Posted by: piclondon | August 13, 2013

Why didn’t this happen to me?

I suppose the grass is always greener…

20130813-080359.jpg

This one got me thinking, because sometimes I am quite sad. Frustrated sometimes too. Angry sometimes. And the sad again. And never about the stroke itself, but the crap I have to put up with on a daily basis as a result of the aftermath. Last week someone I work with made me giggle. You know that uncontrollable, it’s never going to end and we’re going to be in trouble any second kind of giggling? That. And while it happened I realised I don’t think I’ve laughed like that in at least two years. I miss that.

Quite a few people in the Facebook groups for younger stroke survivors make long lists of the things they’re going to do now. They talk about “bonus time”, “time cheated from death”, “extra time” and not wasting any more time. They want to live more and laugh more and love more.

I wonder more if I’m actually not supposed to be here. I conspire that things would make more sense that way.

In the western world most of us aren’t used to death any more. We find it shocking and surprising, often even when old people die. Previous generations didn’t. New death was as routine as new life. I’m sure it didn’t make it hurt any less, but it was part of life in a way that maybe we better understood that death is normal.

I’ve always had this thing about wondering where we should draw the line on saving people. I honestly don’t mean to be heartless but I wonder if, because we aren’t familiar with death and because we are capable of things, we save people we probably shouldn’t just because we can. I’m not advocating causing premature death, not treating illness, nor not fixing people, but I do wonder if we sometimes fight too hard to prevent the end.

If we think of people (or our pets) on an individual basis then of course we fight hard to save those people we love. But I wonder about the bigger picture, about the amount of time and money we pump into preventing death at all costs. If we don’t die of birth issues, or strokes, or cancer, we all live longer, and eventually die of something else, but do we live better?

After my stroke, when the possibility of relapse was higher than it is now, I made it very clear to my loved ones the circumstances under which I’d really value them not fighting to keep me mortally bound. What I didn’t tell them is that as the drip ran through my veins the first time, well even now, I wonder if they were supposed to let me go then. In the great scheme of things, the timing didn’t seem wrong.

Only one person asked me, some time after it happened, if I’d had any kind of near death experience. I told them I didn’t really know. I did have a particularly vivid dream in the stroke ICU where there were lovely red velvet curtained doors, but fancy swishy ones like at the theatre, at the end of a hallway. I got to choose whether I wanted to peek behind the curtains or go back and I said if go back and stay a while. But I don’t remember it being a big decision. It was kind of ok either way, like whether I wanted bacon or sausage for breakfast. It was probably a dream, or a day dream, or drugs dripping into my veins. But maybe the fact it didn’t feel like a big deal colours my world now.

Now, to prevent the worriers among you, I am not about to jump off a bridge or anything. That’s the trouble with knowing people I know are on the mailing list.

But it doesn’t mean I don’t struggle with the fact that it would have been easier and wiser for me to have gone than others who have.

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Posted by: piclondon | November 9, 2011

ANNOUNCEMENT: AfterStrokeParty is Moving

Hi there,  this is a quick announcement.

I love WordPress, and I’m very grateful to them for hosting AfterStrokeParty for free and being generally fantastic.  In fact, I’m going to keep using their brilliant, free software. But…

www.AfterStrokeParty.Wordpress.com

IS MOVING!

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

http://www.AfterStrokeParty.com

IMPORTANT if you get updates by email:  I won’t update AfterStrokeParty here on WordPress any more, so your subscription won’t work any more.  I’ll attempt to move your subscription over to the new 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, just CLICK HERE TO SUBSCRIBE.  Sorry it’s ugly!  I kind of expected better from Google!

 

Posted by: piclondon | November 9, 2011

5 percent?

Lots to say after yesterday, but I’ll write it up and post it before the weekend.

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.

 

Posted by: piclondon | November 7, 2011

Moving On…

Tomorrow I’m seeing the neuro at the stroke clinic at Hospital Number 2.  You’ll remember he stole me back from Hospital Number 3, in possible ego-related act for which I was grateful.  I haven’t seen him, or any other stroke related doctors, in six months.

