So this might be an odd question but i hope im not the only one who ever does this lol So when im doing something with my day like working, cleaning, walking the dogs etc (well anything really) it takes so much effort and i feel awful and just want to get in bed. But then when i do absolutely nothing all day (not that we have that luxury very ofter) i feel ok. Well i have one or two snags but not as bas. I had a bit of a bad spell a month or so ago and everything got a bit too much so i have been of sick sinse. I have been off about 5 weeka and i have literally done nothing everyday. Now i feel really good compared to my baseline when im doing thing and i keep (wishful) thinking im actually better than i am. Does anyone else lurse into this false sense of reality? Is it normal to be worse/better when busy/doing nothing? Hope that makes sense
Your definitely not alone darlin, it’s what I hate about this disease.
If7 you want help in work see Get support in work if you have a disability or health condition (Access to Work) - GOV.UK taxis to and from; you only pay bus fare; loads of other benefits.
Do not try and fight being lethargic; as you say it will go then you’ll be able to get on with life.
Hi George, Thank you for your reply and the very useful link i will have a good read through it. It is probably my least favourite part. When i am resting the pain and fatihie subsides and i convince myself maybe i am actually ok. But i know deep down that it is only temporary while i am resting and will return when i do things. But just for that short time i like to pretend. Thank you for assuring me im not the only one
I know what you mean, so tired that it is hard work holding yourself up. However I also can feel rough if I stay in bed too much.
It is all a bit chaotic inconsistent and random, I wish I could predict when not resting is right for me things would be a bit easier.
I hope you find the best strategy to cope with variable energy levels.
you’re certainly not alone and what you have described is very familiar. Over the years, I’ve learned the hard way that in any MS battles, MS always wins. When fatigue is at it worst, I do as little as possible and pretty much let it run it course and I feel the better for it. However, as Mick has indicated, sometimes the randomness can be baffling.
Hi i note you have been off work sick for 5 weeks, I am sure there are some good employers out there and hopefully yours is one of them? If not you may want to be aware of the equality act and the fact if you have Ms You are automatically classed as disabled under that act and they do have certain responsibilities under that. Ollie
Same here with the exhaustion, although my nurse says I manage it better now. I have a day when I do things even if it is as you said, hoovering or tidying. If it is really bad and I feel like gravity is pulling me down, it is a sign to stop and watch tv or lie down reading. If I have a day when I wake up and feel ok, I take a small walk or drive to the garden centre something like that (not exactly rock and roll) but then the next day I try to relax, eat good food and rest. It has taken me some years to realise that the rest part means rest and not arsing about doing stuff. Every time I get up, fiddle about with something, do something else, it is not resting. So now on those days, I am prepared with books, things around me, horrid over-ready meals or things that I don’t have to grapple with and not open. I have netflix favourites that I keep for these days and I also have a radio next to my bed and music on my phone. I have also on the tired days but feeling well (yes I have some of those too when I get up and don’t look so grey) that I organise things. Draws, cupboards, making sure all paperwork is up to date etc. I know it sounds trivial but my bungalow is a nicer place to be and also when the brain fog descends like the black fug, I know I am up to date with things. Then, especially in the winter, when I tend to be a lot worse, I can rest for a long time or sleep without worrying about bills, papers, renewals etc.
Occasionally, I think because I have managed do get better at this and less doing daft things, I wake up and have - a good day! Few and far between but it is like the pay-off for being ‘a good girl’ and not keep doing.
Fresh air is my key, if I don’t step foot in the air at least several times a day I get a bit stir-crazy, even if it is in the middle of the night. So my thing for sanity and staying on top, is fresh air, breathing big breaths, mindfullness thoughts and trying not to get bogged down with M.S. ruining my day. The other thing I have learnt with the tiredness when it makes you feel sick and don’t eat properly for a few days, is that you can go ‘over the time’ for eating and feel like you just don’t want anything at all for a long time. If I reach this point, I drive to the pub round the corner for a lunch. If it is put there without the getting it ready, sometimes it makes the difference between wanting to eat and not wanting to eat. I usually can’t finish it but I have eaten, enjoyed it, then can go back to bed!