One of the hardest things about being longer term ill, is adapting to the new limitations. It may feel like giving up. It may seem like you’re accepting that some things are gone forever, and that can hurt. But the thing about illness is that it won’t be cowed, or impressed by you fighting to hold onto your old life. It may well bite your arse for that.
I’m wary of positivity, as it can do far more harm than good. But, when it comes to adapting, a somewhat positive outlook can help. Look at what you can keep, rather than what you have to let go. See your adaptations as ways of safeguarding your health and maximising your options for the future. You may have losses to grieve, but at the same time focus as much as you can on what is still possible, and make the best of it. Adapting to limitations is not a happy process, but trying to find the positives can help a lot with coping. Fending off despair is also important, because that just robs you of more options and gives nothing in return.
The last ten years or so have not been a smooth decline for me. I can’t walk as far as I used to – that’s been a dramatic shift in the last year. Shoulder damage means I can’t swim, or lift much. I am however sleeping better and this means late nights take less of a toll so I have more scope for events and a social life than I used to have.
Having got the right kit in place, the massive problems my poor circulation used to cause are now minor problems. I’m in a lot less pain as a consequence. Using hand supports during work, I get less pain and inflammation. I’ve had to give up on musical instruments, but I can still write, sew, knit, colour things – I’ve kept more than I’ve lost.
I rest more. This means I work more efficiently – I may be getting more done and more effectively at this point than I was five or ten years ago, because I think more about how to use my energy and I take more breaks. This has also helped with my mental health. Everything I’ve done to better handle my bodily limitations has also improved my mental health, or at least stopped it becoming any worse.
The last year or so has been really tough, and I’ve done a lot of trying to understand why. Some of this I might be able to fix, or at least manage better. Some of it might be a new normal – I don’t know yet. What I do know is that the best thing I can do is figure out how to live within my limits. The more well I can be, the more options I have. Pushing to hold on to what I used to do is likely to make me more ill and take even more from me than I might otherwise lose. So, I have a constant fettling process about what I eat, how and when I rest, how and when I move, how I support my sleep…
(Also, this isn’t a request for advice. All of the specific details about what I’m dealing with are deliberately absent from this post. If you don’t know me well enough to know about the various things I am dealing with, you don’t know me well enough to have much of a shot at offering unsolicited advice. Thank you)