Pause for Thought

I saw a prompt flash by this morning, on which the theme is snippet.

Aw, man, I’ve got to tell you, I am an expert at lockdown! You guys have been living it since March, I’ve been living it since 2016! Every day, recovering from my stroke, those same four walls… Okay, as I improved I did begin to get out of the house a bit, but really a fraction compared to my pre-stroke life.

And the idea that you’re restricted? Well, of course you are, in one sense. But in other respects…

One thing you can do, unlimited, is think. Let me tell you, during my time convalescing, I solved many of the world’s ills. And in terms of recording them – that was one of the reasons for this blog, so there are thoughts on all sorts of subjects!

I’ll even attach one for you to read, if you like, from about 15 months after my stroke. It is a snippet of my politics and, re-reading it, I still agree with it fully. It is about electoral reform in the UK, which I think comes second only to climate change. Frankly, it doesn’t matter whether you agree with me or whether you think I’m a fruitcake – my point is that I thought about it. I have a solution, which works for me.

These downtimes are a gift to us to allow us to get our heads straight!

Electoral Reform

One of my pet crusades is electoral reform. I still think that we need to have two levels of parliament. The lower house (House of Commons) deals with all the day-to-day issues, the party politics, and forms the government. Exactly as today. The role of the upper chamber (House of Lords) is really to sanity-check, … Continue reading “Electoral Reform”

Triggers

I was chatting to another blogger in a comment section the other day – I can’t remember whether it was their post or mine – and we vaguely touched on the topic of trigger words.

What I mean by a trigger word is just something that somebody will use, most likely inadvertently, but which lights our fuse.

I have been on both sides of this.

I was once talking to somebody, the subject must have been the military, and I used the word squaddie. Now, as far as I was/am concerned, this is a standard, slang word in UK English to refer to a serviceman. It is not offensive, not as far as I am concerned. Anybody from a private to a general, to a sailor, to an airman could legitimately be called a squaddie. But this chap was upset that I used the word. I didn’t (don’t) understand why he was upset, but I understood that he was upset, so I used a different word with him thereafter. I mean, I didn’t really see any point in winding this chap up unnecessarily.

Then, after my stroke, the very last thing I wanted was to be labelled a victim. Actually, that is quite common among stroke survivors. There is a feeling that shit happens, but somebody then chooses to be a victim of it or not, i.e. whether they let it change them.

But I notice that this feeling is not universal, though. Not really talking about stroke survivors now, but I have met other people to whom shit has happened, and who will quite happily self-identify as being a victim of something.

I mean, mostly it doesn’t really bother me. I think people use such words because they are ignorant that the word causes offence, not because they’re malicious. I think you have to go beyond the word itself, and look at the intent behind it. As an example, not so very long ago here, it was acceptable in society to refer to a black person as coloured, and I think most people would have used that word, without intending any malice. Over time, people have realised that use of this word is offensive, and it is no longer used today. But I don’t think people ever used the word out of malice.

Having said that, when people do use trigger words, especially common trigger words which are known to cause offence to some people, I do sometimes look at them and wonder shouldn’t they know better?

Any of you guys have trigger words?

Obsession

One of my friends posted the other day an informative article about OCD. It’s interesting, because there is something similar with stroke. As far as I am concerned, there is not a hint of disorder about it, but it is definitely a little obsessive.

Let me tell you about the kettle. I drink lots of tea, for which I boil a kettle. My rule? after the kettle boils, I pour my tea. If, after that, there is not enough water for another cup, I have a task to fill the kettle once again. Once full, I turn the kettle on, but don’t bother waiting for it to boil, as I’ve already poured my cuppa. I head to the lounge to drink it in my armchair.

Meantime, the kettle boils.

The reason I boil the water is because in the kettle will stay quite hot. When I want the next cup, it won’t take as long to boil, which means that I’ll spend less time standing, waiting for it. That’s the key here, the second-highest consideration behind just making the tea itself.

In fact I apply this rule all day, unless this is my last cup of the evening. If it is the last cup of the evening, I’ll fill the kettle but won’t boil it. There’s no point because it’ll be well and truly cooled by morning. Lastly, I have a nifty little gadget which will allow me to trigger the kettle from the comfort of my bed next morning.

