or relieves symptoms and many reputable AIDS ORGs agree that alternative medications along side traditional treatment can help if you have HIV: http://www.lifepositive.com/body/body-holistic/aids/hiv-treatment.asp

Or if there is as yet no medical treatment for your condition as with ME etc or if your cancer etc is sadly untreatable, as taking something will perhaps relieve symptoms, at least make you feel you are proactive about your illness and give you hope.

But with something like HIV, that will potentially will kill you untreated, which has no cure but does have a relatively effective treatment, it makes no sense to me at all to take only 'alternatives' and not the HIV meds as well!! Unless perhaps you live in a country or situation where you can not get proper HIV meds, which is always tragic.

Many cite Lorenzo's Oil http://www.myelin.org/LorenzosOil/ as evidence that 'alternative' treatments can work. But there is some evidence this may have some effectiveness in some rare conditions although it is yet to be researched properly. So while I do not believe that it is outside the bounds of probability that some alternative medicines can help some conditions and at the very least relieve symptoms.
http://en.wikipedia.org/wiki/Lorenzo%27s_Oil
http://www.medicine.ox.ac.uk/bandolier/booth/neurol/lorenz.html

But this bares no relation to HIV:

But I was recently posted a link to one that for me takes the biscuit in its bizarreness and air of quackery!

At the very least its name reminds me of potions hawked by the quack doctors of the wild west and that anyone could take any preparation seriously as a cure for anything especially HIV/AIDS astounds me!

It is called MMS - Miracle Mineral Solution
The truth has to be in the name!
As if it cured anything at all it would truly be a bloody Miracle!

Even the name of the 'inventor' has to be suspect - Jim Humble!

http://projectavalon.net/lang/en/jim_humble_en.html
He is making a fast buck out of it too selling it online worldwide and his books on many different sites and outlets.

He is a well known fraudster with nothing to back up his claims and apparently his preparation is poisonous in itself. Yet people still buy the stuff!
http://mmsexposed.weebly.com/mms-protocol-is-it-fact-or-fiction.html

The person who sent me this link actually did mean well. As a believer in 'natural' medicine he really believed that the HIV ARVs must be killing me and I would be so much better off taking a natural medicine like this with such a good testimony! He truly meant well but it appalls me that such is the ignorance about HIV/AIDs even in the UK that anyone as educated as him and from the UK, could possibly believe that this would be an viable alternative for me or anyone else with HIV?

But what I really object to is is this 'Jim Humble' is also selling it in Africa, where he in fact lives - (and other countries ) which with the numbers in Africa and elsewhere who may have money enough to pay for alternatives but cant get the HIV meds this is a VERY BIG market.

And even if he gives it away to some - which he does apparently in a clinic. This is only to give himself a degree of credibility to support him otherwise selling it - with all these so called HIV 'cures' there is always a money making angle http://www.miraclemineral.org/

This is not any different from the Pharm companies anti Pharm med people are so against right now, making a profit from their products in my view

At least the Pharm companies have many checks and balances and are monitored
Not saying the Pharm companies are great either, they are also making big bucks out of others misery and illness.But mavericks like this man 'Jim' and so many others can claim, do and say what they like with no one checking them or monitoring what they offer

But what is the harm in promoting these so called cures and treatments for HIV?
Well I, and others, say the potential harm is huge, in my view criminal.

"Many peddlers of bogus cures insist their clients avoid all other treatments, including antiretroviral medicines. By the time a patient realizes the “cure” hasn’t worked, their prospects for successful antiretroviral treatment may well have diminished.
Fake cures may also cause direct harm to health. Inventors often refuse to reveal their recipes. Some so-called cures have been found to contain industrial solvents, disinfectants and other poisons. The dangers posed by the virgin cleansing myth – which advocates sex with children as a cure for AIDS – are only too clear.
Finally, the promotion of fake AIDS cures undermines HIV prevention. People who believe in a cure are less likely to fear becoming infected with HIV, and hence less likely to take precautions."

http://www.avert.org/cure-for-aids.htm

There sadly are many other so called 'cures' and treatments for HIV/AIDs. Not least beetroot juice as advocated in South Africa by their government before South Africa thankfully got wize last year about the realities of HIV /AIDs and started to offer free effective meds to those with HIV in SA: http://www.buzzle.com/articles/south-africas-aids-treatment-plan-boosted.html

The number of so called HIV/AIDs cures are so numerous to mention here but here are some more links if you are interested.

http://www.truehealth.org/break16.html
http://www.youtube.com/watch?v=weVy0m7OYk0
http://www.naturalcuresforhiv.com/
http://www.natural-remedies-hiv-aids.com/
http://www.articlesbase.com/alternative-medicine-articles/herbal-and-natural-aids-cure-hiv-61434.html
http://www.cancertutor.com/AIDS/AIDS.html

If you have HIV/AIDS please do not try them.
What is sad to me is the number of people that do!

Personally if one day I can not get HIV Pharm meds or they fail for me due to resistance etc the treatment I shall use is GIN! Mothers ruin!

Gin is as good or better than most of the others. At least that way I may leave this life totally sozzled and hopefully not aware of anything much!

HIV/AIDS Denialists

2010-09-05T10:24:00.003+01:00

Yes these very strange/odd - to me at least! - people do exist! And I have come across them recently in person and online.

It has been quite a journey to meet and talk with them and to learn what they believe. At times a very upsetting journey!

I have also found that many, with and without HIV, do not know that these people exist or how prevalent they are - or in many ways how influential! And this in my opinion is so VERY dangerous!

Denialists are those that either deny HIV and AIDS exists at all, and that it is not a virus.

Some believe that if it does exist it is entirely caused by your lifestyle i.e what you eat, being overweight, pollution, using drugs, both recreational or that you take medications for illnesses and not just use 'natural ' medications or your sexual practices - anal sex is often cited for a reason for HIV/AIDs.

As a side issue - I know this is not relevant but this is my blog so I will say what I like - I have no objection AT ALL to anyone having any sort of sex they like, including anal sex, men or women. If someone enjoys it I have no objection to anyone doing whatever they want sexually as long as they are safe and it is by mutual consent. And many do like it anal sex and other sex i.e domination, dressing up, whatever??- I am happy for anyone to do whatever they like.
( yet if they ever read this AIDs denialists will cite this as a reason why I have HIV won't they ?! As I am somehow immoral and so deserve to have HIV as even though I have always have had pretty ordinary sex. But to some denialists it is enough that I think its OK for those who like it! So that explains why I now have HIV!
Often when I talk to HIV?AIDs denialists my attitudes and opinions are enough of a reason in itself as to why I now have HIV/AIDS??
But I personally want it known I have never had anal sex as tried it once or twice and got no where with it EVER, not even to first base, so did not happen.

