Out of the city.

Creating a new life.

It’s time.

If you’d told me when this all began that it would end up with me leaving my life in the city to find a new area, a new home, new job, new friends, and so on, I’d have told you to get stuffed. Mostly because I wouldn’t have wanted to believe that could be the outcome, rather than because it wasn’t true.

But it’s not just the stroke that’s got me to this point.

If you haven’t worked it out already, I live in London. I haven’t named locations much before for various reasons, and I probably won’t blog on where I’m going either. It’s a security thing. London is an unusual place. There are big, huge jobs here, and very expensive housing. It’s brilliant, and there’s also lots of free things to do. But it’s not sustainable for me in the long term.

Even before the stroke, I had a plan to move out of the city “at some point”. At that time I thought I’d commute into town for work for many years before finally bowing out of city life completely. But it hasn’t turned out like that.

As you know, I left my job last April. Exactly three months after I returned to work (part-time at first) exactly three months after my stroke. I’ve never gone into the whys and wherefores, but it’s what happened, and I’ve been finishing an MSc and doing a bit of freelance work since. But the house I rent is being sold and it’s time for me to create some lifelong stability for myself.  So I want to buy a house.

In London houses are expensive. Even with the brilliant salary I had before I was only ever going to be able to buy a cupboard in a location I liked or a small flat in a place I didn’t. To buy a two or three bed house with a little garden means making a big move. And I need that security. And I need a full time job to pay for it because that’s how one gets a mortgage. While my brain works again as it did before in thinking and doing capacity, I do find a need more control over my hours and pattern of work than before the stroke. That doesn’t mean I don’t work as hard nor that I work any less hours, just that I need to be able to have a little control over them. For example, if I have two full days of meetings and/or presenting/coaching/training big groups then I need the third day to be a very quiet one. I can still work but I’m not going to be able to repeat the previous two days that day.

Now, if you’re about to say, “Well I’ve never been able to do that, so now you’re just normal like everyone else,” – please don’t. I might shoot you. I’m so sick of people saying that. I might have always been your normal but it’s never been mine. And it’s my normal that I measure everything against, not yours. Sorry if that sounds harsh but after the 100th person has said it you just stop explaining….

So. The idea is to move out of London. Rent a place while I find a job. Get a job that’s a bit more provincial (and therefore hopefully a little more controllable than the 24/7 on call job of before). Buy a little house. Live. I know, it won’t be that easy, but I’ve worked out that even if I lost a big chunk of my old salary, the combination of my London-sized deposit and drastically cheaper house prices means it’s do-able.

I move on 30 June. For the following few weeks I’m going to take a holiday at the very beautiful and mercifully empty flat of an amazing friend in a seaside town. And then make the move to the final destination.

Oh, and I was thinking, should I turn this blog into a book in the few weeks that I’m there? I don’t know. I can download all the content easily enough…

There are two significant stories that are missing from this blog. The first is about a boy, and the second is the real whys and wherefores about why I left my job and what a cock-up one, or perhaps two, individuals who called themselves HR professionals made (needless to say this wasn’t my boss nor my boss’s boss, who were both 100% fantastic). Never before has it been so satisfying to be able to answer the statement, “Well, you obviously aren’t clear on the HR law around this,” with “Actually, my degree is in HR and I worked in this very department for some time before you arrived,” been so bloody satisfying.

Like I said, there was a lot I didn’t feel I could blog about!  In some cases it was things weren’t my prerogative to share (Liz Jones anyone?).  With regard to leaving work, I didn’t want to taint the innocent, and I wanted to retain my ability to rise above it all and preserve my relationship with an organisation – and many people – that I love. But, in hindsight, the work stuff was actually pretty outrageous and, besides, I might have a way to keep it relatively anonymous… maybe.

Anyway, I think I’ve decided I’m going to write it. Mainly because I’ve been asked to, and the boy surprised me a great deal by saying he thought that I should.

Whether I do anything with it afterward, well that we shall have to wait and see!

Wish me luck with the move!

For ease, I’ve also added them below too.

Thanks to the Young Stroke Survivors group for posting these.

• Balance changes after a stroke
• Effects of a cerebellar stroke
• Depression after a stroke
• Coping in a time of major change

(Personal details blocked out, sorry!)

“Recanalisation” means the artery having blood flowing through it again. In my case, the clot still appears to be there.  Good job he explained that was the case and that’s what the aspirin is for.  Guess I’d better start taking it more diligently then!