Okay, right now, you should be thinking this is all perfectly logical, but why on earth has he gone into so much detail?

What I just did was to give you an example of how stroke affects me. I’m limited physically (in this instance, how long I can stand at a worktop before having to rest), so I think things through to work out the most efficient pathway to getting the job done.

I bet you never thought that there was an efficient way to making a cup of tea, did you? But there is. And with the fatigue I have experienced since the stroke, my choice of pathway can make the difference between enjoying my cuppa or having to postpone the exercise until later, until after I’ve rested.

Even my able-bodied wife, who is a nurse, does not realise that any level of planning is involved. I never did myself, before…. She makes a drink, and leaves the kettle empty. I grrrr, but what can I say? For anybody else, this stuff is trivial.

Of course, I have become stronger over the last few years, but in many ways this is very much like being a toddler all over again, except that I am now able to process the thoughts which go with the experience.

For exactly the same reason, my getting up routine. I can at least trigger the kettle from bed, but as the water nears its boiling point I need to be busy.

First stop is the toilet, because which of us can begin the day without having a pee? Next stop is the lounge, where I turn on the computer and retrieve last night’s teacup. I’ll take that and leave it by the kettle, which is by now well on its way. Plus, there are two hollow-legged cats who need their breakfast! No gadgets to placate them, unfortunately. I get that done as quickly as possible, before I head to the bathroom to prick my finger. A glucometer test, provided there aren’t any mishaps, is a two-minute affair, and a measurement before I’ve drunk or eaten anything provides a baseline which guides my insulin dose. By the time I am finished, the kettle will have boiled. My duties over, I can make my cuppa and return to the lounge, where the computer should have started by now and should be ready to do something useful.

This is a set pathway, the shortest path between the rooms, which I follow every morning. It gets my fasting blood sugar, my first cuppa, and my computer up-and-running, without my usually having to wait for anything.

But in both of these cases, please look past the detail. What I actually do, the order in which I do it, is irrelevant. That I have contrived a set order of ceremonies at all, is what is relevant.

You wouldn’t think somebody might need a rest while just preparing a drink, would you? But that is one of the ways in which fatigue hits, and 70% of stroke survivors experience some degree of fatigue. I don’t really expect people to be able to empathise with me – until I had the stroke myself, it isn’t something I could have grasped, but if it is something which interests you, I hope my examples give you some insight. What might be trivial for some will be a marathon for others.

In Training

Somebody posted on WP the other day, an aspect was how people needed to laugh at themselves. So, I felt inspired…

For me, following the stroke, it was not quite learning to laugh, but learning to shrug. Things are what they are, and if I can’t manage something, I have two choices, either accept it, or think of a workaround. In that respect, thinking is key. There have been many wins, but there has also been frustration along the way.

Many things, I needed to relearn after the stroke, not least, to walk again – that started about a month post-stroke, tiny steps around my bed. It took almost a year before I left the house, aalthough I have become stronger over time.

My arm still poses problems. My hand, mostly. It’s got a flicker but not really any more usable than the day I had the stroke. So, workarounds are ongoing. Two-handed tasks are a struggle. Everyday tasks that just require two hands, that I never really used to even think about before.

Opening a jar, cutting a slice of cheese, buttering a piece of bread, for example. Even now, my wife does not realise that the spread is jammed in between those two other things, making it imnmovable, for a reason!

Another example is my socks. If you don’t believe me, try it, one handed. I once posted on here about the arguments I used to have with my socks! Not a word of a lie!

However, I mastered these battles, and I can think about them now and chuckle. I can even share tips with other survivors – just last week, how to brush their teeth one-handed! (Answer – you squeeze the toothpaste directly into your mouth.) I can’t stress enough how trivial these things are – they’re things we’ve done our whole lives and never thought twice about them.

Although I can now laugh, it was bloody frustrating at the time. Socks, I am trained – things like my teeth, I work around.

Some things are still out of reach. Gardening. I allowed my garden to run wild flourish each year, and would spend two weekends per year chopping, making a couple of trips to the dump. So I have all the equipment – I even bought a trailer for the occasion!