Why did I put this very personal detail in? Too much information?? Well I did because I have been accused/told too many times recently by HIV?AIDS denialists that the reason I and my husband have HIV, and that he has had AIDs is because I/we must have preformed certain sexual practices - I assure you that apart from us being open and trying a few things between ourselves - but not always succeeding - our sexual life is and always has been very straight forward hetero pretty ordinary sex

But if you tell them ( HIV/AIDs Denialists that you have none of these factors in your life - including bad diet, pollution, certain lifestyle choices, drug taking, anal or any other kind of sex they seem to disapprove of ......in their view! .......... they just go on to find other reasons why you may now be ill and a cause to why you now have HIV!!

To many HIV/AIDs denilaists even if they think HIV exists it is never just HIV as a virus that leads to AIDs. A virus that is what you were unfortunate to catch/acquire and that you now have ! Whatever you say they always have another explanation .

So crazy really!

Still other denialists do believe the HIV virus exists but at most is exists as a harmless 'carrier' virus. That if you get AIDs if your HIV is untreated then it is due to other factor ( see above)

Many also refuse to believe that even if HIV exists, that it is a sexually transmitted illness/virus

Still others believe in the HIV virus but that it is the toxic HIV medications that cause people to develop AIDs not your HIV!!

This really does make me sooo MAD!

Oh fucking tell Freddy Mercury this or tell the thousands of others who have died world wide before effective HIV/AIDS medications existed? And those who are still dying nowbecause they can not get the meds that keep us alive and well.

Also tell many otherswo survived thanks to the meds, including friends I have met who have had HIV for many years and famous ones such as Magic Johnston: http://en.wikipedia.org/wiki/Magic_Johnson who has survived HIV for many years due to the HIV drugs .

Or DAB Dab Garner: http://www.dabtheaidsbearproject.com/ one of the first Americans to be diagnosed HIV positive and as he managed to survive until HIV meds were availale - unlike many he is still here thanks to surviving long enough to get effective HIV meds and to tell his tale and is still working hard to prevent others getting HIV- there are so many anectotal stories.

But I accept these are not evidence, I leave evidence to the scientists and so should HIV /AIDs denilaists. They present themselves as if they know and that they are scientifically & medically able - but they are no more that than I am?
At least I KNOW I am not medically trained or a scientist, these people seem to think they are.

But in my opinion , the fact is HIV AIDs denialists are so wrong and there is much scientific evidence to support this too - but this is my blog and I am not a scientist, I just have HIV.

Some HIV/AIDs denialists even believe that those like me who take HIV ARVs - Antiretrovirals - are addicts - that the ARVs are addictive and simular to taking Heroin!

That if those taking them stopped taking the ARVs they may get worse for a while but that this is drug withdrawal and eventually, once they are no longer addicted, they will be again well without the use of ARV meds!

This is VERY dangerous as people with HIV who have reached the point of needing meds - like me and Barry - will die if they do not take them. and sadly the past is littered with HIV denialists that in fact died of AIDs but did not believe they had HIV/AIDs even on their death bed!! see...........

http://en.wikipedia.org/wiki/AIDS_denialism and
http://www.aidstruth.org/denialism/dead_denialist

Denialists are rarely taken seriously by doctors medical people in the west, US, UK, Europe etc.

BUT sadly they are at times taken seriously by qualified doctors in places - for instance Uganda right now - where to believe in the existence of HIV and AIDs is currently against government policy and to do so is going against the government that probably employs them. So will not further their career, or worse may put them in danger to believe in HIV as a virus leading to AIDs that the only treatment is ARVs- yes this happens even to medical professionals in some countries even now - South Africa has completey changed now btu only a few years ago this was the position there too!!

But also denialists are often believed by ordinary people many of whom have been diagnosed HIV positive.

There are many reasons for that, and for those it starts as denial - which is for many - including my husband briefly- but not ever for me - is a first response to an HIV diagnosis.

Therefore denialist claims can be so really attractive when you have been diagnosed with HIV yourself and are in denial and shit scared and also have no idea how or if or how you can tell your family etc.

But denialists claims are also often also believed by those who have also had time to think about their diagnosis as they are very desperate and looking for any other answer rather than face the realities of being HIV positive i.e facing a lifetimes of medication and often stigma and discrimination.

( or if you can not get that medication as many still can not, very possibly AIDs and an early death and the stigma on top!)

And so who can blame them for wanting an alternative? I don't! As I have found to my cost that to embrace that you have HIV, not ever deny and to be open is a VERY hard path indeed!

I have found sadly that hetero women with HIV I have met in person and online can be likely to believe or half believe denialists claims and those that are Christian women or very devote in whatever religion they follow are more likely to believe denialists claims - especially the claims that say/believe it is not a sexually transmitted, illness.
It is so easy sadly to see why they want/indeed need to believe this!

Others that readily believe denialists claims I have found to be those who can not afford effective HIV medication.
Usually/often because of the health system in the countries they live is one where they have to pay for their medical consultations, treatment and drugs directly or to pay for it need have medical insurance that they have to pay for. And of course can not pay direclty for treatment and not all have insurance - and one thing I have learned is that a HIV diagnoses can restrict your ability to work and earn an income even if you are not as yet unwell!!!

- and this, surprisingly to me, includes America as well as countries in Africa and many other countries where HIV meds have to be paid for even if you are actually dying for AIDs. And if you do not have the money to pay for them, you can not get them!

This for me from my privilaged situation in the United Kingdom, where my HIV meds are totally free to me the sadist situation I feel.

I can so see why those in this situation want to believe the denialists claims? What real option do you have to stay as positive about your life as you can using any means that you can when you do not have access to the only medication that will save your life?

Especially if the denialists are offering 'alternative' 'cures' or 'treatment' that some may be able to afford. And many denialists combine their obsession of converting people to their cause with selling 'alternative' or 'natural ' 'treatments'.

To be fair not all denialists are selling their 'alternatives' or are trying to get people to use them or follow their regimes for financial gain.

I have met many Denialists that really believe they have the best interests of those with HIV at heart. Many that 'encourage' those diagnosed with HIV to use various natural or herbal medicines.
And in fact many set up projects that often give their natural remedies out for free to those with HIV/AIDs and truly believe they work!
Also those who propound lifestyle changes, like living in an 'unpolluted' situation, not eating meat, even being vegan etc, etc .I could go on - they seem to mean well, but are so VERY dangerous!!

Rather than repeat all I have written in other arenas on the internet and all the links posted for further informaton.
I intend to post dialogues with others I have had elsewhere about and with HIV/AIDs denialists - I just have to check with those I have spoken too about this in other arenas, that they do not mind me quoting them?

Positive Thinking – or you can’t always get what you want!

2010-09-05T09:30:00.001+01:00

I was told recently while on a course you can achieve anything if you really want to. Then I was told this again by someone I know on Facebook! In fact I often get told this when I dare tell anyone that I am struggling with something!

The implication it seemed to me on the first instance that because felt very upset that I was not able to grasp what in fact I was desperately trying to learn was somehow due to my own lack of effort, not wanting it enough or not trying hard enough; the other because I dared write about my situation, my disappointments and how hard it is sometimes and not agree that positive thinking was always the way forward, that I believe that you need to see things as they really are and go through a process and sometimes that process is grief before you accept what you can have and not strive frustratingly for that you can not.