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 http://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!

Posted by: piclondon | October 13, 2011

World Stroke Day

I do dates. You may have noticed.

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?

 


Posted by: piclondon | October 10, 2011

364 days ago…

This time last year I’d just gotten back from an Island where I’d been househunting.

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…

Posted by: piclondon | September 20, 2011

www.hospitalessentials.com

As some of you know, since my first day blogging from the hospital I’ve had a thing about ‘hospital kit’ lists.

If you haven’t planned your hospital trip then you arrive with nothing and are completely reliant on other people to find what you need from home or at the shops.  Call me cynical, but even with my list, directions within my house and explicit naming of shops, I wouldn’t have gotten much that I needed if my stepmum hadn’t gone along to ‘help’ (read: supervise and instruct).  And if I hadn’t been able to explain exactly what I needed that would have been another problem.  I blogged about kits lists a few times (e.g. from the hospital and a few weeks ago) and then decided I could do something about it.

I have a couple of ideas, one will take a bit of work.  The other is now online!!!

If you go to www.hospitalessentials.com you can click on the Kit Lists page.  On the page is a list of essentials, a list of nice-to-haves and a list of luxuries.  Find the list(s) you want and click for a printable sheet: that sheet includes the checklist and which high street stores sell which products.  The aim is you can get all the essentials going to the minimum number of shops and spending the minimum amount of money.

www.hospitalessentials.com

There are also ideas on useful gifts for people in hospital, and other stuff I learned the hard way.  For example,  how to get cheaper prescriptions in England, how to navigate patient transport, finding helpful books, access to every hospital address and telephone number in the UK, and resources including resources for carers.

All the resources and info are free, obviously, including the kit lists.  A number (though not all!) the links to useful gifts and the like are – she says in the spirit of full disclosure – affiliate links which means I might be able to cover the cost of the website from the little commissions, maybe, but it’ll never recommend something that isn’t recommended, if you see what I mean!

hospital essentials resources

It’s a start and I’ve got a bit of a vision for it so I’m going to work on it a bit.

I hope it’s helpful.

And yes, all the resources on the resource page (look up) that were recommended by the Facebook group are all on there now too.

I think.

I’d better just go check…

Posted by: piclondon | September 11, 2011

Resources page (look up!)

Right.  Ages ago I said to the Facebook Young Stroke Survivors Group that I’d put up a resources page collating a lot of what’s been said about what was useful.  I also asked them for things that they found useful.  They’re on the new resources page – look up, see the tab?

The things that seemed to come out top for all of us were a decent hospital kit (see here, here and the resources page) and, once we could read and take in the words again, a Kindle (3g wireless is useful when not at home or don’t have wifi, otherwise wifi kindle will suffice).  The miracle of these things is that you don’t have to balance keeping it open, keeping it up, or fiddle around with turning a page.  Plus you don’t have to leave the house or hospital to get new books.  What’s not to like.  They aren’t cheap… I think about £107 for the wifi and £152 for the 3g.  I got the 3g and love it.  One word of warning. I did manage to do the apparently impossible and break my screen about 9 months in but Amazon replaced it within 48 hours.

I’ve put up the books I’ve mentioned along the way.  Annoyingly only one of those is available on Kindle.  But then the cover for Julia Fox Garrison‘s book always makes me smile and you don’t get that on a Kindle!

The other thing I know I mentioned (but can’t find the entry) was that before I could read or enjoy TV I could – weirdly – sew.  Not intricately but enough to do the really basic Buttonbag kits I found at John Lewis, the only store I could get to for the first month or so after I came out of hospital.  So I put those up too.

Oh, and I’ve had a resource idea of my own.  One so simple I can’t believe no one else is already offering it, so I’m going to scour the internet and see if they are.

