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How do you deal with people who don't understand about exercise intolerance?

Posted , 6 users are following.

Sleepysheepy
Sleepysheepy

I'm 33 and currently a few weeks into a major relapse after having Shingles at Easter. I've had ME amongst other diagnoses since having post viral syndrome from glandular fever 10 years ago. I've had ups and downs and had just about been keeping afloat lately until shingles attacked. It's so very clear that my ME is post viral in origin. I have autoimmune hypothyroidism and positive anti nuclear antibodies which suggests immune dysfunction although I don't meet enough criteria for lupus.

I'm finding it so hard to deal with people who are close to me judging how I'm handling my current phase of being more or less bed bound due to profound fatigue, dizziness and pain. It's been three years since I was bed bound for weeks in a row so they've kind of forgotten what it was like/is like. My husband has been very supportive over the years but on occasions he just doesn't think about what he's saying. He's openly agreed ME is physical and has pathologic origins but when I'm like this he makes the odd stab about me not doing anything to build/keep my stamina and says I should exercise i.e. swim etc and take control of it. Those of you who know how I feel will know how utterly impossible this is! Just now I was saying how frustrated I am about being unable to do anything, and the inevitable consequence of gaining weight and becoming even more out of condition, and his response was "well you know what to do - get out and do some exercise so you get fitter". I took this so personally like he was accusing me of being lazy, I just hid away and cried my eyes out. Every time someone says something like this I just fall to pieces, like all the work I have to do to convince myself that my weird illness isn't my fault and is real just goes out the window. It's like being stabbed in the guts.

So I wondered, how do others cope with this kind of comment or how should I respond? I have over the years lost many of my friends, as if they've made these sort of comments, I've just decided that it's not worth the energy in keeping them. But my husband is obviously the most important person in my world and I so want to help him understand what it's like to be me so that we can get through this together.

I did give GET a go a few years ago and as others have found, it was futile, I couldn't keep up with the schedule and it made me worse. The people administering it were quite frankly offensive and demeaning. He knows this. What's more, when I had shingles I didn't immediately assume it was going to cause me to relapse, I was a positive as I could be, and I did work hard not to give in completely and I didn't just take to my bed then. I tried to very steadily keep doing little bits about the house etc. (pacing myself gently) hoping it was the right thing to do. I managed like that for 3 or 4 weeks, and hoped then I would be ok and able to begin to work back up to what I had been able to do, but I couldn't and now I feel more ill than I did when I actually had the rash etc.!

Anyone else had a relapse after shingles or something similar?

Any tips on how to hopefully minimise the amount of time I'm stuck in bed for?

Thanks so much in advance.

1 like, 4 replies

4 Replies

  • elaine62759
    elaine62759 Sleepysheepy

    Posted

    Hi - my M.E. was triggered by glandular fever too. Worst relapse I had was when I lost my job and ended up in bed again. Took me a few months to manage to get up and about again. I would advise to keep going as you are, lots of rest and very gradually increase what you do in a day but listen to your body as some days might be better than others. I've had loads of comments over the years about exercise too like 'why don't you join a gym' and 'why don't you just get yourself fitter' but it's really difficult to explain it to someone who doesn't have M.E. as they don't understand. My husband used to suggest things like going for a walk and pushing myself to do more when I was first ill but he's seen me crawling upstairs on all fours like a dog when I don't have the strength in my legs to get up them and going pure white and looking drained when I've done too much so I think he understands better now. The only exercise I can do is walking and gentle yoga but only when my body lets me. I tried GET too and it made me worse. You could maybe show your husband some of the comments on this forum and he might see that other people have the same problem with exercise which might make him understand it a bit better. Good luck with your recovery!
  • Jk1952
    Jk1952 Sleepysheepy

    Posted

    Hi, just read your message. I know it's frustrating when loved ones don't/can't understand. They would if we looked as bad as we feel, ( but who wants to look like that?!) I find that the best thing is to just forgive them;  it takes less energy than getting upset. Hah! When I have a relapse I use toning chairs. The chairs do the work for you and you manage to keep your muscle tone whilst you're unable to exercise. My local council helps out with a discount if your doctor kindly refers you. Hope this helps.

    regards.

  • artistmike
    artistmike Sleepysheepy

    Posted

    I think that hardest thing I have learned with the ME is that if people don't understand what I'm going through, then that's their problem, not mine. If anyone is going to be involved with me they had better find out enough about what this illness is really all about so they don't make crass and unhelpful commnets that add to my stress.

    You've had the illness a long time and although you say that your husband has been 'very supportive' it's obvious that he hasn't really grasped what having this illness involves if he's making comments like " get out and do some exercise so you get fitter " It only take a rudimentary grasp of ME to know that is a ridiculous thing to come out with.

    For a sufferer, ME/CFS is long term, very hard to cope with and extremely disabling, compared with which, losing an arm or a leg, is an inconvenience. People with those sorts of disabilities are often well, fit, exercise and able to work at on or about their pre disability levels, unlike us who have our lives brought to a complete standstill.

    If your husband cares about you, as much as he does himself, it's about time he made the effort to understand and adjust his life to your problems 100% and not half-heartedly. If he really believes the sorts of statements he's making, he hasn't the faintest idea what you're going through.

    You don't have to appologise for being as ill as you are, and you need to tell people that want to be around you to get a grip and make a small effort to educate themselves as to just how bad ME is. 

    You're a victim of the ME, don't be a victim of people's ignorance as well. You have to live your life your way, the way that gives you the best quality of life you can possibly achieve, not living it for for their convenience....

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