And I in fact know that's crap.

If the person/people who said that has up to this point got everything they have wanted – and they often say they have through thinking positively - then lucky them! Yes they may or may not have worked hard for what they have, but I have too and I do not always succeed or get what I want. They have probably put a lot of effort into what the do or have done and deserve to succeed in what they do.

But it is just simply NOT true that you can achieve/get everything you want simply because you want it enough or even because you work at it hard enough and try hard enough.

Yes it helps. You have to work for what you want or need and it helps to really want it, but it just does not always work that way and if the person who said this has not learned this yet it is going to be a hard lesson when they do. And every one learns it one day.

One reason you can not always get what you want or achieve what you want is it is not always up to you, others wants, needs and actions can get in the way of what you want. And rightly too! None of us is an island.

I guess the more single minded you are and the less you care about others needs, intentions and concerns the more you may get what you think you want, but in the end everyone finds that unless they railroad over all barriers including other people there will be a time when they won't get what they want however much they want it.

So it's rubbish, but being told that by someone still hurts - even though I know it is crap it was still a direct and deliberate dig at me because I was really finding the course we were on together at the time hard.

Don't some people love sticking the knife in and doing it with a smile as if they are trying to be helpful- when both you and they know it's a knife!

I am always tempted to say how it’s like to have to be positive because I am Positive, HIV positive? And how well you have to know yourself and how positively you have to live your life if you are going to manage to survive being HIV positive, mentally and emotionally

But I know I am right anyway - you can't always get what you want, in the words of the Rolling Stones

For example for many years I wanted Barry to leave the sea & start a business with me years ago but he would not. And due to the nature of the business unless he came home form sea and helped with it I could not start that business as long as I was with him. I could have left him I guess and set up with someone else, but the other thing I truly want, is to be with him.

So I had a decision to make, what did I most care about, success in business or being with my husband. Ironically I did get this thing I wanted and through having HIV as Through having HIV Barry lost his job at sea and then together we started this business. >

But like everything I have found to get what you want you also often have to lose something. In this case I only got the business because we both lost our health!

Other examples in my life are:

I hugely wanted to have a natural birth and did everything I could to ensure I would, but my body and my baby had other ideas, so I had the opposite an emergency Cesarean- don't tell me that was because I did not want a natural birth enough or try enough? And believe me in those days I was a very positive person. If I had insisted on a natural birth, I would have lost my baby!

I always wanted a university degree that I don’t have one or why I can not be bothered to go fully into it here but it was not because I did not want it enough or work hard enough. Briefly I was the wrong sex and background in an age that girls like me who went to secondary school were expected to either marry young or go to work at 15, I did not marry young so I went to work at 15.The boys in my family were treated differently - they both got university degrees and both have/have PHDs That is how it was for women - and not to long ago!

I did make up for it later when I trained and qualified as a teacher, but I did not have the educational background to get on a degree course so I came away with a Cert Ed with Distinction. I still have hopes of that degree but so far it alludes me mostly because I would have to pay and no longer have the money.

I could go on but I am too angry. #**/+%

It always makes me angry when people tell me you can have anything you want if you try hard enough, really want it and think positively. It makes me more angry when they try to tell me that I do not always get what I want because I am not positive enough or don’t want it enough or do not work or try hard enough – I am and do all those things!

Getting what you want is simply not always in your control, well not if you want to consider other people and their needs. And if you think it is then you are wrong and it will be a nasty shock when you find this out.

- Posted using BlogPress from my iPhone

HIV and the over 50s in the UK

2010-07-21T10:39:00.003+01:00

The Vienna AIDS Conference, currently happening now - which I so wish I could have attended but could not - has led to more awareness of HIV in the older generation and in the UK. I do not have time right now to re-write it for this blog so I have just reproduced my comments I sent to national UK media on this

__________________________________________________________________

Both my husband and I, now 58 and 57 are one of theses statistics as we now live with HIV, we have known for approximately 2.5 to 3 years.

Since my diagnosis I have tired my best as just one individual to raise awareness of the rising rate of HIV in older people and the risks of HIV for those over 50 specifically.

And to draw attention to the fact that HIV has not gone away and new diagnosies are happening every day and amonst all, gay or straight, women and men and in all countries in the world, including the UK.!

To that aim I have since my diagnosis been in a national newspaper - the People, and a few magazines and on local radio and on Embarrassing Bodies ( channel 4) .

I am sure most who saw me on any of those thought that I was somehow an attention seeker who just wanted to be on the media?

Nothing could be further from the truth.

We have lived for 25 years a VERY quiet life in a smallholding in Cornwall, and that is how we want to live. If it was not for HIV we would never have been known to anyone.

But when I was diagnosed HIV I found it was like joining a secret club. That so many in the UK, and even in Cornwall young and over 40+ have HIV, and the media seems to have let HIV drop through their radar and of no interest, as if it is only something that is happening in Africa etc!!

Anyway, as to our story.

We did not think we were at risk? And I certainly did not!

Why would I? As I have been married to my husband for 20+ years and faithful to one man, my husband, for over 30 years.

But sadly my husband made a brief - very brief - 'mistake' with a woman when he was approx 50 years old about 8 years ago, acquired HIV and unknown to me, gave it to me.

He sadly had progressed to AIDs before he was diagnosed ( and I already had symptoms and was also near/verging on AIDs) as he never thought one incident in over 25 years of marriage and 30 years of being with me, one person, would lead to HIV.

So he never told me he was unfaithful - out of shame and guilt, and the hope that he could forget his one transgression, not because his aim was he wanted to deceive me, but out of shame hat he had ever done this.

So while it is no excuse that I also did not protect myself as I should have been more aware - as should we all!!

As I had reached the menopause I had long stopped using contraception and while I was/and am very aware of STIs having worked as a Youth worker with one of my roles sexual and sexual health awareness with young people, I simply did not think I needed to use protection with my husband.

Therefore I, like many women of all ages, I did not have the information to know to protect myself so now at 57 I find I am also HIV positive.

HIV may now be controllable with medication, medication which we are both on, but this does not make it any easier at all.

The medication does have side effects. For me life changing side effects for my husband less but still interferes with his quality of life.

And as infection starting when you are over 50 is a comparatively new thing no one really knows what the prognosis is in the long term for the over 50s. When you are over 50 your immune system is not as good as it is when you are younger, also the Antiretrovaral medications are highly toxic and known to damage liver, heart and kidneys and if you have lived till your 50s theses organs have taken a battering even if you are not a drinker etc - and we are not - and ARVs only delay at best the onset of AIDs and al on ARVs or with HIV are 70% more prone to many cancers than the general population so for us it is a life sentence and a waiting game. We want to survive until our young 21 year old daughter is at least 30, to see her set up, that is our only ambition now.

And HIV is STILL a highly stigmatized illness - I can not share what I am going thorough with other women my age in the same way I may have if I had another illness breast or cervical cancer for instance and this isolates me and makes me feel so very alone.

And for no one is living with HIV something anyone would ever want.

