Personal Progress (May 2020)

I’ve got to be honest, the stroke hasn’t really dominated things for quite some time. I mean, I have lasting effects with my arm and leg, but the actual stroke seems a long time ago.

The fatigue is still a biggie – I’m fed up that I get breathless when I walk from the lounge to the kitchen, but I have developed coping strategies. Same with my eyes, I believe my eyesight has stopped deteriorating but I’ve been told it’ll never actually improve from here. But for that, too, I have coping strategies. I do feel that if I ever met any of my online friends in real life, nobody would recognise me because doing things on a computer is a doddle compared to actually doing things. But the effects are what they are, and I’ll take any advantage I can.

Although it left lasting effects, I never really felt that I was defined by the stroke, even though for a while, I probably was. I did, however, feel that I had quite a unique perspective from which to speak.

When I started the blog, I decided to highlight that perspective to make it as in your face as possible – Stroke Survivor. But it is a long while since I posted anything stroke-related. I post on far more everyday things these days.

So I decided to change the name of the blog. I’ve been thinking about it for a while. I don’t feel I need that “in your face” aspect any longer.

In the next couple of weeks, therefore, I’m going to change the name of the blog. The name I thought of was Mister Bump. Still an oblique reference to the stroke, but far less direct. Sharp-eyed readers will already have noticed that I changed my email, one (eagle-eyed!) noticed that I’d already changed the header image. And the URL, blog title & logo will soon follow suit.

I’ll keep my personal identity – Stroke Survivor UK – unchanged for now, but I’ll probably change that too at some point. Probably by keeping my name the same for now, most of you won’t really notice any difference. And anybody who sends an email to the old address, I set up an alias so it’ll redirect automatically to the new one.

I’ve been reassured by the folks at WordPress that everything will morph from one name to the other quite seamlessly, links, reblogs, images, the lot, but I’ll believe it when it happens. So there might be a few funnies as I fix broken links. If you find one, please tell me.

Geography

I posted this morning (the post before this one) about how fast I could walk a certain route, but I re-read my post and felt that it required a bit of context.

I live on the very edge of a village. Quite literally, there are fields on two sides of my house, and a river a few hundred yards/metres away on the third.

A road runs through the village. If you understand UK road classifications, it is a ‘B’ road – the third tier of highway here. (If you don’t understand our roads, there is a Wikipedia article here.) Off this road are clusters of streets and houses, and I live along one of these streets (although it is pretty much a country lane by the time it gets to me). From my house to the bottom of this street, where it meets the road through the village, is about 800m. Half a mile. I remember these distances from when my GPS bicycle computer used to tell me.

From the end of my street, it is possible to carry on walking, through the centre of the village (a pub and around five shops), and out the other side. The centre is maybe at 1.5km from my house, about a mile. If I carry on walking past these shops, I come to a “main” road at about 2km (1¼ miles).

This main road is the one which leads to Salisbury, where I do most of my stuff. It is an ‘A’ road, our second tier of highway behind only motorways/freeways/autoroutes.

Bus

My bus comes out from Salisbury, along this ‘A’ road. It then turns along the ‘B’ road, and continues through the centre of the village. Lastly it turns down my street. It comes down the street only maybe 250m (what’s that, about a fifth of a mile?) before it stops, drops me off, and turns around to carry on its journey.

From the point where it drops me off, I have about 550m, or a third of a mile, to walk home. Hopefully these numbers tally up with my previous post.

Featured Image

My featured image, by the way, just shows a view along my “street”, taken from the bus stop. Last summer – the sky didn’t look like that yesterday! I was thinking of doing a “where I live” post one day, but I guess I did that now.

My Walking Speed

I know that Friday is my flashback day but, just this once, please indulge me because this is directly related to my stroke. It will benefit me to look back on this post, even if it is of limited value to anybody else.

I measure how fast I am walking every now and again, and yesterday was the day. I put my stopwatch on, to measure my walk home from the bus stop. Anal, I know, but I’d like to see how I’m doing. I compare myself to Google’s estimate, as you can see in the post below, from about eighteen months ago.

When I was in hospital, exactly four years ago, I could not walk, period. I needed people to help me get to the toilet, even. I managed to take a few steps while I was in there, and as I left hospital I could maybe walk about five yards/metres. I managed to get them to send a manual wheelchair, for longer distances. I don’t wish to make a political point but it was a battle just to get the chair in the first place, even as a loan. Plus I didn’t even want this thing, it was a lot off faff to take anywhere, not least I wanted to be walking again. So I started from there when I came home. It took me a year before I could even make the distance I’m talking about here (550m, about a third of a mile).

My numbers:

Google’s estimate (@ 3mph) 7 minutes
Time taken initially (2017) ~15 minutes 8 min slower (~50%)
Time taken (previous post, 3 Oct 2018 9½ minutes 2½ min slower (73%)
Time taken (yesterday) 8¼ minutes 1¼ minutes slower (85%)

My holy grail? That I can be as fast as, or faster than, Google. I was a lot lighter and fitter, and would have been a fast walker before the stroke, but you never think to measure how quickly you walk, do you? So while one day I’d like to be as quick as I used to be, I’ll settle for keeping up with Google.

One thing I still don’t have is the stamina to walk a long distance, so going forward maybe I need to time myself not just walking a third of a mile, but maybe a whole mile at a time? But I’ll maybe wait until summertime to do that! I did walk a mile as a sponsored event last summer – but I didn’t time it but it took a darned site longer to walk that mile than it does to walk three trips to the bus stop. After that, I needed to sleep, and I don’t normally sleep during the day these days.

Still, at least these numbers are going in the right direction. This would have been totally anal a few years ago, but I can’t stress enough how important it is for me to have goals, how important it is to be able to measure progress. If I didn’t do things like this, I’d see no improvement at all.