If not, well, Abby if you’re reading, I might be in touch to see if this could be a ‘Woolf’ project for two…

Posted by: piclondon | September 10, 2011

Stents, English and Facebook

No posts for ages and then suddenly three things to say.  This post has three points: stents may be bad, English speaking nurses are required and facebook support is priceless.

STENTS

My stroke was caused by a Vertebral Artery Dissection (VAD, a tear in an artery in my neck).  After, the artery occluded (blocked) and some people asked if I’d have to have a stent to open it up again.  My doctors never raised this but scan it once in a while to see if the occlusion is permanent or subject to change.  The stent-askers were mostly from the US, where it seems to be more popular.  Anyway, a US study now suggests you’re more likely to die if you have a stent than if you don’t – so much so they stopped the trial.  Click on this excerpt if you want the full article:

The difference is so significant that a trial was stopped early because data showed patients who received stents died more often and had more strokes than those treated with medical therapy alone: “We hypothesized that stenting would be more effective than medical therapy and found exactly the opposite.”

ENGLISH SPEAKING NURSES

It was hard to say this clearly when I was sick, because it sounded (at best) unfriendly and (at worst) possibly racist.  However, the fact remains that it was incredibly difficult being ill around nurses where their command of English wasn’t excellent.

The implications of misunderstanding ‘have had [pain meds]’ and ‘would like [pain meds]’ are significant.  In my case – and this happened more than once, as did other things – my frustration was I could understand what the deal and issues were but not always communicate it.  And trying to explain tenses and verbs to one’s nurse is not really what you’d prefer to be doing while you’re trying to, you know, not die and stuff.


Why am I mentioning this again now?

 Well, the House Of Lords got a warning about it from Lord (Robert) Winston.  Apparently we can’t even test the language skills (nor the nursing skills!!!) of European Union nurses which seems, well, utterly barking to me.    Don’t get me wrong, if they’re here legally, are clinically competent and speak (or at least understand) great English then I think our health service can use all the good staff it can get, but there have to be minimum qualifications for any job.

You can read more in The Telegraph or the Daily Mail.

FACEBOOK

I can’t remember if I’ve mentioned this before, but if you’re dealing with a stroke or a VAD then there are a couple of great forums on Facebook.  Even if you join, you don’t have to participate unless you want to.

Though I belong to both, I identify more with the Young Stroke Survivors than the Vertebral Artery Dissection group.  This is because I’ve a lot of the same issues as the stroke people, and don’t really identify with anything much on the VAD group.

But they are brilliant.  Yes, there are a few people who simply post about their woes (but at least they have an audience who knows what they are talking about and can respond).  Yes, there are some who want to tell everyone how wonderful it was to have had the opportunity to have had the stroke/VAD (but at least they point out that it’s not all bad).  But mostly it’s a group of people that you couldn’t easily pull together in real life.  I’ve made online friends, some of whom I hope I’ll meet one of these days.  You might remember me, in the first month after my stroke, blogging about Dom Pardy’s blog (see: what I said, or: the blog itself) and – if he doesn’t mind me saying so – I like to think he’s become a friend and that’s probably due to Facebook.

So if you’re looking for others who might know things, be interested in some of the same things or who will simply understand your world, then click on…!



Posted by: piclondon | July 12, 2011

Anniversaries of life and death

Humans spot patterns even when there are none.  It’s part of what we do to make sense of our world.  It helps us to feel order.

A few years ago, it seemed like every time I went on annual leave I’d come back to find another member of our team had taken a new job.  Now it’s measured in time since the stroke.

Exactly three months (to the very day) later, I went back to work; exactly six months (to the very day) later, I left said job permanently; and today, exactly nine months on, my boss left my old work too, and a dear person in my circle of friends has died, many decades too soon for my friends to bear.

Life is for living. Whatever we have we should make the most of it because we never know when it might be taken away.  Does that sound depressing? I don’t think it should be.  We have today.  Whatever state we’re in and whatever we feel we should have and don’t.  We have today. What should we do with it?

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