When it really starts to bug to you 🐛

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georgieb71
georgieb71 Member Posts: 1
edited 28. Nov 2023, 14:09 in Living with arthritis

I've had ra for 20 + years. I was diagnosed at 30. I've been lucky so far, treatment worked very well the first ten years. I've had a few very bad but shortish flares and stopped working 5 years ago. I've still been able to potter about though and do some nice things. The last few years have been a bit yucky. I've tried and failed on 3 new drugs and have been through most of them now. I've spent a lot of time on steroids. As I become more disabled I keep thinking 'am I just being lazy now? Has my pain tolerance dropped? I don't know how I'm going to handle this next phase. For example, when do you start using wheels??? It feels a bit like giving up 😬. All thoughts gratefully received xx

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  • Ellen
    Ellen Moderator Posts: 1,679
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    Good Morning @georgieb71

    You have had a tough time trying to find medication which works. You'll know better than most that finding the right treatment is very much an individual thing, but you have been very unlucky, but are absolutely not being lazy!

    As for using wheels many of our members here use them it can help so much. You need to see it not so much as giving up more like enabling yourself to keep going. With the aid of your wheels you will be able to do more, join in activities more and live a fuller life.

    Have you considered speaking to a physiotherapist for advice regarding your mobility issues? In many areas it's possible to self refer these days.

    Finally before I leave you to talk to our members I am giving you a link to some information about mental health as you tagged it in your post:

    I hope you'll decide to keep posting Georgie.

    Best wishes

    Ellen.

  • Sheelee
    Sheelee Member Posts: 153
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    Hi georgieb71,

    You sound just like me. Never allowed a rough day without 1st asking yourself if you are being mardy!!

    Our tolerance levels vary day by day anyway, as do our energy levels. I didn't want to give in to a mobility scooter. I don't at home, but I do when on holiday. I got fed up of walking the same 200 metres and never getting any further, as the pain level was too great.

    Why not judge the things you mention against what you would miss in life? I suddenly could explore as a tourist, in a way I never could for years. Transformed what I got from my holidays.

    I don't give in to the pain generally, but I've decided I'm not going to miss out on life either.

    It sounds like your life is hard enough. Try balancing the need for a healthy amount of exercise with the need to also be able to get enjoyment from those things that give you a boost. Looking after our mental health is also important for managing pain. Stress is known to reduce our tolerance levels generally.

    Thinking of you,

    Sheelee xx

  • stickywicket
    stickywicket Member Posts: 27,725
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    I'm sure you're not 'being lazy', just being worried about your ability to cope with whatever the future throws at you.

    Personally, I think I'd want a chat with my rheumatologist to see if there aren't some new meds, or combinations of old ones, that might be tried.

    Next, I wouldn't want to confuse giving in and enabling. I remember, years back, when I first had to acknowledge I really was disabled. It was as if I'd found myself on a different shore. But accepting it, and using whatever I needed to make things possible, made a massive difference. Now I don't think twice about it. I use what's necessary and enjoy life.

    Go for it and you enjoy life too😁

    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright