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.

Progress

I must mention this briefly, since the purpose of this blog is to chart progress following the stroke. For the first time since the stroke, on Tuesday, I bought myself a new pair of shoes. Proper shoes, the sort I’d have worn before the stroke. M&S brown suedey brogues, Derby brogues apparently, lace-up, as you can see.

Well, that’s not quite true. Immediately after I left hospital, my wife took me out to the local shoe shop, just to get something that I could manage one-armed. I got something blue and velcro, to allow me to get them on with my dodgy arm. Blue. Velcro. Quite.

I wore these shoes only for the subsequent few months. They were blue and velcro, after all… Did I mention that?

Since that time, I’ve relied on a few pairs of trainers, which date from my pre-stroke days. Ironically, lace-up, although I managed to crack the problem of tying them. The main trainers, they’re a French brand that you don’t really get here. I bought them the last time I was in Holland. Happy memories all around.

I still can’t manage the laces, but discovered some corkscrew ones, made of elastic. Like this:

They kept the shoes tight enough that I could wear them. They come in a zillion different colours, so it was easy to find some that match the shoe (eBay to the rescue!) I’ve had to replace them a few times, so have now invested is some Hickies, which are uPVC, I think.They should last longer, in any case, and if you don’t look too closely, are pretty smart.

They loop around each pair of eyelets, as you can see, and fasten into themselves, making a loop. These things are more expensive, but I’m hoping they’ll last longer. There are various imitations – these things are only bits of plastic – but I’ve bought the real things. They come in several colours, and are my current go-to technology.

So, the Hickies are on. The shoe horn is on its way.I’m coming back!