But I can’t do any of that now. Most garden tools here are deliberately made two-handed, plus just lifting them, with my right hand (I was left-handed) is beyond me. I bought one of those new, lightweight, battery-operated hedge trimmers, figured out how I could rig it to work one-handed, but even that’s a struggle. These things have double-switches for a reason, too, so I’m aware that disabling safety features is probably not a good idea. I haven’t even tried using my chainsaw one-handed (yet).

I can, at least, mow the lawn – I bought a petrol mower with a turnkey ignition, otherwise I’d be stuffed. But, bloody hell, it is heavy, and I had to work out how to start it one-handed. Emptying the grass cuttings is also a knack that I mastered. Little things. Thank goodness the mower is at least self-propelled

So there are ways I contribute, things I have learned how to do. But you can imagine the frustration along the way. Even so, I acutely aware that the old me could mow both lawns in an hour, these days it is a day each. But… shrug. I’ll just have to let my wife get on with it!

Checkout

I was up at the hospital again yesterday afternoon. Actually I had quite an easy time of it, because I went around with the Stroke Association co-ordinator, and she did most of the talking.

We approach things differently, but there again, she wants to inform patients about what services the charity offers when someone gets home, and I tend to have a more superficial conversation – how people are getting on, how they’re liking the food, sleeping at night and so on. I’ll try to have a laugh with them, because hospitals can be pretty unamusing places.

At the same time, it was quite sad, because we saw one woman – a youngster, in stroke terms. Only five or so years older than me. I know, what does that make me? I met her once, a few years before either of us had strokes, so I remember this confident, intelligent woman. Of course, she’s at a low ebb now and I can’t help but root for her. During this last month or so, we’ve also met her partner, and he seems a decent chap too.

This poor woman is unrecognisable, a shadow of her former self. When we spoke to her partner, he told us that she had also been quite uncooperative both in terms of therapy and even with things like eating.

I can kind of understand that. She’s an intelligent woman. Anybody with even half a brain, one can’t blame them for remembering what they were, looking at where they are now, and just giving up. There is, as the song goes, a time to be born, a time to die. A stroke crystallises that. Every death is premature, we always long for that one, last, additional conversation, but death itself is inevitable. The circumstances become important.

I’ve seen it in a few people, and I think somebody’s level of fight is a factor in their recovery, and once they give up, people do just fade away. And “fight” is something they need to have for themselves, nobody can really help. Fortunately, because I only ever see a snapshot every few weeks, there is a lot I don’t see. It’s better that way. I also think that progress is a factor in someone’s stay. The staff have two goals, first to usher you out of acute danger, and second to take you as far as they can. When a patient stops progressing, they’ve done all they can, and will shuffle them off to the next stage, whether that be home, or a care home, or whatever. And I know from my own experience that the most intensive therapy happened while I was in hospital, it pretty much dried up afterwards. I guess there is also a third factor – how badly the bed is required for the next person. Sad, but true.

I don’t know sometimes whether I’m lucky or not. In my working life I always had a view of the big picture, in fact that was mainly why people hired me, but we were often forced by circumstances to work tactically instead. Toward something in the right general direction, but not exactly where we wanted to be. So I’m able to put blinkers on, and just work towards the next goal.

I mean, that kind of attitude was invaluable with the stroke, where I went from fit and active one week, to literally having to be carried to the toilet the next. Big picture, fuck this for a game of soldiers, time to cash in my chips. Blinkers on, I got myself on my feet again. Then ten yards, then twenty. Whilst I don’t think I’ll ever be invited onto a catwalk, I get myself around.

But who could blame someone for not seeing things that way? Especially when they’re in hospital, when this is all so raw?

Academic

There are a couple of causes of stroke. One of them (less common) is where a nearby blood vessel bursts, and bleeds onto your brain. The other is where a blood clot develops somewhere in your body, and travels up to your brain. When the clot travels to your heart instead, it’s a heart attack. I’d recognise the names if I saw them, but they aren’t something I ever committed to memory. Greek, of course.

