Category: Misc

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

I had a thought a couple of days ago about how I have felt about not being able to do things, over the several years since the stroke. When I next looked at WordPress, I saw that somebody had posted on a similar subject. As aspect of the post was about people needed to learn to laugh at themselves, I guess. Same subject, different context. So, it was a sign!

For me, it was not a process of learning to laugh, but learning to shrug, really. Things are what they are, and if I couldn’t (can’t) manage something, I had (have) two choices, to accept it, or to think of a workaround. In that respect, your brain really is key. So there have been wins, but there has been lots of frustration along the way.

There are lots of things I needed to relearn after the stroke. I guess the biggest individual thing was to get back onto my feet and master walking again – that started about a month post-stroke, tiny steps around my bed, and I have become stronger ever since. Even then, it took the best part of a year before I was good enough to walk any kind of distance.

My arm, though, still poses problems to this day. More specifically, my hand. It’s got a flicker but not really any more usable than the day I had the stroke. So, this workaround notion is ongoing.

Two-handed things are a struggle. It’s kinda weird, these are everyday tasks that just require two hands, that I never really used to even think about.

Buttering a piece of bread, for example. More specifically, how to accomplish it without (a) the spread running away from me, and (b) the piece of bread running away from me. 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 a long time ago, and I can think about them and chuckle. I can even share tips with other survivors – just last week, how to brush their teeth one-handed! (Clue – you squeeze the toothpaste directly into your mouth, instead of trying to squeeze it onto the brush, which is just gonna move.) I can’t stress enough how trivial these things are – they’re things we’ve done our whole lives and never thought twice.

So I can chuckle now, although it was bloody frustrating at the time. Some things, like my socks, I am trained. Other things, like my teeth, I thought of a workaround.

Some things are still out of reach. In particular, gardening. I used to allow my garden to run wild flourish each year, and maybe two weekends per year would involve lots of chopping, lots of cutting, and a couple of trips to the dump. So I have all the equipment – I even bought a trailer for the occasion!

No longer – most garden tools here are deliberately made two-handed, plus just lifting the things, with what was my weaker hand in any case, is beyond me. I even bought one of those new, lightweight, battery-operated hedge trimmers, figured out how I could rig it to work one-handed, but even a couple of pounds was too much. Okay, these things have double-switches for a reason, too, so I’m also kinda aware thet each of my workarounds is disabling a safety feature. I haven’t even tried working around the chainsaw (yet).

Staying on gardening, just before the stroke, I bought a new petrol mower with a turnkey ignition, and I can manage that – in fact, the turnkey makes all the difference. Although this, too, requires two-handed starting, I worked out how to trick that. Emptying the grass cuttings is also a knack that I mastered. Fortunately the mower is also self-propelled – otherwise I wouldn’t have a hope of pushing this 100 lbs machine across the lawn.

So there are ways I can contribute, things I have worked out how to do. But it has been frustrating, along the way. Even then, I note that the old me could mow both of our lawns in an hour, where now, it is one lawn per day, with breaks partway through.

But, there’s no point being frustrated here, especially with things like gardening. My strength is what it is, and speed isn’t important, so I have to just shrug my shoulders. And 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.