The phone rang and it was someone saying they were from a trial I was on. I supplied the name of it before I clocked that was kind of an odd thing to do. I know, I’m so suspicious..!

Seriously though, it was such an odd call that I was checking the trial website while I was on the phone to make sure the name he gave me was a name on the trial and… well, normally a researcher calls me. This guy was the Professor who heads up the whole thing? Spare time on his hands of an evening obviously……..

Hey ho. Got my next neurology appointment through – don’t have to see them now until 8 November 2012 unless there’s an issue. And as promised they moved me onto the new clinic. But it’s still held in the exact same place. The oddest place. Where?

The stroke clinic is held in the Limb Fitting Centre. Yeah. The limb fitting centre. First time I went there the receptionist looked at me with a, ‘Yep, you’re in the right place and we don’t know why either. You may keep your limbs and take a seat’.

Phew.

Here’s the answers to my questions, in no particular order, and what happens next.

(1) Aspirin.  The 75mg a day of baby aspirin has to continue for two reasons.  First, the clot is still there in my vertebral artery (in the back of my neck).  The aspirin prevents it doing any more damage. Second, there is the minuscule chance that there is some kind of congenital weakness there – he made it sound more like winning the euromillions type odds than getting struck by boring old lightening, though the figure of 5% chances of reoccurrence on a tear has been bandied around the VAD group  recently.  In any case a baby aspirin would prevent this doing much harm so it would make sense to continue that even if the clot ever clears itself.

(2) Scans.  They are putting all my scans on a CD for me, and it’ll be ready in a couple of weeks.  If I can work out how to find the right ones, I’ll post a couple.  The one in May was an MRI and it suggests the clot is still completely occluding the artery.  Apparently CT is much better than MRI for seeing vessels but CT is strong x-rays and I’ve had too many in the past 12 months out of necessity, so they won’t do another for maybe a year, just to see what’s going on.

(3) I’ve been moved on to a young stroke survivor clinic.  Not sure what I was in before but it’ll be the same doc so I don’t think it makes any difference.  I don’t see him again for a year.

(4) Tiredness.  I got off very lightly on this one compared with some of my friends, so I don’t want to overplay it.  But I’m aware that, having moved by work base from my house to an office set up that takes 20 minutes on a packed train (even though I avoid rush hour) means i can’t then do most evenings and weekends out and about because something has to give.  I asked whether that’s just being out of practice, being a year older(!) or from the brain injury but pre-fixed it with, “Look I’m sure you can’t tell either but.”  He said, without hesitation, it’s the stroke and that most of the younger patients have it.

He suggested that older people are retired so many not notice tiredness and I’ve been shielded from it by organising my own work days.  I work long hours but because I’ve avoided commutes and sitting still at a desk for 5 hours straight (I never sat still for more than an hour in my ‘real’ job and I am desk based in the office as I’m the only one working for me there!).  He says stop trying to be there 5 days a week and work from home a couple of days a week.  Of course, I have some worries about what happens if I need a ‘real’ job in the new year… this is where I have to question the wisdom of the advice which was something like:

“Any employer that doesn’t give their staff a week off after a week of really long hours in an emergency isn’t the right employer.”

He’s a neurologist in an NHS hospital, so I’m kind of assuming he has weeks like this but the two people I told since have both done what I did: laughed.  My friends make me feel far less cynical!

I guess it’s a case of building up instead of jumping in the deep end again.  I’m not prepared to sacrifice my whole outside-work life (which I did when I briefly went back to work for three few months after) so I’m going to use the next few weeks to build up the hours not working from home and make sure I’m working away from the home during the week without issue over the next few weeks.  I’d rather do it while I don’t have an employer than find out what happens at the same time I start a new job (if my current work for myself doesn’t result in a decent enough income!).

Anyway, that’s all.

Thanks for finding me at my new URL home.  Do keep in touch.

I love WordPress, and I’m very grateful to them for hosting AfterStrokeParty for free at it’s previous home.  They’ve been generally fantastic.  In fact, I’m going to keep using their brilliant, free software. But…

www.AfterStrokeParty.Wordpress.com

HAS MOVED!

From today you can see the entire site, and new content from now on, here, and only here, at

www.AfterStrokeParty.com

IMPORTANT if you get updates by email:  I won’t update AfterStrokeParty on WordPress any more, so your subscription was based there, it won’t work for you any more.  I’ll attempt to move your subscription over to this site.  That’s trickier than it sounds, but that’s good as it protects you from spam!  Anyway, I will try, so if you get an email asking you to confirm your new subscription to AfterStrokeParty.com, it’s kosher!  Click the link in that email to retain your subscription.