Both of these causes have the same direct result. They prevent fresh blood (complete with oxygen) from getting to your brain, and a part of the brain dies off. A stroke. So the cause doesn’t really matter, except academically. The effect is the same. In addition, the immediate treatments (if you’re lucky enough to get any) are totally different. The exact opposite, in fact.

One of the things that amuses me is that this is text book stuff. People from the Stroke Association, for example, will display their academic knowledge of stroke by talking about the different causes. It always tickled me, because after a stroke, to the patient it doesn’t really matter. It’s academic. Whereabouts the stroke hit matters, because that dictates how you’re affected.Even then it isn’t as clearcut as non-sufferers might have you think.

I remember one woman looking at me in disbelief when she asked what type of stroke I’d had, and I responded “dunno”. Actually, I knew full well, believe me I am an expert in my own health these days. (My unremarkability was confirmed by the stroke – I had the most common type of stroke and the most common type of injuries!) But I wanted to make the point that it was irrelevant.

I think a lot of it is to use the terms the clinicians use, to give the illusion of comprehension. There are several terms like that, related to stroke. I feel that they introduce an artificial language barrier, but charities like to use them anyway. In fact I fell out with a woman once on this exact subject. i commented that I disliked the use of these words. She responded by saying why they were used. I said I understood exactly why they were used, but that I disliked it anyway. In fact, this woman rubbed me up the wrong way, and I can see both sides – whilst they do insert a barrier, they are both universal and unambiguous, at least when they’re used in a context which requires clarity. Between clinicians, say. When charities use the words, they have no such requirements.

Facts and Figures

I have posted various one- or two-liners about stroke and the health service, but thought I should probably be a bit more detailed.

Firstly, somebody having a stroke has almost a 90% chance of survival (i.e. surviving more than thirty days after a stroke), so there are lots of us about the place. According to the Stroke Association, there are more than 100,000 strokes in the UK every year, and around 2 million stroke survivors in total. Think about that statistic for a moment. 2 million. The UK has a population of 60-odd million, so that’s one every thirty of us. Stretching that somewhat, this means that when you see a football match on television, there might be a thousand stroke survivors in the crowd. But that would mean a uniform distribution of stroke survivors in the population, personally I don’t know any survivor who gives a hoot about football!

I know that for me, the physiotherapy I received in hospital was brilliant. In contrast, condultants (the top doctors) were irrelevant and the quality of the general nursing variable – literally from very good to very bad. For me, hospital ended pretty much as soon as I was on my feet again, although I came home in a chair and was very unsteady at first. And there the help stopped. Unfortunately, I’m judging the whole package – acute care plus the rehabillitation afterwards – so my overall verdict is “poor”. I’ve heard the same verdict many times over, although my knowledge apart from my personal knowledge, is anecdotal. I have also heard some good-news stories, somebody receiving appropriate treatment a matter of minutes after having had a stroke, or having a really high level of rehabillitation, so I think treatment could best be described as patchy. I think when you talk about a stroke strategy, the very first goal must be universality.

Going on to disabilities, although most people will survive, almost 2/3 of survivors will leave hospital with some kind of disability. In that respect, I am absolutely common! The current disability benefit, PIP, then comes into play. It is a points system – I get points for not being able to use my arm. I get some points for not being able to walk far because of my stamina and my dodgy leg, but not enough to affect my overall result. If my arm were OK, I wouldn’t get the benefit at all. I was quite surprised at how little the benefit was. To give a point of reference, my weekly benefit used to take me about an hour to earn when I was at the height of my career. I think this is entirely deliberate – disabled people are not high enough on the radar to matter, because he who shouts loudest gets the most attention. The level of care after a stroke, and of benefits, leaves me in absolutely no doubt that, if you have a stroke, the state just expects you to die. My benefit has reduced since the stroke, just because I’m getting better, walking further etc. In principle this is fair enough, because I need less help than I did, although my expenses haven’t really changed. If anything, they increased once I was able just to leave the house.

