I thought I would post a note about fatigue whixh so many stroke survivors experience. and some experiments I ve been doing with myself. my general experience of it is that for me it comes in episodes, and I have not been able to to accurately identify triggers. so this is what I have learnt recently. I keep a log of fatigue intensity to try and track what contributes to it. recently I have been pushing myself a little to improve my walking which is very laboured. I have also been re building a role in the family to support my children all young adults now by providing "Dad's taxi" now that I can drive again, this service is much in demand. I don't mind. I have come to accept a general level of hazy tiredness as normal. I don't like it but can tolerate it and can do things in spite of it. before the stroke. I had taken up fencing. I am the least sporty of people but I followed my children to the club and had a go myself and loved it. it turned out to be really important, partly because my coach and other club members were incredibly supportive in the crisis phase, immediately after the event, and have been great supporters since. they encouraged me to get back and fence from a seated position. I have done this successfully for a while now. it is real fencing just much faster as you are closer to your opponent. I t was amazing for cognitive recovery. in the last couple of weeks I asked my coach to help me get back on my feet. I can now balance ok in a standing position though my left leg is very weak and I still have foot drop. I can walk a few steps unaided but mostly rely on a stick for ballance. anyway, with a bit of support to stop me falling over I was able to traverse the width of the sports hall, on foot. the physical exercise was great and I felt pleasantly warmed up afterwards. it was a serious workout for my legs, and felt stiff the next day. interestingly the physical exertion didn't kick off a fatigue episode as I had expected. as I have posted previously I had a nightmare time with my job, which has now demised, with some compensation to me. the emotional stress of all that was much more clearly a trigger for fatigue than my physical exertions. I have confirmed this with other experiences recently, fortunately not as intense as the work debacle. it seems that emotional stress at least for me is a bigger contributor to fatigue episodes than anything else. I had a bad cold recently and that triggered heavy fatigue. also there is a feedback loop because fatigue makes me feel low, and the low mood intensifies the emotional stress which contributes to fatigue and down we go!
I am fortunate that mostly fatigue is generally not so intense as to prevent me doing things. it has some similarity with chronic fatigue syndrome and I have a friend who has that, and we compare notes. it is similarly episodic for her and when in remission she can function perfectly well but when fatigued it can be so intense she can barely get out of bed and can be housebound for days. she cannot work, as a musician, cannot commit to rehearsal schedules. it is not so debilitating for me, and I was able to work, though my performance was not what my employer wanted. of course the more stress I was under the worse I performed and round we go.
so I continue to explore the limits. and I do allow myself to rest for days if I need to. I suppose I decided not to wait until I feel better to go and do things, cos I might just not get there. I am just sharing my experience with you and would like to hear how it affects you, and anything that you have found that helps. so for me, managing emotional stress is important, but not easy. hydration seems to help clear my head sometimes. so I drink plenty of water. sleep of course, though as with many who experience neurological fatigue sleep is not always refreshing, it takes time to have a positive effect. so thats my story so far, a work in progress, I am not recommending my antics as a programme I am just testing my own limits with my particular injury and impairments.
thanks for reading, do share your experience and thoughts.
Hi Tony. Your post is most interesting. My fatigue was bad in the beginning, but has eased now and is down to one hour a day. The fatigue always comes on about noon. This means going anywhere at midday is quite debilitating and certainly not enjoyable. At a push I can last out till 3pm, but get quite frustrated and irritated, because I have not had the hour’s rest.
I also find a slight cold or a slight virus make the fatigue feel worse but some days are better than others. Good days make me push myself to do a little more....resulting in worse fatigue. I also believe in hydration and drinking water helps.
My exercise classes have improved me no end, especially my strength and balance. It’s all hard work, but I feel I am still making progress.
I too know a lass with CSF and I have all along tried to swap notes. But no one else seems to identify the similarity. She is being treated on a regular basis at one of the London teaching hospitals.
I too have a marker system for SF. Low means. as you put it, a hazy tiredness. Medium means I can carry on most tasks with dificulty and that I ought to rest. High means get out the car,ensure I cant be in danger and go and rest. Very high means I have to lie down and I am in great distress. If I sand then I will fall over.
I have had a few hours when the SF stopped. Boy did I notice the diffrence compared to low SF. Another world. I long to have that experience again.
I have fairly copious notes to identify triggers. Three years plus of daily notes. But I cant identify any revelation. I get wonderful "stroke naps" thats a sleep just to get over SF. Marvellous naps with no dreams and no after effects. I can tell the difference between this and night time sleep. It is essential to get my 7,5 hours night time sleep. Thats the one thing I can do to keep SF down.
I am at a total loss as to the relationship between exercise and cognitive stuff. I can do 45 minutes activity but then need a rest. I often nod off during these short rests. I can now sometnmes extend 45 to 60 minutes.
One thing that works forme: On getting up I wash shave dress make bed breakfast then I sit quietly for 30 minutes. Often nod off. It sets me for the day.
thanks for shared experience, it is a mysterious thing. the revelation for me recently was the link with emotional strain and this can come with intense social gatherings or conversations as well as the heavy duty conflicts I gad with work.
my grading system more or less matches your own. I think most days I have a manageable haziness that is tolerable though not particularly nice. my test for heavier days is whether I feel safe to drive and I am quite self censoring for that and won't take risks.. I have borrowed tips about pacing from my friend with CfS.
thanks for this JJ. it is a little understood after effect. I have been encouraged by others accounts of it on this forum and elsewhere. it seems, like stroke itself it is different for each survivor but almost universal for survivors. I have had brief respite from it but it is a pervasive experience. episodes can last anything from a couple of days to a couple of weeks. I have got to the stage of accepting a general background haziness as my new normal. I rarely feel anything like energetic. but the daily haziness is tolerable but not enjoyable, but allows me to do things if I push myself a little. my family fortunately understand it and give me plenty of space. I am in an episode just now and have got through a few engagements and appointments successfully. I now have a few days clear and I am going to retreat and rest fortunately when it is not too heavy I can read and doze. so I am looking for a big fat book to lose myself in. when it is too heavy I can't even sleep. my friend with chronic fatigue syndrome calls this unrest. which is about right.
thanks for sharing your experience of this little understood post stroke experience.
thanks for sharing this. fatigue is not at all well understood I have learned most about it from other stroke survivors. it is difficult for others to understand it. especially when it continues long after the event. I suppose the emotional stress trigger is not surprising since emotional stress requires a lot of brain activity, and for an injured brain that can be a challenge. it is just good to know that others understand, because it can be quite debilitating and frustrating.