Tags: acceptance, aches, arthritis, flare, flare-up, joint pain, knee, neck pain, normality, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, stiffness, tiredness
I’ve been thinking a lot lately (although writing very little!) about what ‘acceptance’ of RA means, and also about redefining my idea of ‘normal’. I hadn’t managed, and still haven’t managed in fact, to get my thoughts into words, but I think this afternoon I came as close to ‘acceptance’ as perhaps I ever will.
As I was relaxing in the bath (sorry, probably ‘too much information, especially for those that know me!) and letting my thoughts drift along pretty randomly, I started to think about some of my friends and colleagues: one’s still coping with the aftermath of the Japanese earthquake; one’s recently widowed; one’s, to put it bluntly, losing her marbles; one’s spending this weekend picking up the pieces in her house, since large swathes of the downstairs flooring were dug up on Friday to find a leak.
Good grief, I thought – I’m bloody lucky! I have a loving (and all-round fab) husband, a terrific family (especially the nearest and dearest, including the recent addition of Mrs Mooseface), I have great friends, I enjoy my job, I have time (never enough time of course, but some time) to indulge my passions of messing around with textiles, drawing and pottering about in bits of nature, and although one could always be better off financially, the finances aren’t a complete disaster! The interesting point is that at no point during these thoughts floating over the bubbles did I consider, ‘Yes, but I do have this bloody disease to deal with, so perhaps not so lucky after all.’
It’s not as though things are going great with the RA at the moment either. I wake up every morning in pain, although it often clears for the most part within the hour. I go to sleep most nights in pain. I have pain and stiffness during every day. This is perhaps extra frustrating because for around four months between a flare in March and sometime around August, I felt as though I was pretty much fine, almost symptom free, nearly in remission. And yet, in a way, this on-and-off low-grade (for the most part) pain has just become the norm for me. It’s just another thing to put on one side and live with – and yes, I do appreciate I’m lucky that I can put it on one side at the moment, it’s not so bad that it stops me doing all those things I consider myself lucky for, but what interested me was the fact that it was so far into the normal, everyday that I didn’t even give it a thought when considering other people’s problems and drifting into comparing my life to theirs.
I think I might have once ranted that I will never ‘accept’ this disease, and don’t even mention the word ‘embrace’ in the same breath as rheumatoid arthritis, but perhaps this is acceptance, Penguin-style.
Is that an oxymoron? I think it might be!
Anyway, the folk over at IAAM have asked us to write about the onset of our RA, so here goes.
Well … erm … actually … I don’t really know when it started. I know when I got diagnosed, but that’s not entirely the same thing. I was 39 and my general health was fairly ‘carp’ at the time: I had fibroids which were giving me terrible problems, and I felt tired all the time, and sometimes when I got up in the morning I felt like I’d been running a marathon in the night. However, given my usual sleep patterns, hubby suggested I probably had! The thing is that even before that, for years and years and years, I’d had periods of feeling ‘generally carp’ – tiredness, achyness, and years of sinusitis culminating in a sinus operation in 2005 which actually didn’t do much good. Interestingly, since I’ve been permanently on anti-inflamatories for the RA, the sinuses are much better than they used to be … but that’s another story.
I really enjoy country walks too, and I had been getting pains in my feet that would last and last after the walk was finished. People always talk about ‘taking the weight off your feet’ and it was only when I finally got RA treatment that I realised what they meant. The phrase used to puzzle me because I would sit down and they would STILL hurt for hours. I thought that was the same for everyone. It’s only now that I realise that that was part of the whole RA thing. Now, in a good phase, if I walk for ages and get a slight ache in my feet, I sit down and it goes away. (Of course in a bad phase they just hurt most of the time, but ce la vie!)
I was just living with all this, and having a moan to friends and hubby now and again, but since I’d had this going on for years, and since I’d seen a specialist in around 2001, who’d told me I was depressed, which couldn’t have been further from the truth, I’d given up on doctors!
But then I started getting these pains in my wrists. Now THAT was something to go to the doctor about – I run a small business doing transcriptions, and transcriptions are, when you get down to the basics, typing, and typing is something you can’t do so well when your wrists hurt all the time. I was also getting intermittent tingling in my fingers. I was worried it was Carpel Tunnel Syndrome and thinking I couldn’t afford time off to have the op!
So I went to the doctor, and saw a wonderful GP, who sadly didn’t stay at our surgery more than a few months, who investigated carefully and said she needed to know which fingers I was having problems with. I said I wasn’t sure! Sounds dumb, doesn’t it, but I actually had to go away and come back when I’d worked out which fingers it was! Turned out that it was the wrong fingers for carpel tunnel but the right fingers, potentially, for RA. I think I was incredibly lucky that the doc actually thought of this, probably because she was fresh out of college. I didn’t have any very obvious swelling or redness, although I did have tenderness, and I think similar stuff had been missed before e.g. in 2001!
So she said, ‘It’s probably not RA, but worth checking’ and I had it checked … and to cut a long story short, it was … obviously, or I wouldn’t be writing this blog!! Once she’d started the ball rolling thing went fairly smoothly and I was soon on treatment, although it took another year to get back on a fairly even keel because I started on hydroxychloroquine and it didn’t do it for me, but I had to try it for three months to make sure, then increase the dose for another three months, then try MTX low dose for three months, then increase that … and finally … BINGO! Much better Penguin!
I still have flairs, and I still have days where I feel like I’ve run a marathon in my sleep, but they’re far fewer than they used to be.
As to weight, apparently there’s debate raging in the US at the moment about whether RA causes obesity. For more on this, which was all news to me, see Amanda’s blog, All Flared Up, where she’s flaring up against ‘Dr Phil’ who’s someone else I hadn’t heard of!
Well, I can say for certain that I wasn’t clinically obese when I got diagnosed, although I was overweight, and have been almost all my life! I know quite a number of people with RA and the vast majority of them (with one exception I can think of) have been slim to skinny! Certainly in our local Norfolk RA group I definitely felt I was the fatty! One lady said, when I mentioned it, ‘You wait till you go on the MTX, I was bigger than you and look at me now!’ She was beautifully slip. Oh goody I thought, a useful side-effect of MTX! But alas, it hasn’t done it for me!😉
Sorry, this is a bit of a ramble but I’m in a rush because I was so sure yesterday that the 12th (World Arthritis Day) was Thursday, and I was going to write this blog tonight for posting tomorrow! Oops!