my brother has recently been diagosed and has never been the most motivated of people, he has been told to rest and not try and push through the tiredness but listen to his body- what are the consequences if he doesnt ‘listen to his body’ thanks for any advice!
Hi Wits End, in my experience the more you push through and fight the fatigue the worse it gets.
It does though take ages to learn to deal with fatigue and any other MS symptoms. He’ll learn slowly to understand how MS affects his body.
The only consequence will be that he’ll get more tired… and he won’t be able to push through any more. He’ll soon learn that if he over-does it one day he’ll pay for it the next (or later the same day).
Support him in how he wants to handle it… your support is the most important thing.
I agree with Pat. I don’t think there are any dangerous or long-term consequences (some people believe it can trigger a relapse, but I’ve never found that to be the case).
I think the most likely outcome will be that he just feels worse. Again, as Pat says, it is possible to “borrow” against tomorrow. When you get used to it, you can plan to have a day that you expect will be a bit too much (but it’s something you really want to do…) if you factor in that you might need to spend the following day in bed to recover.
Do give some thought to the possibility your bro’ might have had MS for quite some before diagnosis, and that could account for his seeming lack of motivation in the past. I spent years beating myself up for what I believed was laziness and lack of ambition, before ultimately discovering I was ill. Unfortunately, with current techniques, it’s not possible to determine accurately how long you may have had it, but in my case I believe it was certainly years, and possibly decades. I wonder if my personality would have seemed very different, if I hadn’t been unwittingly struggling with illness
When I was first told I had a CIS, I was told to carry on as normal as I may never have another incident or it could be ‘6 months, a year or even 5 years’ before anything else happened. So, I went back to pushing through the fatigue and not sitting down in the afternoons because I knew I would fall asleep and I felt that, in my early 40’s, I was too young to be having an afternoon nap. Within 3 months I was back in hospital with a very disabling relapse, numb from the waist down and barely able to walk.
Now, when I need to rest I do. The exception was this year in February half term (I work at a school so my life is dictated by terms) when I knew I was exhausted but I also knew the overgrown shrubs in my garden needed tackling. I did indeed cut back three of them which was very physical work and I needed a sleep immediately afterwards. In March I had another relapse, admittedly not as bad as the one 4 years ago probably due to the fact I’m on Rebif now.
I think I can safely say that if I overdo things very badly I do have a relapse. I get away with overdoing things a little as long as I rest up for a few days but if I overdo things a lot or long term then I relapse. Simples!!
I have never felt like I had a choice about ‘pushing through’ tiredness - I just had to lie down on the sofa, I had no other choice. I have now been on Modafinil for a week (I know, probably a bit early to be drawing any firm conclusions about its effects) and I am seeing a huge difference in how much I can do without being exhausted. It is absolutely brilliant. If your brother wants to try it, he needs to tell his neuro he suffers from excessive sleepiness - it’s actually a narcolepsy drug so they will only prescribe it for excessive sleeping associated with MS, not for tiredness. A surprising number of people with MS are on it and now I’ve tried it, I can see why.