Here’s something I can’t figure out and I wondered if anyone has any input. My worst fatigue always hits me about 10:30 am. And interestingly I start to perk up and feel better at the end of the day, around 4 or 5 pm, and I feel pretty good for the evening. You’d think it would be the opposite. Anyone else have the same experience. Thanks. Jeanne
I don’t know why it happens. It’s usually the afternoons for me. It’s like hitting a brick wall. I have to sleep. 15 minutes of sleep and I’m OK again. Sometimes though, I can go through the whole day and not feel any fatigue. It’s very strange.
My theory is that your brain will allow you freedom for a while, then wants to continue the healing process.
For a couple of years the fatigue got me after just two hours freedom. So I had to amend my activities to fit in. The severity of the fatigue has eased.
I am sure that night time sleep is critical. I took a long time to establish a sleep pattern, which is a totally different pattern from pre stroke. I now retire at 10pm and I need 7.5 hours sleep. I never go to bed in the daytime. This has not cleared the fatigue, but it has made life more manageable.
It is notable that gardenning does ease the fatigue. I suspect that cooking can also ease the fatigue.
Long covid has identical symptoms and loads of research is being done for long covid. Maybe we can benefit from the findings.
So I guess we just have to learn how to cope as best we can with our errant brain.
Best wishes
Colin
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Hi Jean , No I am different! 10.30 am , back for 3 or 4 hours bed rest , can’t manage rest of day otherwise. 9.30 pm bed . Usually min 9 hours sleep . 2.5 years on , FATIGUE not improved. Good talking David.
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Hello Jeanne, in the late morning my brain is still a bit groggy, and so it has to work harder to get sorted, this I believe causes it to be fatigued. I gradually start building up steam after 3 pm. By the evening, and late evening I am fairly operable until about midnight. Sometimes, I have wished the world’s active schedule was reversed, so that the nighttime became the daytime, and vice-versa. I need 8 hrs sleep, and generally do not drop off until 2 am.
Thanks for replying, Minnie. I don’t dare sleep during the day, as it might “take the edge off” at night and make it harder for me to sleep at night. I only sleep well if I’m really tired. I guess this stroke fatigue affects everyone differently.
Colin, What you said really makes sense to me. I never thought about that my brain is just “done” with my freedom by 10:30 am and wants to heal. Because then around noon I eat and take an hour’s rest (no sleeping). So then my brain is probably ready to give it a go again. I also need 7.5 hours sleep at night. I’m usually falling asleep in my t.v. chair by 9:00pm.
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David-- So, it’s 10:30 am for you as well. Interesting. I am 3 1/2 years out from my stroke. I think it’s getting a little better. For, although I complain, I usually am able to take a 2 mile walk around 8 am, and I am able to function during the afternoon. This would not have been possible a year ago. Thanks for answering my post.
Thanks for responding, Rups. You have a good point. It may be that I feel better later in the day, as my brain gets food and oxygen and use and “builds up steam” . You’re amazing if you are operable until midnight. I’m nodding off in front of the t.v. by 9 pm.
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I have to limit the time length for that reason. No more than 15 minutes (I set the alarm on my phone) if I’m driving I have to find somewhere to stop (it’s not safe to carry on when I ‘hit the wall’). I don’t go to bed as early as before, but neither do I miss my favourite TV programmes because I dozed off in the evening.
Hi Jeanne
That’s really interesting, as are all of the replies. I’m unsure if my exhaustion is Post Stroke Fatigue, or the Obstructive Sleep Apnoea that was diagnosed soon after my Stroke, (I could sleep all day and all night & thankfully my Doctor sent me to a Sleep Clinic). For I’m still exhausted, despite being treated with a CPAP (Constant Positive Airways Pressure) machine to keep my airways open and so prevent the relaxation going too far and preventing breathing. I will have to monitor my tiredness better and see if there is some kind of pattern. Covid has, of course, prevented further follow up to investigate this exceptional fatigue. What I do know is that I have more energy after waking, even though it does take me some time to actually ‘come to’, but it soon disappears, and I’m better exerting myself in small amounts of time, then resting and returning later when I feel up to tackling something else. I will sometimes even spend a whole day in bed (for example, after the fun of Christmas day with my family) for I will benefit with more energy the day after that rest!
