Dear Nic
My diagnosis says post stroke tiredness and left sided weakness. Which I guess tells me what I am suffering. The term SF has in fact originated from me, not the medical profession.
So I get a kick out of so many of us using the term. The data showed 65% suffer post stroke triedness but all the regulation type strokes seem to have it. So I dont know where the 35% have gone.
On the old forum I instigated a section "what does your SF feel like" and we all described slightly different things. My favourite was "feels like my head is in the washing machine". Many suggested fog, mist or stickyness.
I do get concerned that I give loads of "advice" which is purely my experience. I have no medical qualification at all. And I dont like to overwhelm SS with all that might follow when they need to get through the early stages first. Then there is a separate consideration for the carers. Again, I dont want to overwhelm with tales of possible woe, yet some forewarning is probably helpful.
On the old forum nearly all were the actual survivors and very few were carers or family. I fear that the new forum is just too much for recent SS to handle. No way could I deal with this site in my first year, had it been in operation.
With the huge incidence of ME sufferers maybe SF will start to be considered.
I went through years of concern as to whether I should deal with my physical disability or my mental disability. I couldnt cope with both at once. And I now wonder if my attention to my own SF is in fact part of the problem. There is so much to learn.
The follow up for us SS is hopeless. The NHS is being squweezed so hard and the requirements of an SS are so lengthy.
I do often think we are the poor relations. Then again, I have escaped quite lightly (well I think I have).
I can tell sleepy tired from stroke tired. I can also tell what is memory loss from stroke as opposed to ageing. Havent had anyone else who can feel the difference. I struggle so much with SF. How do others cope when its mixed in with sleepy tired.
I have enjoyed a few precious hours when the SF lifted. There is something in my head thats not right. I want to get my hands inside my bain and lift the fog. Still hoping it will lift sometime.
Another massive decision is when or if we stop looking for medical treatment and start living the best we can with what we have got. I have opted to live the best I can. Not at all convinced I am right. But thats what I have chosen. Its surprising how much discomfort can be pushed to the back of ones mind.
Today is a poor day and I have had a long dental session. That was hard. The drive was hard and being sensible for the dentist/nurse was hard. I had only recently visited the dentis, three years after the last appointment. I couldnt travel so I have a new dentist. Its all hassle when I just want to crawl away and rest.
So much to learn. Should the medical staff add the impossible SF added to it ??
Best wshes
Colin