Nor is living and coping with a stigmatized illness such as HIV how we would wish to lead the short years of active life we all have left when in our 50s.

My message to the over 50s or even the over 45s is:

Don't join us?

Be careful, use protection whoever your sexual partner is. And if you have reason to feel you have ever taken a risk at all.........................

Get TESTED!

If you are 45, 50, or even 80, get tested

As HIV can be treated and controlled and you do not want to get to the stage of AIDs like my husband and I before you get that treatment.

My views on the Election & LibDem/Con Alliance

2010-05-12T09:44:00.002+01:00

So what has the outcome of the election, hung parliament and subsequent LibDem/Conservative coalition got to do with living with HIV.

Everything is the answer

Because with HIV government policies I believe will directly affect my life,and the lives of many other vulnerable, poor disabled , ill people especially in the area of Health care and social and other services, social care, benefits, Disability Living Allowance in particular and in so many other areas

I might as well post what I have written elsewhere as an explanation of my views:

I lived through the Thatcher years and the Labour government before that and through the hung parliament in between, as I am now 57

As a young person who left school at 15- in 1968 from then through most of my 20s I did unskilled labour until I went to 'night school ' and studied and eventually qualified as a teacher/youth worker I experienced low paid, often manual work in very poor conditions in the 1970s

I then worked in the public sector as a professional youth and community worker worker from 1977 to 1986 in inner city London, both for the Local Authority and then for a grant supported charity. Then in Cornwall from 1986 for Cornwall County Youth service, working with children from low income families and Cornwall as a very poor and rural Community was left reeling from the Thatcher years, even if you had a job etc living in Cornwall you suffered from poor services etc - we still do.

And so in London and Cornwall I saw first hand the devastation to lives that Thatcher policies caused to those of low incomes and to communities.

Yet at the same time there were those making a financial 'killing' out of it - hence the term Yuppies etc .

So if you were among the privileged who befitted financially under Maggie Thatchers rule you probably never saw - and perhaps did not care?

............. what it was doing to those who were living on the knife edge of poverty or below to whom just a few pounds a week and loss of services made a huge difference to the vulnerable.

In my 20s I also lived through the civil unrest and strikes in London that preceded MT government, that led to piles of rubbish higher than our houses infested with rats, the 3 day week, power cuts, the dead not being buried etc - which to be fair started in a Labour reign but was made worse by a hung parliament as far as I recall.

Which led to the dawn of new Labour.

I was actually lucky - or not lucky as I worked very hard - to always have a job and while not a high earner I was always waged during all theses times and so while I saw what dire situations people were in as I worked throughout - even managed to keep my job during the 3 day week as a young person in my 20s - so I was also I guess privileged,

But I was never blind!

So if I look into the past governments I have directly experienced, New Labour did better in terms of the welfare of ordinary people and the disadvantaged than any. There is always room for improvement and I did not like what happened re the Iraq war and other things - but then the Cons would almost certainly have taken us into that war anyway -

But I dread a return of a Conservative gov far more than a Labour - I was hopping against all logic and hope for Lib Dems and am disappointed as I felt that LD combined with Lab might be a winning team to get it right

i.e get the balance that has up to this point been missing in our polarized party politics type governments.

Now all I can hope for is the presence of LibDems moderates what I know a Conservative government is capable of doing to the welfare of the vulnerable, disabled and poor

A group that I due to life events I now sadly now belong

So now I am not only going to see what happens first hand as a Youth and Community Worker.

Now as a disabled person with a horrible virus called HIV which affects my ability to work, I will experience what this government brings directly, and I find it very scary.

My torn ligaments - very depressing

2010-04-22T11:57:00.003+01:00

On the 29/3/10 I fell and tore the ligaments in my right ankle - not a problem you may think ?/ No BIG Deal!!
But try having an ankle fusion on the other ankle, Living with HIV and working for yourself where whether you are disabled or not - you have no choice - you have to work even if you have to crawl to do it!!

Thanks all - I am not completely stuck in the house but as I live up an unmade track which I cant walk down - and it only gets me to a village that has nothing not even a shop anyway!! and with an ankle fusion on my left ankle which means I have to drive an automatic car and now ligaments on my right I am pretty much dependent on my husband right now to drive me everywhere, and I hate being dependent like this.

But what is depressing me so much is from being a very fit person who rode at least 3 times a week,worked & led an active life, walked my dogs and cycled that it then took me about 2 years to be able to walk reasonably at all after the accident then the fusion means I will always need a stick at times then while recovering from the fusion the HIV diagnosis came which knocked me for six - just such a shock as I am sure you know.

But then I was in the last 8 months really being proactive and fighting back and doing really well. My ankle fusion pain had settled down and I was going to aqua aerobics, Gym, Zumba and a choir & had lost a bit of weight that I really needed to do as it helps my ankles and knees to be lighter....

But then on the 29/3 I fell and tore my ligament in the other leg ankle and have not been able to do any of my activities except the choir - and then my husband has to take me, I have put on a stone and missed the last PozFem meeting in London: http://www.poz-fem-uk.org/

Because I felt could not go on the train & carry my bags on my own, not could I do the walking involved for the itinerary.

The feeling of real depression today is I am realizing that my ligament is no better - in fact over the last few days more painful for some reason - and it will take months to get right again & I can do nothing much to make it right as ligaments just take time - but I fear it has undone all the progress I had made.

I'll get over it yes and troupe on, but today I am really fed up - not I feel clinically depressed but really fed up!!!

I may sound very needy right now & so apologize that I do - but I really did spend many years supporting others and not asking anyone for support....

My my mum was right when she used to say
what goes around comes around?

As on one hand I feel bad that I seem to post my needs for support online far too often when in the past I never would have at all .

but at the same time I have supported many, many people online over the years, in fact since 1998 . Some may not know this to be so - but it is so.

But I need support myself now and maybe with HIV - ------

I feel that unless I can get a complete handle on it that works 100% and allows me to live in complete harmony with the fact I have HIV? I so hope so - but I have to accept I may always now be needy online.

BUT

I really do appreciate all of you that have over the last year or so responded to my posts online and here .

Especially as I know each and every one of you have your own stuff to bear - physical or emotional/mental - and that you are all very brave people.

I may sound very needy right now & so apologize that I do - but I really did spend many years supporting others and not asking anyone for support....

My my mum was right when she used to say
what goes around comes around?

As on one hand I feel bad that I seem to post my needs for support online far too often when in the past I never would have at all .

but at the same time I have supported many, many people online over the years, in fact since 1998 . Some may not know this to be so - but it is so.

But I need support myself now and maybe with HIV - ------

Unless I can get a complete handle on it that works 100% and allows me to live in complete harmony with the fact I have HIV? I so hope so - but I have to accept I may always now be needy online

Love you all

GET A LIFE - Twitter ignorance & HIV Jokes!!!

2010-04-15T13:34:00.006+01:00

Last night I stupidly tried to tackle HIV ignorance on Twitter.