Mister Bump

Just as a little addendum to yesterday’s post, I had to go out yesterday and, when the bus drpped me back, I set the stopwatch and it took me 9½ minutes from the bus stop to home. I realise that won’t mean much to people who haven’t a clue where my bus stop is in relation to the house, but it means something to me. It is 0.3 miles away, according to Google, about 0.5km. Also according to Google, it projects a walking time of 7 minutes.

From the days when I started getting out and getting the bus, I’ve always allowed 20 minutes for the journey, so presumably at one stage it would have taken 15 minutes or so to make that walk.

Yesterday, I actually timed the walk at 9½ minutes. So, I think that makes me about 2/3 as fast as when I was healthy, give or…

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Nothing more than Feelings

I read another survivor’s post the other day, and they were talking about how they struggled to cope with their emotion. Emotion is something very intangible, but affects many (> 50%) survivors of all kinds of brain injuries, not just stroke.

I was not exempt from this, although I am pleased to say that sufficient time has passed, that I’m probably about the same as pre-stroke.

But I can remember one incident clearly, I must have been only a few months downstream. There’s no point trying to explain James Herriot, since his work must’ve been translated into most every language already – he will be on Wikipedia, if you’re really stuck. In the UK, it was also a TV series, and one afternoon I was watching one of the re-run episodes. One of the storylines was animal cruelty. Now, I was perfectly able to rationalise that a lot of Herriot’s work had only a passing resemblance to reality – he embellished quite a bit. Even moreso, I was perfectly able to rationalise that here before me was a troupe of actors (dog included) who were acting out a scene. Lastly, I am aware that the series was set in the 1930s, so even with the very slim probability that this story portrayed a real event, all parties would have long since shuffled off this mortal coil in any case. I could rationalise all of that. And yet I was in tears! That’s how your emotions are affected – you know something is nonsense, but it gets you anyway.

But that was probably more than three years ago, and these days I can generally be relied upon to keep that stiff upper lip, for which we British are so renowned.

Ironically, though, I do still feel some effect. I don’t know if this is due to the stroke, or just to getting older. The stroke probably aged me a lot, in terms of my outlook on life, so the distinctions are somewhat blurred.

It’s not when bad things happen, but good. If I see people behaving as they ought (according to my system of beliefs), then I can go giddy with excitement. Of course, we all have different systems, and I’m not going to let this post stray into my own values, but for all of us there will be things that tick that “good” box. Or a poignant song, maybe, which sparks some memory, perhaps of my own youth.

I really felt for this chap. But time has helped me. I’d never presume to be normal in any case, but…to get back to before.

Couch Potato

I’ve touched upon fatigue before in here as part of other posts, but wanted to write a note specifically about it today. There are other things I need to do today, so I will try to be brief.

Fatigue is a very hard thing to describe. I never really had any clue, pre-stroke, although it is a very common (>50%) effect of a stroke. That I never had any idea – maybe that helps a little to describe it? Something I had never felt before. Fatigue is that feeling where you’ve just got to sit down and take a break, which I suppose we all feel sometimes. The difference is that I get this walking from the lounge to the kitchen, or loading the dishwasher. These are probably not very good descriptions, but perhaps I can illustrate it better?

I was no stranger to exertion. I was a keen cyclist. I started too old to be competitive, but had the bikes (plural), had the garb, and put in the miles. I rode anything up to 100 miles per day, went over and cycled in Europe, and so on. Unfortunately, I never got to any real mountains, although there are a few challenges, even round here. You need a certain attitude to hills – anybody who is a serious cyclist will tell you – that you never give up. No matter how slow you get, you keep going forward. Stop, and you’ll not get going again. It’s that feeling of having to keep going despite the tank being empty. Keep Going.

That attitude is still relevant because it is exactly the attitude I need now. Because I feel I’m permanently running on empty. Of course, I do stop – I have to sometimes. Walking is an example – I had to re-learn to use my legs, and immediately afterwards could only walk a few yards. I was fortunate – I could get my breath back just by staying upright and stopping for a while, then starting again. In that way, I knew I could get five yards, ten, fifty, one hundred, with enough breaks in between. Earlier this year, I completed a mile sponsored walk – but don’t get me wrong, it took ¾ hour and I had to sleep afterwards. Of course, it has improved over time, exactly like a child – one day I’ll get to 10 miles, then 20, and so on. But it all hinges on “just keep going”. That’s fatigue – your body screams “stop” but your head wants to go on.

Step Out For Stroke, Salisbury, 8 Jun 2019

There’s plenty of coping advice out there. “Listen to your body”, “Slow Down”, all of it good I’m sure. But I try and push myself. I try to do things, I set myself goals. I want to sideline the effects of the stroke, to get back to before. A lot of things, I’ve discovered workarounds – it’s different to previously, but the accomplishments are still there. They mean more now.

I guess I am lucky. Some people will lose whole days, because they feel too fatigued to even get out of bed. Even on days where I don’t do much, I still function. I get up, I get showered, I get shaved, I get dressed, I work… And I don’t normally see my bed again for fifteen hours. But to cancel Thursday? Can you imagine?

Of course, fatigue makes its presence felt in other ways. Because I’m more tired, I do less. I’ve gone from XS before, to XL now, although thankfully I seem to have stopped – I guess sooner or later we hit equilibrium. But these days, the sofa is my best friend! I’ll just have to live – or die – with my weight. Many things lose their importance following a stroke.

The cats were good – stroke or no, they wanted feeding. I’m not sure how I managed it, but I’m glad I did. I guess I’m quicker now, and it’s good to get out of the chair.

That’s true of most things. I’m quicker now, both because I’m stronger and more practised, but they still require full power. “Effortless” may well be a word of the past.