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ME/ fibromyalgia

FelixHenson Community member Posts: 2 Listener
So I've been really struggling for the past 9 months - very quickly bedbound, unable to prepare food so need a carer, in constant pain, needing mobility aids - and it had been suggested I might have ME but never formally diagnosed. ME has a small chance of recovery so a part of me thought maybe I won't have to deal with this forever. But now I've been diagnosed, I know that fibro is forever and I'm feeling very hopeless about life like this. I don't know how I can be happy like this. How do other people cope? What things could I do and enjoy that aren't too tasking?


  • Emma Hogg
    Emma Hogg Community member Posts: 1 Listener
    I was originally diagnosed with this although I'm now back on the undiagnosed trail but looking like mitochondrial disease. But i understand what your going through as my condition originally presented as fibro/ME.
    Stay positive, its all about finding new things and not focusing on the things you can't do but the things you can. A big turning point for me was getting an electric wheelchair. Once i got over the idea of it its helped me do things i wouldn't have been able to do.

    Stay positive I have heard plenty of stories on the net of Fibro/ME just disappearing.
  • [Deleted User]
    [Deleted User] Posts: 126 Listener
    Heyyyyy Felix :)

    Have you been in touch with the fibromyalgia soc? They have a forum. It might be worth cross-posting your message there too to see what experiences their users can share with you


    -B xx

  • PercyP
    PercyP Community member Posts: 1 Listener
    Hi Felix,
    I was diagnosed with ME 15 years ago. It is a massive lifestyle adjustment and I'd be lying if I said it was easy. My life is very different to how I thought it would be but I am happy and I appreciate things more becuase I know how precious everything is. I am now a lot better than I was when I was first diagnosed. At my worst, I was housebound and in a lot of pain. I now work 4 days a week. It's taken me 15 years to get this far and I still have a long way to go but I will hopefully continue to make progress, even if very slowly.

    The main thing that helped me was a big shift in my thinking. I wanted to get better and I realised the only way to do this was to take a step back, go easy on myself and take things as slowly as I needed. I found my ME to be linked strongly to stress - so removing as much stress as possible from my life and trying to not get emotionally stressed out by the ME helped. I then slowly (v slowly) started to reintroduce myself to 'normal' life as I felt able to do this. I'm naturally very ambitious so it was challenging to hold myself back until my health was ready for the next step. I didn't like the boom-bust cycle that a lot of people get into where they overdo it and then crash. I found this very unsettling. I decided to look at the long-term picture. Like the hare and the tortoise. Slow and steady wins the race.

    The best advise I had was to listen to your body and trust yourself. And don't be too hard on yourself, you're going through a lot.

    In terms of tasks or things you could do, would something like a Community Champion on this forum interest you to help and chat to others? There are volunteer roles advertised at the moment (I've just seen them and considering myself). It's something you can do when you feel up to it. My favourite hobby.....sleeping!

    There's a lot of cope with with ME but I've learnt a lot too. My problem solving skills are excellent - having to figure out how I can do things and, like you, what things I could do for enjoyment which wouldn't severely impact on my health.

    I hope this has helped you a little. What you are going through is a massive life change. It will take time to adjust and come to terms with it. Do consider speaking to someone about this to help you through it and help you process what you're dealing with.

    All the best,
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