I did not mean to as I had other reasons to go on Twitter
As I often look online at what was being said about HIV as I have become - without actualy planning too - an online HIV activist
to find the latest research and knowledge being talked about HIV
so I did this last night, so I was up to date, before going to the HIV meeting I planned to go to today.

So after looking on Google etc I typed in 'HIV' on Twitter and did a search for anything relating to HIV.

I did find some good links and good up to date information to knowledge and research but amongst this was appalled at the ignorance and jokes also being said on twitter about HIV and people with HIV.
Sadly I live a sheltered life in the country and truly did not really believe such ignorance still existed & that such horrible jokes could be made at the expense of those with HIV

Most of it was shocking but just too 'out there' to even bother with. But a couple of very silly jokes I could not help twittering back about.

I do not usually do this but I was pretty appalled by what I read and by young and intelligence people
Yes I should not have as you should not join in as if people have theses views are you ever going to change them?

So one young woman got back to me and as she said she was a trainee nurse and as I admired her for getting back to me I thought it was worth trying to tell her the facts and how damaging her joke had been ....and how wrong her assumptions were factually about HIV transmission

I so wish I had not bothered as I have ended up very hurt.
I really thought she was just misinformed so I tried but whatever she said she seemed to take the wrong way as if I was he enemy?? That nothing I said as someone with HIV could be believed - like all people with HIV want to pass HIV on and are somehow to blame for their having HIV??

I should have given up, but I could see her profile online on myspace & Twitter & that she had two young children and while she said on twitter she was a trainee nurse I was not sure but she did have a business like me as a designer

and I felt if she had bothered to get back - maybe, just maybe , she did want to know?

But in the end I was accused by her of being ' like you're bored with shit to do'
In other words
GET A LIFE!

I have been told far worse but this young woman really got to me, sadly she made me cry, where others have not.

I just so just wanted to explain where it really is and to educate.

As if she is really to be a nurse, ignorance like this will actually hurt her in the end - she may not know that yet but it will.

If she is not a trainee nurse she has children and what is she bringing them up to believe about HIV. Does she not realize that HIV will be any current child's problem in the future and they need to know the realities of it - not to learn to dismiss HIV with a joke??

And she is right in a way as HIV IS my life - it is all of my life. I defy anyone with HIV not to find having HIV penetrates every single inch of your life. Does she and others not realize how sad I am that my life in my 50s has now become HIV????

But I still have a business to run a family and I have so much to do, does this person think I also WANT to be doing what I do re HIV? or care - no! of course not. If I did not have HIV my life would be very different

But I care when people put out stuff that perpetuates stigma and discrimination - and I care more if they really and truly believe what they are saying and are not open to investigate to find out the reality.

Do they have any idea what it is like to live with HIV ? Of course not!!
And on top of that how it is to be made a joke of. Nor do they seem to want to know the facts

This person who said she was a trainee nurse, yet she made a joke about HIV that suggested that to drink out of the same drink as someone with HIV was a risk and would not believe that saliva was NOT a risk ? I thought everyone knew that saliva is not ?

If a trainee nurse perpetuates such fear and misinformation - what does the rest of the population of the world truly believe about HIV ?
When people talk to me that I know are they lying to me about what they really believe to protect me and my feelings?

- but secretly underneath see all of us with HIV as a threat??

Also can you imagine what it would be like as someone with HIV to be nursed by a nurse that is so ignorant that thinks HIV can be passed on so easily and treats every patient she has with HIV as a dangerous threat to herself??
Not saying she or any nurse or medical professional shudl not protect themselves - I want them to protect themselves
But there is a big difference form protecting yourself and getting your facts so wrong you think you are at risk from saliva or any ordinary human contact with someone with HIV

My HIV nurse who takes my bloods every three months who is in her 50s herself and been doing HIV nursing for over 20 years does not even bother to wear gloves when she takes our blood!

She knows she is of NO risk - so why are not student nurses told the facts?

Yes they have to protect themselves. As someone with HIV the last thing in the world I would ever want would be a nurse - or anyone - to get HIV from me BUT I would never put them at risk because I know the facts.

But I also do not want to be treated like a pariah by medical staff if I have to go to hospital!!

To be presented as dangerous even to drink out of a can or cup with someone - this is what this person said on twitter that I felt I had to challenge.

Of course that was not ALL the point as even though I know no one is of any risk if they shared a can of drink with me or anyone with HIV, the joke was that someone with HIV might offer a can of drink to someone and have a laugh as they shared it.

Yet this would not be at all funny to me or anyone sane with HIV
Nor would anyone with HIV share cans with anyone else usually, not only so as not to embarrass the other person but also because with a lowered immune system
We with HIV are of more danger from sharing cups, cans or anything than anyone without HIV is sharing with US!!!
I so wish now I had not bothered - what was the use - people are never going to believe someone who has HIV.

What HURTS me most is that some seem to think we WANT to infect others and are a walking infection reserve with no morals or care for others????

And that I tell lies - that I would tell anyone that saliva was not a risk if it was????? or would ell anyone any fact about HIV that was not totally so??

OK then
Back to my life

And YES I do have a life

Pozfem meeting in London - did not make it

2010-04-15T12:44:00.001+01:00

This is the first time I did not make a PozFem meeting: http://www.poz-fem-uk.org/

I am now very sad!

I hate traveling and go through a whole gamete of fear every time I wish to go to a meeting more than 3 hours travel away from where I live in Cornwall UK

And living in Cornwall everything is more than 3 hours travel for me - but I usually make it.

But this time it seemed stacked against me as 2 weeks ago fell & tore my ligament in my good leg. I stil can not walk due to my other leg being damaged by an accident - But I still was going to try to make it .

Then this morning I woke up at 3pm with vomiting and the shits. No don't tell me it was nerves because it was not. Even though it is far too late to get the train I still have this and can not go much further than next to my toilet - Yes its a bug but also before I had HIV I did not get bugs I was very healthy.

I am so sorry I cant be there this weekend - feel so useless right now

Love to all at Pozfem

You live and learn - honesty

2010-04-12T13:17:00.015+01:00

I might not have posted my previous post if I had not so graphically been re- educated on the desire for some men not to be honest with their women. But ?
Are we also honest with our men?

Yes I was - totally - and beginning to feel that I may have been the mug?
As I was always honest with Barry but perhaps not as much with previous partners that I did not trust nor had made any commitment to

BUT that was many years ago.

When I met Barry I trusted Barry totally, and I have known him over 30+ years but we did not commit to each other until I was 32 - I am now 57.

But was I a mug? Yes I was even after over 20+ years in a relationship and a marriage in our case, I realize years later you can never trust ( really can you ever?)

You can love but trust is something else - after all he did betray my trust - by being unfaithful and then not telling me he was - the icing on the cake is that he got HIV from that 'encounter' and gave it to me.

But even I never realized until recently how much anyone in any longer term relationship would/could be dishonest to their partner.

As I said - you live and learn - I hope others learn before it is too late as it is for me.