Susie
I seem to go quite a few days and then have anything from 1/2 day to 2 days of “down time”. I think for me this is part of the healing process. After a few days of “normal” life there’s a lot the brain has been working on but has to do it in a different way and find new neural paths etc, I seem to reach a point where I can’t process anything much new and that’s where the mental fatigue appears - just can’t seem to focus for long or do much - it’s like just coasting along in a car in neutral.
I can’t predict when it will happen but do expect it after a few days of relatively intense thinking, at the moment it’s following on from my staged return to work. I have accepted it happens and we’ve adjusted our expectations to cope. I haven’t needed to sleep, but generally just watch telly, listen to an e-book or go for a gentle stroll. The fog eventually clears and I can pick up where I left of again.
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Yes, Jeanne, I do and have done for five years. Mine starts roughly the same time as yours and by noonI feel in a brain fog. I nap till 1pm and,oddly, can stay awake and active till 11pm. Interestingly, on holiday I can’t nap so the fog I feel evaporates after a bit. My partner thinks I’m fatigued partly through lack of stimulus but mostly through self fulfilling prophecy. I have learnt to live with it
I’m in my eighth year of recovery and my sleep pattern has change several times over the last few years but one thing is constant, the midday exhaustion! Sometimes I wonder if I can stay awake long enough to finish eating. Then I crash and am usually asleep in minutes and can stay that way for up to an hour and a half but half hour is the minimum requirement and then can see the day through till 9.30 in the evening.
Deigh
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One thing I think I should add. Sometimes, at 10:30 when I feel real tired, I eat something–like a piece of cheese or some yogurt-something healthy. Sometimes this makes me feel a little better. So, lowered blood sugar at certain times of the day may make the fatigue worse, and food helps. (I have normal blood sugar.) Jeanne
Deigh- I won’t let myself fall asleep as I’m afraid I’ll be waking up in the middle of the night or have trouble falling asleep at night because I won’t be sleepy enough. Does sleeping 30-60 minutes during the day make it hard for you to sleep at night? I’m a light sleeper. Jeanne
No, that after lunch nap sets me up for the rest of the day. At the moment my sleeping plans are working well but it has not always been so. For many years pre-stroke I would wake in the early hours and used the time to write, after an hour I’d return to bed and drop off instantly. I managed to write three books using this system. A halfhour nap early afternoon made up the time.
Being the boss I had a bed in my photographic room and used to sneak in there after lunch! Staff knew not to disturb me. I lost the use of one lung in my sixties and this was my way of making the day possible.
My stroke 7 years ago made me change the pattern a bit. Getting up in the early hours was a no-no, so I just had learn new techniques of getting my rest.
Deigh
Hello @axnr911, I’ve always been a bit of a night owl as opposed to a lark. My brain has always been groggy in the morning, I guess this just makes it harder with an injury up there. It takes time for me to get the engine warm. I find as things quieten down of an evening, I can focus more, and feel less demands. Everyone has a different routine, that would be “hardwired” for many.
Hi,I also want to sleep at 10.30ish although I only get up at 9am and I also need 7hrs plus sleep. I had my stroke over 3 years ago but I do fall asleep around 8pm for about half an hour. No one tells you anything about fatigue after a stroke.
Hi Jeanne
A fascinating topic and, just as every stroke is quite different and unique, so it is with fatigue. Not quite everyone suffers from fatigue post-stroke, although it is one of the most common symptoms. For some, it never leaves completely. For others, it lessens over a space of time and can actually disappear.
I well remember the early days when a shower was, quite literally, a day’s work. The utter fatigue after such a simple activity was debilitating. Setting serious goals for progress was a great idea, but any day I pushed too far, I suffered by hitting a brick wall the next day, unable even to get out of bed. While I loved having visitors, I found their visits so incredibly exhausting. I learned, after some time, to build in rest days immediately following any day which I was able to predict would be busy.
If the body is telling you it needs to rest, it is well worth listening. This is such an important part of the healing process. Look forward in hope!
Very best wishes for 2022, and richest blessings
Stewart
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