Hi all
there are so many questions on post stroke fatigue, I simply find it overwhelming to cope with well over 3 years after stroke.
My biggest concern is why does it seem so unpredictable? Like, I could have one or two days where it seems to lift and be ok, even after a busy day. Or I could have days where it’s so heavy and relentless, it will go on like this for days. No matter what I do, rest, sleep, keep busy, exercise, nothing makes a real difference. I do have the odd day where it seems to lift and I feel like me old self again, but it doesn’t last too long.
It just seems unmanageable, the more I try, the worse it is.
So 3 years on, shouldn’t it have started to get better by now? Shouldn’t the brain have repaired itself as much as it could? Why is it so varied? Why doesn’t rest help much?
I know that brain neuroplasticity is a complex thing, and it will use up a lot more energy to compensate for the injured parts. But this doesn’t explain the fatigue variables, like why it comes and goes, why it’s so unpredictable.
I know that other things can effect it, such as anxiety, depression, diet, sleep etc, but all that aside, it doesn’t explain much. I thought 3 years it would start to ease off, but it’s made no difference to me, the bad days are still bad, the odd good days are just not enough. One thing that causes anxious feelings is not knowing how you are going to be on the day, like at work, or and event, knowing that you might be totally exhausted creates so much worry. I have tried planning, like completely rest a day before event, then rest a day or two after event. It doesn’t make much difference, I either got it bad or I haven’t. I have watched many you tube videos, read research, but we have more questions than answers.
For myself, the spoon theory doesn’t work, if I wake up with it and just trying to manage it, it doesn’t do much, if I don’t wake up with it, then unless I really over do it, it’s usually much better, and I won’t start to feel it until later in the day, even then it’s not to bad.
It also seems like the more you try and rest and take it easy, the more tired you feel because you are not active enough, but if you are just too exhausted and struggling, the more you try get through it, the worse you feel, just can’t seem to win. The other thing is that post stroke fatigue makes all the other post stroke symptoms like pain, sensory overload, weakness etc seem a lot worse, so it’s not just a case of just feeling exhausted.
Any help or feedback on this would be helpful, it’s very frustrating for all of us who suffer with it, it makes such a difference to our lives, sometimes the less you try the better it is.
Thanks