I never really took in how much Barry was in fact dishonest to me until recently. Despite that he was unfaithful never told me and did not tell me he had been unfaithful until he had AIDS and PCP! And then not until I questioned him !!

I still trusted him - still do in a way!

I knew very well it could happen in a non committed relationship - but I felt I was immune in my very long term relationship with my partner - how wrong can someone be ??

MY MESSAGE TO YOU - NEVER GET COMPLACENT!
No one is immune from dishonesty in any relationship - HOWEVER MUCH YOU LOVE THEM AND HOWEVER MUCH YOU WILL NEVER LEAVE THEM - DO NOT GET COMPLACENT!!
Go into everything with your eyes open!

It does not mean you should leave them - that is totally up to you - but my message is ....
be aware!!

Over the last 4 days this has been highlighted as I have been told or involved in the following situations

The First Story

One woman I have known for over 20 years - she is a twice a grandmother.
But a very young & very attractive grandmother being only mid 40s slim, attractive and being single for some time wanted to have a new relationship -

So she did in that she met someone through her work.

But shockingly found after some time she was being lied to by her new partner about even his real name ? nor his true address and his status, or as to whether he is with someone else or not .

She only found out what his true name address and other details was the other night when he had a very serious asthma attack and she saved his life - literally she did - by getting him to hospital in time - then in A & E with her there he had to come clean and admit his real name address etc for his medical records!!!

He is not young - 52 - nor is she is young or inexperienced i.e 43 and a grandmother twice already-

So why do men - and women - feel they have to lie ?? If they lie like this how can we ever be sure they are not lying about their sexual heath?

The second story.

Another friend of mine who is also in her 40s but going out with someone in their late 20s noticed a blister on his penis.
She is not at all unaware or at all ignorant or uninformed so of course when she noticed it she asked him and he said .....................

I caught it in my zip!

That time she believed him - why? because we believe those we have intimate relationships with who look in our eyes and tell us something is so......men or women we WANT to believe don't we?

But he got the same blisters again a few months later - he also said again - I caught it in my zip!

This time she knew it was total crap - it was herpes of course!
She knows it is but he has still not admitted it - nor agreed yet to go to the GU clinic
And to be honest she has not either through fear I guess of any disclosure consequences.

THIS TO ME DEMONSTRATES - We do not have control of our sexual health as women - or as men perhaps ?
Will we ever?

Well not until we are honest with each other!

How HIV infects Women

2010-04-12T11:43:00.004+01:00

It was previously thought that HIV only infected women through vaginal sex if they had a tear or sore in their vagina.

It was often suggested that this tear or sore could be from 'rough sex' or from the woman having another sexually transmitted illness or being a drug user or unwell in general.

Sadly this made women who got the virus through unprotected vaginal sex feel somehow even more responsible for the fact they acquired HIV than they might be.

But it takes two you know !! Always has always will!!!

Yet the latest research could explain why all women acquire the virus more easily than men and now more often.

YES I KNOW WE SHOULD ALL USE SAFER SEX AND A CONDOM

But the reality is that even in the so called developed world ( I live in the UK) women DO NOT have complete control over their sexual lives and the use of condoms etc.

This was even true for me .

As a married women living in the UK I thought I had consensual if not complete control over our lives and at least our sexual lives!

but did I really!

My husband was a seaman, he came home to me and wanted sex after being months away, of course I wanted sex too, as it was not only him that had been on their own for the months he was away.

But I prided myself in being a 'liberated/intelligent/educated/knowledgeable woman
And so I asked
Every single time he came home to me I asked - honestly I asked every time to which he will now confirm that I asked:
'Have you had sex with anyone else while away'

EVERY TIME - He looked me in the eyes and said NO!!! - every single time he came home in over 25+ years!

And I believed him, if he said he had not - then he had not!!
And so even as aware as I was I did not think there was any reason to use a condom.

As even before I reached the menopause I was open to have more children although it never happened and after the menopause I did not think their was any reason to use protection either .

But believe me had he ever said he had has sex with anyone else - I would NOT (within reason) have left him, but I would have had the knowledge to protect myself and I would have.

So why you may ask did I not use safe sex anyway?
Well I did not- he was the father of my only child, we had at that point been together over 20 years, he said - looking into my eyes - he had taken no risk - ever - so I believed him!

I blame my conditioning as a woman and the lack of power all women have in all relationships & especially sexual relationships between men and women

plus how HIV transmission is now being criminalized does not help us:
See Alice Welbourn on this: http://www.sophiaforum.net/resources/WelbournIWDMarch09.pdf

Anyway it has now been found that this is not the case

It is NOT so that is we get HIV it is somehow not only our fault if we get HIV because we did not insist on a condom but also because we were somehow already 'infected, sullied, vulnerable! - because our vagina has a tear or we already had a STI!
OUR FAULT OF COURSE!

NO - THIS IS SO CRAP

When are ALL heterosexual men going to learn they have responsibilities for theirs and their partners sexual health too??? If we do NOT have the right information how can we make the right choices?

Any woman can get infected by ordinary sexual intercourse because normal cells in the vagina, the epithelial cells, allow the HIV virus to get through.

http://www.usnews.com/health/family-health/womens-health/articles/2010/04/08/more-clues-emerge-on-how-hiv-infects-women.html

Back to the drawing Board!

2010-02-18T14:54:00.002Z

Now I have used my blog to get it off my mind the events of the last few days and how difficult I found the course, I am determined to at least try to complete the work and do the assignments.

To do that I am going to go back to the start.

I intend to work through each exercise of the course using the online course materials and try to grasp what I did not first time around.
Then I intend to try the assignments

Wish me luck!!

What is PHP? - The Course

2010-02-18T13:56:00.018Z

You may well ask 'what is PHP ' ?
Not sure I know but I will try!

Well it is a programming language which in simple terms is used to make web pages DO SOMETHING.

To make them accept and receive input and make them dynamic rather than static and as I understand it - which is not much as yet - mostly used to put stored information on to a web page or retrieve stored information. This information can be put in by the website user, usually using a form, or requested by the website user or put in and requested by the website author.

Shopping cart websites mostly use PHP i.e Amazon. Facebook uses PHP to run its social network site as does most sites that are not static web pages - this blog system probably runs using PHP.
It used to be called Personal Home Page, but it is now been changed to Hypertext Preprocessor.: http://en.wikipedia.org/wiki/PHP

Here is an example of some 'VERY VERY' basic PHP code:

//set up variables including some calculations
$myname = "Dave";                //My name
$jobnow = "Lecturer" ;           // my job now
$agenow = 56 ;                   // My age as of 2010
$yearnow = 2010 ;                // This year
$years = 5 ;                     // number for calculation
$newyear = $yearnow+$years;      // result of variables $yearnow and $years added together
$newage = $agenow+$years;        // result of variables $agenow and $years added together
$lifelater = "sailing round the Mediterranean" ; // what I would like to be doing

// This example shows variables (above) being echoed to the screen,
// and also a variable used in an inline calculation (65-$agenow below)

echo "Hello! my name is "."$myname" .". It is ". "$yearnow" . " and I am currently " ."$agenow". " and a "."$jobnow" . ". In " . "$years" . " years time it will be " . "$newyear" . " and I will be ". "$newage"
. " and ". "$lifelater" . " - I hope. It will be another ", 65-$agenow , " years before I am able to retire fully." ;

?>

Do I understand it ?
Sadly after a 3 day intensive course - no not really! - I hope to in about 2 months as we have two assignments to do over 2 months, but on the course I found it hard to grasp

This was part of my frustration on the course. The last time I did a course that involved any sort of web technology was about 10 years ago, but then I was always the star pupil. The one that got it straight away, flew ahead and helped others in the group and came away with a merit if not a distinction.

