I just want to moan i think??
I am sitting at work trying to be positive but I am just so tired and nobody really understand what I mean when i say its not like normal ‘feeling tired’
I don’t stop, I keep busy, whether its working, allotments, dog walking or just socialising but I over did it last Saturday at a music event (Walking not drinking) and I just have not recovered and what’s more shocking to me is I feel as if as the weeks go on, I have got worse!.
Painful legs (massive cramp in the left calf Wednesday and still in pain) (oops, almost left the m out of cramp then, that would have made you wonder???) heavy arms, feel sick, head ache (which is not that unusual) and just feel so, so tired!.
I know nothing can be done but as i said, I just wanted to moan.
Jason
Hi Jason
What you’re describing sounds like typical MS fatigue. It sounds like you’re doing too much. If you have real deep down fatigue you can’t just keep busy and carry on, sometimes you have to rest in order to be able to function.
Have you looked into fatigue management techniques? Have a look at the MS Trust info: Fatigue | MS Trust
Sue
Thanks Sue
Good read, it is fatigue but isn’t it just so bloody frustrating!!
Thanks for the link though, i wish I could get people around me to read it or even my head of HR who seams to think that MS is the same as ME and when i pointed out that I get fatigue she suggested I went to bed earlier!
You got to laugh or you would just cry!!
Thanks again
Jason,
yep massively frustrating, I remember when ME was known as “Yuppy flu” and I along with many others thought, “what cobblers, pull yourself together, we all get tired” Now I have matured a bit and had to cope with fatigue I feel very guilty that I was so dismissive of something I did not understand. I have to thank my MS for helping me to be a bit more considerate before jumping to conclusions.
In order to try and manage my energy and reduce the incidence of fatigue, I try to do “one day on followed by one day off” and if circumstances dictate 2 or more “On” days to be smart at allowing suitable recovery / recharge time. Not always easy or possible but don’t be afraid to be kind to yourself and to say “No” or “Not yet”
One other pet nugget is “Do not waste too much valuable energy by being angry or frustrated”
All the best and good luck.
Mick
I agree, I have learnt to embrace the off days rather than be upset about it. I arm myself with computer stuff, books, music and tell everyone that today is a rest day and if anyone thinks I am going to be doing anything today they are mistaken, but I will probably be able to burst into action tomorrow. It is quite a hard learning curve but the benefits are way better than feeling like you are dragging a tyre up a hill on a piece of string all the time.
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Have you tried any medication for the fatigue? I’m on amantadine and whilst fatigue is still a big issue, I feel the medication has made enough of a difference to give me a better quality of daily life
Hiya Jason
I’ve found as my MS has progressed the fatigue has become more of an issue!
Need to have complete breaks and need to take more naps throughout the day.
But it did take it’s toll and I’ve now retired!
If people read the ms leaflets / info on fatigue they do sort of get it but if not they always say yes i’m tired too!
It’s annoying but that’s flipping life with MS.
Sue
the problem when we say we are tired or fatigued is that those around us think it’s the same thing as their tiredness or fatigue – which of course it isn’t.
Perhaps we should say we’re feeling unwell or feeling ill when we are exhausted.
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indeed, I have agreed a whole new lexicon with my wife ranging from “wasted” to “Banjaxed” with the occasional foray into engineering speak with “FUBAR” to represent just how I am feeling. It does not make me feel better but at least I can be confident that she will cut me more slack if I get grumpy.
Mick
Thanks for the feedback. I like the idea of different words for different stages of fatigue! It’s odd but at times I wish people could see how I was feeling, some sort of scale they could look at.
It makes me realise how fortunate I am with my job - i work in medical education and my boss, who is a doctor, is more than happy for me to have a nap when I need one. Sometimes I’ve slept on the sofa in my office for 2 hours whilst the office just worked around me. Fortunately all around me have a good understanding of MS
Lulu
When I was still working, I can remember crying on the drive in as I felt so fatigued. All I wanted to do was to climb back into bed and sleep forever. I did describe what fatigue felt like to my colleagues but, if my tiredness resulted in them having to work harder, then the sympathy levels were limited. It’s only human I suppose.
Now that I’m ill health retired it’s much easier to cope. I resisted giving up work for years. I battled with my employer about reasonable adjustments and made the last couple of years hell on earth to be honest. But I love being free now. I can sleep for a day Or two when needed to catch up. I usually spend 2/3 of the day active and 1/3 sleeping or resting (as well as a nights sleep of course). I’ve adjusted my expectations…nothing is ever too urgent, cleaning and other tiring and boring jobs can wait or be done gradually over time.
I did did have a huge wake up call in 2012…severe heart failure. I also had a bad relapse and 10 anaphylactic shocks all in the same 5 months. Sad and frightening times for me and my family. Makes u realise how precious life is. I was given a few months, then 2 yrs and now I don’t know …I’m hoping 10 …as the meds r doing the trick. I have a familial heart condition called dilated cardiomyopathy which, basically, makes my heart muscle go all big and baggy.
So, I live for today, fit in as much loveliness as I can, enjoy the people I love and I certainly have learnt to live with this flaming fatigue (which is caused by the MS and DCM …double whammy!)
when I describe the fatigue to people …I say I’m SO tired that I want to weep. That usually shocks them. They don’t usually understand it’s not just about physical effort but also mental effort, information overload and socialising is totally draining.
Take care and slow down…pace yourself and lower your expectations. Rest is the only answer. U can’t simply carry on…it will get u in the end!
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Jason i resonate completely with you. I am feeling absiolutely horrific just now, no life about me at all, and on steroids for a relapse (numb toes). Nobody seems to understand when you sleep and sleep and sleep why you dont just feel better, even my boyfriend tells me that sleeping is making it worse, and taht i will always feel worse if i continually go back to bed and sleep, even though to stay up and awake is painful. Its the hardest thing people not understanding you- makes it a very lonely place this MS thing!
Sd
Thank you everyone for your comments and ideas. I am not on any meds for it and to be honest i didn’t know there where any. but i would like to avoid looking that way until I really cannot cope.
I know that I am lucky and that I am noway nearly as bad as I could be but I just found it shocking to feel so low after the event I helped to run and the fact that its taken me over a week to start to feel back to normal is, if I am being truthful, frightening. Yes I get fatigue and yes at time I have to stop what I am doing and rest but these times tend to be over the weekend, typically, after a hard week at work. This time, however, I pushed far too hard and the result was miserable and at times painful.
However, on a positive note, today is sunny and really hot (sitting in a non air-conditioned sun facing office) but i am thankful that I am feeling brighter and hopefully the heat is not too bad for others so that we all can enjoy it!