And if that fails, or you just want to subscribe yourself, use this form here.  Sorry it’s ugly!  I kind of expected better from Google!

In the meantime, this appeared on the Young Stroke Survivors facebook page this morning:

That’s the first time I’ve seen a five percent number.

I suspect that he’ll probably discharge me permanently tomorrow.  There’s a possibility he’ll want another MRI or CT I suppose, but my instinct says he’ll let me go after tomorrow.  Unless there are persistent issues, there’s often nothing new to tell after a year.  And it’s been just over a year now.  It feels like a very long time ago… and what an interesting year it has been on many fronts.

It’s got me thinking about questions I want to ask him, as well as things that have changed in the past year.  Let’s take each in turn.

Questions I want to ask:

Do I really need to take a baby aspirin a day forever?  There’s lots of research that apparently suggests this could have loads of benefits for loads of people.  However, I’m on it because I had a stroke.  But my blood clotted not because there is anything wrong with my blood, but because I tore an artery in my neck.  So I’m not clear what benefits it has for me – particularly stroke related ones.  Aspirin doesn’t bother me, despite the long-term concerns some have over cancer of the stomach, but it strikes me this may be another “this is what we do after stroke” without actually considering it in context of the cause.  Who knows, I’ll ask tomorrow.

How can I tell what is brain injury related and what just ‘is’?  For example, I’m pretty sure that my balance is lousy in the dark because of the brain injury.  It was fine before the stroke and, though it is a gazillion times better than when I couldn’t stand up very well in the light, let alone the dark, I’m still wary of pitch black as I can’t tell ‘upright’ without a point of reference!

But, on the other hand, having started to work from a new location, I’m very aware that a week of travelling to and from plus work in between wears me out far more than it did before and far more than doing the same amount of work from home.  But how does one know if that’s a brain injury issue or it’s just about taking a few weeks to get used to the joys of commuting?  The implications are more important if I need seek a full-time “proper job” in the new year rather than continuing to work for myself.

Can I have copies of the scan pictures please.  No, I don’t need them but I’d quite like them.  I particularly like the ‘meteor’ shower one and, let’s face it, they’re a lot more arty to me than they are useful to them!

And as for reflecting on change in the past year, I’m still wondering whether, at some point, I might reveal some of the realities of what went on at the beginning of this year.

There are some major things I felt I couldn’t reveal on the blog (and even sometimes in person).

Some of it because stroke affects everything, including the most important people in your life, and I didn’t – and don’t – feel my VIPs were for public consumption.

But the area I would have liked to have vented about, and recorded for others to learn from, is that sometimes people who are – frankly – paid to know a lot better, sometimes exhibit some at-best-daft and at-worst-devastating behaviours that can force one to have to make very serious decisions at a time when it’s not ideal to have to make any major decisions.  But I couldn’t, for fear of getting tangled up in legal issues.

Yeah.  Cos that’s what you need when you’re trying to get your life back together after a stroke..!

(I’m reminded of one 30-something stroke patient being told a hospital wanted to sue him because he blogged what was going on in a rather forthright manner.  Obviously they couldn’t really, because he was telling the truth but, even though my issues were nothing like that, you can probably guess that it’s not the time when you really feel like being bothered with a fight.  Though not stepping up for a fight when I felt I probably should was a whole new experience in itself for me!)

I have to remind myself that the point of this blog was, in the beginning, to communicate what was going on to my friends, so I didn’t have to arrange fielding of phone calls.  It became an outlet for me to communicate with friends and make some new friends, when I was limited in terms of what I could do.  And it became my offering to anyone following in my footsteps, from someone who was prepared to tell it like it is.  You might remember I could only find one blog written by someone roughly my age (hello Dom Pardy), and one isn’t enough.  Plus Dom’s a bloke and so some of our issues are very different!

So why am I still bothered about the missing bit about the “at-best-daft and at-worst-devastating behaviours” not being here?  Well, because I strongly feel that some learning should come of every experience and I’m not sure anyone has learned anything from that little bundle except me.  In fact, I don’t even think some people that should know what happened have got the slightest clue that it did.  I chose to take the moral high ground, choose dignified silence and rest assured in the knowledge that I was better than that and should just let the offending issue go as a lost cause.  After all, all those people I loved and/or respected before the stroke remained the same people I loved and respected afterwards so, in that sense, the important things remained in tact.