I already knew that in the last 10 years my brain has become not what it then was. I am aware that my memory and my ability to grasp new concepts are diminishing, I guess it is age?

Well I hope it is just age, as dementia runs in our family and if you have HIV you are hugely more likely to get this than the average person and there is something called HIV dementia which you can get even if your HIV is controlled as mine is by drugs.

So I really fear any signs that my mind is not functioning as it did in any way and while I'm not sure of the extent of it I know I am not imagining that my mental abilities are not what they were, so anything that confirms this is highly upsetting to me.

So I knew this course would be hard and more difficult than I may once have found it. but I was astounded by how hard it was and how difficult for me to grasp things I know I may have grasped much quicker in the past.

But what was even more worrying is I found I had forgotten stuff I used to know off by heart - such as HTML & CSS code which I taught myself many years ago. And also realized that as I have done a smattering of programming theory before that some of the concepts I used to know. And while I used theses concepts in other programming languages such as visual basic and C++ I should have understood the concepts and been able to work out how to use them in PHP.

What was worrying was I had forgotten stuff I knew I once knew, and when I tried to remember or relearn it was like there was a hole where the memory should be that try as I might, I could not fill!!!

- it felt very strange and I truly then really started during the course to wonder if I really do have the onset of dementia ? it was more than just not being able to grasp something , it felt like something in my head was missing!!!

That alone would have made me cry with frustration in itself and indeed embarrassingly did a couple of times during the 3 days - what a wally!! the others in the group must have thought me!!!!!!!!!! well I have a good idea what some thought, some were very kind but others I know found me a disruption.

But also I had to cope with:

The almost agoraphobia I feel right now when out of the house for any length of time after not being out for more than a couple of hours for over 6 months, especially on my own with no one I knew.
Meeting new people and trying to relate to them ( that course would have gone so differently for me if a friend had come . Hazel was going to come but decided not to . If she had been there I know I would have been able to hold it together with no problem. But I seem to be incapable of coping with any situation where I do not know anyone now)
Having to cope with my extreme lack of self esteem and total paranoia of how others are viewing me! Of course if I draw attention to the fact I feel self conscious and feel I do not fit in ( and at the moment I often do) this makes it worse and draws attention to myself more - an makes me look like a complete wally!!
Fearing my mind just would not be up to the course and confirmation that it may not be!
Being outside my work comfort zone i.e not in front of my own computer with the programs I use installed, for instance there was not even Dreamweaver on the laptop I had and I have not even written HTML without Dreamweaver for many years ( also I had to use a laptop and my eyes are not good enough to see the screen properly, especially small bits of code like stops and double speech and single speech marks etc. So at home I use two large screens)
Being on a course i.e and away from home when I was feeling ill
Getting myself to a college on time when I have not HAD to be anywhere on time for at least 3 years.

The worse in terms of social interaction was having to do the course with people I did not know.

To be fair while there was one or two who did not know anyone. But most were either lecturers, IT employees or existing students at the college who know others on the course.
And this would not have mattered quite so much to me if this had not been an intensive course i.e had been one day a week or had only been for a couple of hours a day, as my frustrations of it all would not have built up or had time to dissipate in between sessions. And ther would have been more time to get to know the other participants and feel more comfortable with them.

This would not matter one iota to the others there as this was such a minuscule part f the lives of busy people who meet new people every day.
But for me it was a huge thing to attempt

Which is terrible as considering I was a student at that college full time for 3 years once and also taught web design and digital imaging as a lecturer there!!!!

It is amazing how a few life events can change things for you so much !

A Breif Foray into the Real World

2010-02-18T12:53:00.006Z

The last few days I have spent on a course in PHP programming at a local college.
This was VERY hard as in truth I have become over the last 6 months something of a recluse.

When first diagnosed and after the initial shock that lasted about 3 months quite honestly it was a relief to know what was wrong as finally I had a reason for why I had been feeling so physically, and to a degree mentally, absolutely awful for so long.

Then I felt OK and in fact quite positive for quite a while as I felt that yes I have HIV I but have skills I will devote what is left of my useful life to promote awareness of HIV to try to prevent at least one person getting it and volunteering for HIV services or running or being involved in peer support groups.

It started well in that I joined PozFem UK http://www.poz-fem-uk.org/ which was very positive for me and became a regional coordinator and helping them set up their web forum.

On the back of this I started a women's group for HIV women with KPS our local HIV charity and tried to put myself forward to do talks as a positive speaker on HIV and attempted to do other awareness i.e by appearing in magazines, newspapers and latterly TV - as I will be on Embarrassing Bodies on Channel 4 on March 5th 2010 , not as someone who see their doctors with an embarrassing condition but as someone who explains what it is like to live with HIV.

But gradually I found that in Cornwall at least my input is not much wanted and most of the stuff I tried to do failed.

Partly it seems to be because I am too open about begin HIV even for the local HIV charity - but I refuse to be otherwise even if this leaves me with no support - which of course it has!!

The women s group dwindled to no one. & came initially but most women were worried about how open I had been about being HIV and that I had goes public in the papers and I think feared being outed themselves due to association with me.

Well I know that this was felt by most and one women told me in the group she would kill me if I ever spoke to her on the street and another came to the group just to harangue me about begin open and my views I expressed early on in this blog. I was polite to her as I could see she was genuinely upset - but CRIKEY this is my blog!!!!

Another who did not come to the group, she never even gave it a try, rang me very angry with me that I had appeared in a magazine about HIV and living in Cornwall that her mum read??!!!!!

How that mattered I do not know as I have never met this woman, nor do I know her mum, nor her me? The argument seemed to be that by letting the public know that people in Cornwall have HIV it will somehow out her to her friends and neighbors - I just did not get it!!

But I DO UNDERSTAND that what matters is they felt like that and if they did then a womens group in Cornwall with me having anything to do with it would not work, nor could I expect a lot of support from most women with HIV in Cornwall myself.That I may have made a different decision had I known before I started how most people with HIV are living secret lives and more so women with HIV - at least in Cornwall.
But it is to late for me to go back into the closet now, nor do I want to !

I do have to point out that there have been two exceptions to this attitude by two women with HIV who live in Cornwall, but sadly because of work and other reasons they can not come to the group.

In addition KPS never have asked to use my services as a public speaker after I did it once and was too vocal and monopolized the group I was asked to speak to.

