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.

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?

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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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.