My dilemma, of course, is that as well as wanting to vent about it, it would be nice to have a few selected people say, “Oh my god, you are kidding, that’s beyond outrageous…!”  And I’d like those who may go through similar things to know they aren’t alone.

I don’t hold out any hope for those who should take the opportunity to reflect upon their behaviour, but I think there is a lot of learning to be had for those that would have acted differently if they’d know what was going on and for those who may, unfortunately, have to face the same kinds of issues.

I’m still not at a point where I feel I can tell.  But watch this space because, in time, I just might find a way to do it.

Are there any other bigger issues that I didn’t report than I can share without reading and rereading in the manner I’m doing with the previous paragraphs?  Erm.  Well…

Some of you now know it can be quite amusing to try explaining what it’s like not to know how to use muscles that you have, and to have to identify muscles you’d never considered the existence of before.  All the things you ‘just know‘ how to do you?  You have to work out the method of doing them before you can figure out how to make that happen.  Really basic things, like picking up a cup, start to become long processes that involve looking at the cup, telling your brain where it is and working out how to get your hand to the cup and grip it tight enough to bring it to your mouth.  My muscles could do all those things, I just couldn’t remember how to tell it to do it.  I’d never had to think about the ‘how’ before.  And, in fact, in the case of cups I just used straws for weeks because it was easier!!!

But think of all the things you don’t realise you ‘know‘ how to do, and then try working out how to do them.  Like picking up a cup, going to the loo, or just standing up.  Seriously, give it a go sometime.  Stop where you are, and say in your head what you’re going to move in order to do whatever it is you need to do.  Trickier than it sounds!

Other things… yeah.  I never told anyone at work that my doctor repeatedly offered to sign me off for another 3-6 months in the few weeks after I went back to work.   I wanted to go back, and I wanted to deal with whatever issues arose from that, but I didn’t have to stay once I got there.  I could have opted out for another few months but, sadly, I’m just the kind of person who prefers dealing with things that come up rather than putting them on ice!  Besides, I was bored stupid at home all day.

What else?  Well, I ultimately decided to go it alone in terms of job. I had an MSc thesis to write and I would have had to choose between that and full-time work, certainly for the first few months.  I’ve nearly finished the thesis, am doing some work freelance for a rather cool company or two, and I’ve launched a couple of websites.

You know about www.hospitalessentials.com which I set up based on my experience – and quite a lot of yours – in UK hospitals, and that site will have a massive makeover in the new year.

I’m also working really hard on www.ContinuityInBusiness.com which is going to be all about business continuity exercise downloads, and might even earn me a wage, possibly, hopefully, when I begin putting the paid-for resources up.  (They’re in the testing phase at the moment, so it might be a month or more!)

But, I suppose, that is all set against the background that the reality is that, though I easily work more than 60 hours a week for myself, studying, websiting and meeting ever increasing numbers of professionals regarding how we’ll use the thesis research and for the Continuity in Business scenario-based exercise thing, it may be that its necessary financially for me to revert back to “proper” paid employment sometime next year, if these things don’t continue to thrive.

Obviously I hope they will, but in the back of my mind, recent experiments with working from another location 5-days a week have been partially successful.  I’ve found that three days there and the rest from home is optimal for me.  It may be that it just takes time to get back into a rhythm after so long dictating my own working patterns, or it may be I’m often working over 7 days a week rather than the more traditional 5.  But there is a nagging fear somewhere that it might not be the case, and that might – potentially – be a problem if I do need to find a “proper job” next year.

Still… facing most things head-on has always been my way and I don’t suppose that will ever change!

I remember it’s a week since, or a month since, or a year since. And not just about the stroke, but about EVERYTHING. I’m sure it’s very annoying for people who don’t. But I do. You probably noticed.

On October 29th it’s World Stroke Day.

Maybe you could mark this one too?

I’d narrowed it down to a choice between a little cottage with no parking or a flat with no garden. I had decided on the house right up until the end of the day when I realised the ‘lock-up-and-leave-ability’ of the flat made it more suitable.

Tomorrow last year, which was a Monday, all this started. Not really sure how I feel about that.  Almost everything has changed since that time; job, relationship, everything.

This week a lot of things change again, with some of my favourite people moving overseas permanently or being redeployed. It’s weird.

Maybe the second October is my time for that?

There are a couple of people who appreciate the strange enormity of the date, or that I “do” anniversaries. I was given a magnum of Berry Bros champagne earlier in the year. I think it gets opened tomorrow with whoever rocks up for supper…