There’s another side to this too. I’ve been strong enough to go back to work for some time, but not really to travel up to London on top of everything else. So, I’m constrained to looking locally, which reduces the number of opportunities considerably. I can’t blame anyone for that, except the stroke. My own fault for living where we do. And, where I used to be able to walk into the top City banks and not only get a job, but be well thought of by my co-workers, I now can’t even get an interview with local employers. I can consteuct all sorts of reasoning in my head to explain this – that my experience was so specialised that local employers feel intimidated by my cv – but really, at that point, I’m just playing mind games with myself. The Stroke Association again provide some estimates here to help. If the likelihood of an able-bodied person being out of work for eight years is x, then the probability of a stroke survivor still being unemployed eight years after their stroke is 2 or 3x. Personally, I still keep an eye out still, but I busy myself writing my own software from home – keeps my brain active and might actually help people. I’m fortunate enough to still have a small amount of savings tucked away, and have the knowledge to kick off a project from start to finish just by virtue of my experience being my own boss.

As if getting back into work isn’t hard enough, I spoke to one woman once who had been made to sit on her own, away from everyone else, just in case somebody “caught” her stroke! Not a word of a lie, this is people’s intelligence. The last I heard, her union was acting on her behalf.

Please, in writing this, the last thing I want is sympathy, I just wanted to give an insight.

Maillot Jaune

I wish to pay homage to cycling. At 40, I had a bit of a paunch and decided that I wasn’t getting any younger, so decided not to use the tube, in favour of cycling my two-stops-each-way instead. It took me a few years, but actually that short distance really helped with weight loss. So much that I rapidly dropped clothes sizes.

I reached the point, on a Friday afternoon, when I would miss not riding the bike at weekends. So, I bought a bike to use at home – a road bike, which is constrained to proper roads, but is good for speed and distance. This led to even longer rides still. It was not unusual for me to cover 300km/month – 200 miles? – on my bike. Mostly this was probably no more than a 50km/30mi radius from home, although I also took the bike on the ferry over to France for short breaks, and used to regularly put the bike on the rack when we went on holiday. In that manner, I cycled not just in France but also Luxembourg, Germany, Holland and Belgium. As you might imagine, starting at 40, I was never particularly a brilliant cyclist, but my enthusiasm was there.

I’d always quite liked professional cycle racing, but as somebody who was now a cyclist myself, I took a greater interest. I took days off from work to watch a few Tours of Britain, and even headed over to France a few times to watch Le Tour – I remember one year I flew the whole family out there for a few days so we could see a stage in the Pyrenees (the last time I flew). I loved track racing – passed all the training levels at my local track, Calshot, although they seemed only to want to train people for competition, which never really interested me – but I also went to meetings over in Flanders in Belgium – hallowed turf, the home of the sport. There was definitely something special about standing watching a race from the middle of a cycle track, with thousands of other peoplea a beer in one hand and a sausage in the other. And the professionals get up such a speed – in the region of 50 mph in some races – that each lap of the track is only 25s or so.

It turns out that stroke is a lot like cycling. When climbing a hill, for example, you’ve given your all, you’re running on empty, but there is no alternative other than to keep going. Stopping isn’t really an option, because you know you’ll never get going again. Even over time, you’ll get faster on a climb but you’ll never stop giving 100%. You develop an attitude to keep going – in a large part, it really is a state of mind rather than anything physical. There is no “can’t”, there is only sweat and effort as you “do”.

To a large extent stroke is similar. It can be, anyway. You can say “can’t”, you can spend all day every day in bed, but really, what is the point in doing that? You might as well just say your goodbyes and trot off. Especially somebody like me – the meds I take would do the job nicely, if I took enough of them. But, of course, I keep going. I climb that hill every day, just because that’s my nature. And I do my charity stuff. I’m not sure how much I’m appreciated by stroke survivors – I know I’d have appreciated speaking to someone like me, but equally I know I’m not typical of survivors – but I know my clients at Age UK appreciate my calls.

Plus, of course, in more specific things. You have to walk a half mile to the end of the road. You try and walk it taking eight breaks instead of twelve, say. You try and make each break last one minute instead of five. And all the while, the lactic acid is building and you calves are screaming for you to stop. When I first started walking (and had recovered enough to even get to the road in the first place) it really was getting from one wooden bench to the next, where I could sit and rest. But, you keep going. And you improve, but like any sportsman, you can’t ever get too satisfied, because there is always further to go.