Just wondering how people cope with extreme tiredness . Most of the time my Parkinsons is well controlled but I have spells when I'm absolutely exhausted. Last Tuesday I had a busy day but I'm still really tired, feel like I want to sleep all day, my arms and legs feel weak. I'm sleeping ok and taking it easy but cant shake the tiredness off. Most of the time I feel ok but do seem to be having more of these tired periods. I'm wondering if an increase in medication might help although my mobility is still quite good. Any advice would be appreciated.
Tiredness is one of my worst symptoms. I am extremely exhausted all of the time. I get the nodding tiredness where I have to fight to stay awake. I regularly wake up at 4am too. It is awful.
Strategies? One of the major things I catch myself doing is reacting to the tiredness by doing more and more things and jamming as much into my day as possible. I am scared of being useless (see my blog post http://dialoguewithdisability.blogspot.co.uk/2013/01/parkinson-tiredness-and-fear-of-being.html). I find it helps to plan ahead. If you have a busy day, have a rest day the next day.
My tiredness can creep up on me. This is especially true when my medication is working well; I push things a bit more and then pay the price. Its about negotiating with yourself I think; is this activity worth the effort and the price I will pay? I find an increase in my medication increases the tiredness (again, possibly because it allows me to be more active and use up more energy).
As with the rest of this disease there is no silver bullet. It is just about doing the best you can
Good luck with it
Thanks very much, Dr Jonny. I know what you mean about not wanting to feel useless, I'm very much like that too and perhaps try to do too much. Its frustrating when physically I can do things but tiredness prevents me. Its a tiredness I've never experienced before, sometimes I can relate it to doing too much, other times it comes on for no apparent reason. I guess its the nature of the beast.
I also get extremely tired. I recently had my school friends up to stay, so a late night followed by an early morning. It took me three days to get my body back to its "normal" condition.
Late nights really knock the stuffing out of me, but the alternative is no social life, so I guess its worth the pain. I am not ready to give in to this rotten disease just yet.