( and sadly I learned by this that if you have a small slot to talk abut HIV in a conference of meeting about something else, this was about gyny cancers, not to monopolize more of the slot than you have been given. But this was my first time and I was just to passionate about being given the opportunity to educate about HIV and if I was asked a second time I know I would get it right. I have practiced what I would say both in PozFem groups and on my own and I would never make the same mistake again, but I blew it and KPS never asked me to do it again!!! Surely you are allowed to make mistakes and learn???)

All this failed so I turned myself to other activities and did a Art curse which went OK but I got over ambitious and thought I could do an Art MA at Falmouth Art College without first doing a degree as I have a HND in Multimedia Design.

But I failed to get in .

These failures mentioned above are not the only failures I have had in carving out a role for myself that I feel is a useful use of my time and will do something to raise awareness in Cornwall of HIV , nor are they the only things I have attempted and failed at in the last year. They are just some of them. And i did not fail through lack of trying. To keep my self confidence and self esteem, which is rocky at the best of times I needed at least one success - everyone needs this. But i have not had any recently and I have become increasingly despondent .

So about 6 months ago I became very demoralized and have hardly been out for the last 6 months and not mixed with anyone apart from my family.

This is terribly bad for me.
My social skills and my ability to interact on a 'small talk' level where appropriate and not on an emotional level with everyone regardless were hard won as due to my childhood I had to learn them from scratch when I became an adult and went into the world of youth work and teaching.

As they are learned late they are easily lost if I do not relate to people face to face for a while.
I now find I currently have no social skills and lack confidence completely face to face.

My high emotional level of interaction is absolutely fine when relating on support forums etc on the internet as in text only and not face to face there is no point in saying anything at all if all you say is small talk like, nasty weather or respond to someone who says they have a problem with 'there there' and never mind!

But face to face especially with people you do not know, it does not go down well and you do not usually get anyone wanting to continue to get to know you.

I also for the first time feel to a dregree in public internally ashamed that I am HIV - this is whether anyone knows this or not - But most do know as I wear the AIDs ribbon and other HIV badges all the time and I made a pact with myself I would tell people about being HIV+ as one I can not lead a double life and this affects every aspect of my life but also I want to treat HIV as I would any illness. And while others would not tell anyone they had diabetes, cancer whatever, I would. It is my nature to tell people if I have an illness that is affecting me both physically and mentally and perhaps affecting my performance in what ever sphere I am in - and HIV does do this to me

But also will all issues I have faced in life, a stay in a psychiatric hospital as a teenager, PNI, childhood sexual abuse my way of coping anyway is to tell people so I have got it over with and have nothing to feel I am hiding and no one can gossip behind my back about anything I have not told them myself.

It may not be for everyone, but I am in my 50s and it is a strategy that works for me

So I decided to go back to what I know i.e technology and the web. And do an intensive course in PHP programming as it was not included on my HND and I have tried on my own but just could not grasp it and it would be useful for the PNI website and to run forums on HIV and also if I ever did decide to go back ito commercial web design it would be useful there too.

But I was left utterly angry with myself for finding it so difficult to cope with a course with strangers, my behavior on that course an how difficult I found the work.

Illness - my bigest nightmare!

2010-02-18T11:44:00.002Z

Why did it matter to me so much that I had the galloping trots, gripes and felt sick when I had to attend the three day course I have just done?

Most people would have just accepted that they either had to go in and do it as the course was a one off and only three days, or just not go. And that if they choose to attend, while it is not pleasant to do a course when you have daireea, feel sick and have griping stomach pains, they would just have got on with it and NOT felt close to tears as I did for all of the 3 days. ( which was triggered by feeling ill, but once I was in that place where i feel totally inadequate, vulnerable and tearful because I am ill, everything sets it off and I can not get out of it!)

For someone who has such a 'thing' about illness and especially vomiting, HIV is one of the worst things that can happen to you. Well I know HIV is one of the worst things that can happen to anyone actually but I am just talking about my own particular perspective and how having HIV affects me due to my fear of illness.

When I was first diagnosed - and at such a late stage of HIV infection i.e late diagnoses - after the initial shock that lasted about 3 months quite honestly it was a relief as finally I had a reason for why I had been feeling so physically, and to a degree mentally, absolutely awful for so long.

The way I felt mentally is not obvioulsy directly due to the HIV, but it is the way I react to not feeling physically well. I basically have a good body and probably genetically predisposed to health, so when I am ill it really gets me down but also unexplained illness gets me down even more due to some issues in my childhood about havign a father who abhorred illness, could not accept anyone was ill in his family unless it was proved in triplicate by doctors and even then harangued and abused you for being ill,or even saying you felt ill. He insisted he was never ill and all illness was in the mind so if you were ill it was a sign of having a 'week mind' and being a week person.

Oh I know what crap that is
And that it was his fear of illness, not mine!!

But you internalize your parents beliefs even if you fight against doing this and know they are rubbish - or simply do not apply to you or are not part of your beliefs - it is still in your subconscious . Well my fathers attitude toward illness is in mine anyway. Which is i.e if you are ill it is due to your own inadequacies and that you are week, and if you are/of feel ill with no explanation from a physician, then it is all in your mind and you are not a worthy person.

Sadly - for me and my dad - I have a food intolerance to cheese and all cheese products that made me feel sick and vomit all the time as a child, plus get migraines and other symptoms.

This did NOT go down well with my father, as no one could work out while I was always feeling ill and no doctor could find any reason, but as they had to admit it was very real all they could come up with was that it was 'psychosomatic' which pleased my father fine as this is what he thought all illnesses were anyway .

So I got no sympathy at all when ill and especially when it manifested itself in an obvious way such as the shits or vomiting. Nor would he let my mum give me any sympathy or care when I was ill, as if she did he abused her. he was an abusive man to my mum anyway and she for many years was in fear of his verbal and physical violence

So I grew up with a fear of being ill.

But while I retain a hatred of being ill in any way this fear became specifically a fear of diarrhea but mostly a fear of vomiting when my mum was pregnant with my younger brother, because I saw him abuse her if she vomited due to pregnancy sickness - I wont go into what he did if she vomited but it was awful to witness as a 4 year old

At one point in my life - when 17 this fear, emectophobia, completely disabled me and I was hospitalized for it .

But since then as an adult I learned to cope with it and as long as I was ill at home and not out in a public place I could cope but in the end I even learned to cope publicly, and from 19 to when I found I had HIV I NEVER let it affect my life. I trained as a teacher, youth worker and latterly as a web designer and worked and had a full life.

But sadly because I now know I have HIV, and have had persistent stomach symptoms, which started before I found I had HIV and it was one of the first reasons for me to feel something was wrong with my health.

But the HIV meds also make me feel sick and upset my digestion, so now my fear of illness has once again become problematic and especially I fear being taken ill and especially vomiting when in a public place.

So once again - and for the first time in many years I have difficulties sometimes going out and mixing with people publicly.

I am OK as long as I feel fine , but if I feel ill and have to go out, it is a nightmare for me and my behavior also is not very adult sadly.