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.
Mister Bump 
Thank you for the ping-back. Excellent description of the fatigue and what one has to do to save energy, before collapsing. Due to my having Transverse Myelitis, a neurological disorder, I experience chronic fatigue and also have similar paths that I follow. I don’t think many realise just how debilitating the fatigue is. Thank you for this, I couldn’t have put it better myself.
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Thanks, I’ve found I have to talk about it in a very roundabout way. Makes more sense to talk about how I need to behave differently, then go into reasons for that. Otherwise, people will just read the first line and say, “So what? I feel fit to drop after a hard day’s shopping”, or something equally dumb.
I’m lucky in that I don’t just write off whole days to fatigue, though I know people who do. I’ll feel it walking down the road, say, but I know I can stop, get my breath back, then continue. And I get there eventually, just don’t set your clock by it 🙂.
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I have to tidy up or do the dishes in ten-minute blocks then stop for ten minutes. I just can’t exert myself or stand for any more than that otherwise I feel faint and I go temporarily ‘blind’ – everything goes black. But, like you, I just have to work around it. I just wish people were able to understand the term fatigue. Caz x
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I must admit, I never pushed it to the point where things went dark. I did however bit the bullet and buy a dishwasher after realising that I just wasn’t able to wash things properly by hand. Fortunately only the two of us now so it only gets used every few days. The detergent they use worries me – it’ll take paint off things like measuring jugs if they have enough washes. Fortunately, measuring things is for wimps 🙂.
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Lol – yep, a dishwasher would be good but like you, there’s only two of us 🙂
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I did my routines all the time to save energy. Now I’m just tired a lot. The problem is that I’m too tired to think about a more flexible routine. 🙄
But I get it, you need to find some way to get things done. It’s so good when it all works out but it is quite an exercise to built some working routine due to fluctuating energy levels. Does your energy level differ from day to day or do you know what you can expect more or less?
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Thinking is the thing I do better than ever (honest 🙂), fortunately. To the point where I berate myself when I do something out of sequence because I know it is taking more effort than should be necessary.
There are two types of variations, really, long and short-term. Long term has definitely improved. For instance, it took the best part of a year for me to be able to leave the house at all, so that was a barrier to doing pretty much anything useful. Linear over time, I’d say. I have been known to get quite anal and time myself over a set distance (about 500m) every six months or so. Last time out, I clocked 70% of Google’s walking speed. I know because I wrote about it!
Short term, not really, or at least I don’t notice. My week is basically a Tuesday and a Wednesday at the moment. I do find myself looking forward to a Thursday, just when everything is done and there are no deadlines to keep. But even on days I don’t go out, I still get washed, dressed and “work”. Although “work” today has just been doing some Powerpoints for Age UK, activities in a local town, to pass on to any interested clients.
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It’s good to notice some progress no? I think I’ll try to set some goals too and track it a little just to see how I improve. I hope I’ll improve otherwise it will be a huge dissapointement.
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Would it surprise you to learn that I had all sorts of sensors on my bike to try to detect improvement? Measuring these things is vital, that was my reason for starting this blog in the first place. Otherwise I see myself every day and see no improvement whatever.
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Haha I know and that is a good reason of course! I used my blog to see when I felt really bad and told it to my psychiatrist today 🙂 So I also track!
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Do you blog on different subjects? I know I do now, compared to then. I was like a filled out beach ball. At the time of the stroke it was like someone let the air out, everything just contracted. Now, I see myself gradually reflating.
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I’m struggling with that to be honest. I want to blog about something different but I don’t know what at this point. I like my subject because I know somethings about it. On the other hand I sometimes feel that it’s not good for my mental health to focus all the time on depression. I hope I can reflate a bit and find other fun things to blog about. But then I worry that my readers will not like it. 🤷♂️
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You *are* reflating, Kacha. Might not seem like it, but we are our own worst critics, don’t forget. I enjoy your posts simply because they are in an area I know very little about, so they present a challenge to me. I once wrote a post about what the difference was between a psychiatrist and a psychologist – that’s about my limit!
Bear in mind that some people on here will create posts on here which are no more than a link to YouTube videos, that you take the trouble to actually write something, I appreciate. YouTube videos are okay, by the way, but (for anybody) just adding that little personal anecdote improves them I think. I find I pick up a lot, too, just from other posts. I’ve started keeping a spreadsheet of “potential topics, one day when I can be arsed”. For example, someone just posted the other week on their childhood “what did I want to be when I grew up”. I thought that might be a nice subject (one day when I can be arsed 🙂).
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Thank you for your kind words! Maybe I don’t need to worry so much and things will come naturally as for topics to write about. There is a lot happening in my life and I need to process things first. Good idea to have a spreadsheet. I write things down on small papers here and there and end up losing the notes 🙃 Other posts are inspiring too that is true. Just for fun: I wanted to be a lawyer or a plummer 🙂
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Far richer as a plumber than a psychologist! What went wrong? 😆
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