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.
Tags: pain, paracetamol, RA
The eight-year-old sense of humour is as strange and wondrous thing. I remember thinking, ‘Where’s the paracetamol?’ ‘The parrots ate ‘em all’ was absolutely hilarious, back in the day. It’s not quite so funny when you find you’re living on the darned things though, especially when all of a sudden you go to your paracetamol stash and find that the parrots do indeed appear to have eaten them all!
I’m having a bit of a flare (fizzle, flare-ette, floret?) this week – not what I needed the first week back from hols, but heck, it’s not what we need any time, is it? It doesn’t help that I have a slight cold on top of it, so I’m bunged up and headachy too, and I’m definitely having the maximum number of paracetamol allowed every day, which is why, although I tend to buy some every time I’m in a chemist or super market, just in case, I went to my paracetamol stash today and found the cupboard was bare!
They do nothing at all for inflammation and swelling, but I’m already taking everything I can for that side of things and they really DO help with the pain!
Thank goodness I’m the world’s untidiest penguin – and I was able to rummage some up from behind my bedside table, in my handbag, in my lunch bag … and now I come to think of it there might be a couple in my toilet bag! Still, another trip to the chemist is required tomorrow I think! Annoyingly I was there only yesterday but, for the first time in ages, completely forget to buy any paracetamol!
Off to take the bedside table stash and go zzzzz…..
Tags: embroiderers guild, hands, RA, Rheumatoid arthritis, silk, spinning, wool, yarnscape
I said in my last post that I’d post about the spinning day, so here we go!
I had a grand day out on Saturday – as previously mentioned a friend and I (and nine other ladies) had a ‘Spinning with a Drop Spindle’ workshop with Alison from yarnscape. Like all speakers for our branch of the Embroiderers Guild, poor Alison had to do a talk on the Friday night AND a workshop all day on Saturday. We work ‘em hard! She turned out to be a fascinating and engaging speaker though, and an excellent tutor.
I discovered the whole concept of archao-linguistics at her talk – something I want to find out more about … if I ever have time. Absolutely fascinating. You can trace a technology such as glass-making or weaving around the world, seeing when it was adopted into different cultures etc., because as it’s adopted, a culture wouldn’t have a word for it so would tend to use the word of the culture or person introducing it to them… so you trace the words and the rest follows from there. Cool!
We all had a great (if frustrating) time at the workshop on Saturday. I think learning spinning is inherently frustrating – there were an awful lot of ‘aaaah’s and ‘urrghs’ early on in the day, even though Alison very wisely started us of gently with plying and unplying ready-made yarns and only moved on to fibres later. I think I know why it’s called a ‘drop spindle now – not because you let it dangle as you spin; rather because the dratted thing keeps dropping! Fortunately the groans were followed by more and more happy noises as people finally found they’d got the hang of it … or in my case ALMOST got the hang of it!
I was quite concerned, given the very changeable but fundamentally damp weather we were having, that my RA would play up and make holding the spindle and yarn and fibre (in hands, knees, mouth and any other available appendage!) Thankfully it didn’t, and neither did my friend’s – she’s the one I’ve mentioned before who also has RA but who I actually met on at a quilting group. However, Alison says we need to practice ten minutes a day if we’re ever going to master this (or words to that effect) and my hands are playing up a bit today, so it’ll be interesting to see if it makes things worse or doesn’t make any difference. One good thing is that the spindle itself (this particular one that Alison provided anyway) is very light, and one of the things we spun was silk, which is of course incredibly light, but even a handful or so of wool isn’t exactly back breaking, so I think it might be fine.
I’m sure if things were REALLY swollen it would be completely hopeless but luckily I tend not to get really swollen; just a bit on the achy side now and then … or in fact now! Off to see what effect spinning has … I hope none!
Yup, twenty minutes of spinning, one dropped spindle and two broken threads (over twisting!) later, I can safely say it’s not hurting! In fact I feel slightly better for it!
Tags: aches, coping strategies, RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), stiffness, stress, tiredness, work
Someone just posted a request on tips for coping with RA on the NRAS Healthunlocked site that I mentioned previously, so I thought I’d ‘cross-post’ mine here, although I’ll add to them a bit because I didn’t want to hog the post on that site!
Not saying all these will work for everyone, it’s just what works for me!
- Make sure you take all your tabs and don’t be afraid to use pain relief too! You’re not proving anything by struggling through without paracetamol (or whatever). I also have a wax bath for my hands when I need it, a TENS machine and a front-fastening neck brace. Hardly ever have to use any of them but they’re there if I need them! (So long as I remember I have them!)
- PACE YOURSELF. It’s not good saying, ‘I’m just going to battle through with my usual routine’ because that’ll just make things worse. On the other hand, to stay positive I definitely don’t get into the thought pattern of ‘I mustn’t plan anything in advance, because RA might get in the way.’ Yes, it might, and it often does, but you still have to make plans and have things to look forward to.
- ACCEPT HELP! – but at the same time make sure to stay independent as much as you can. So for instance I make sure I get referrals to physio when I need them and go and nag the doc if I need to. And make sure I don’t turn away offers of help from good friends and colleagues. But at the same time I won’t just sit about and let people run around after me when I feel fine – tempting though it might be sometimes!
- TREAT YOUR FRIENDS RIGHT: I don’t think you can’t spend all the time moaning to your friends or they start thinking, ‘Where’s the Penguin I used to know? I don’t like this one!’ On the other hand, a REAL friend will at least listen when things are really bad, offer to help and MEAN it! If they don’t do that, then perhaps they’re not real friends anyway! They expect the same thing in return of course. If they don’t it then you’re not a real friend either!
- In my case I’m extremely lucky to have a wonderful hubby who, bizarrely, enjoys housework, so that’s one big burden taken away from me! I’d recommend a house-work loving partner to anyone with RA but I guess they’re pretty rare!
- SLEEP! Really make sure that you get enough sleep if you possibly can, and if you need to then try a herbal or a prescription sleeping thing, because getting enough sleep makes everything else better!
I strongly suspect that one could help oneself by being tidy and having a place for everything and everything in its place. This would negate the need to try to kneel down and search under the bed with bad knees, and then find whatever it is isn’t there anyway … However, as I’m the messiest person I know and was doing just that scrabbling under the bed thing only yesterday, I can’t put that in as a personal recommendation really!
Tags: acromoclavicular joint, flare, knee, pain, physical therapy, physio, physiotherapy, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), shoulder, swelling
Well, I’ve had my physio – both knee and shoulder. Woohoo! The physio had no problem working on the knee once she had the doctor’s note!
As anticipated, the ultrasound made the knee a bit worse to start with but then much better! I had the ultrasound Friday morning and by Friday pm the knee was already greatly improved. Of course I SLIGHTLY over-did it on Saturday, but when the local needlework shop is tragically closing down but magically having a 40% off everything sale, what’s a girl to do? So then yes, I paid for it on Sunday. Today the knee is fine again though, having had a rest yesterday.
I also had ultrasound on both acromoclavicular joints (joint between collar bone and … well, not sure which bone really, but see below), even though when I saw the physio on Friday neither were that bad. They continued to be pretty OK really until this morning.
OUCH! Today they’ve been really, really painful, and definitely reduced mobility in the left one, although not dramatically. No good trying a wax bath there either, so I’m wired up to my TENS machine at the moment. Stupidly didn’t think to take it into work today. DOH! I must remember to take it in tomorrow … and ignore the strange looks!
Tags: aches, arthritis, doctor, exercise, flare, flare-up, GP, joint pain, medicine, methotrexate, NHS, pain, physio, physiotherapy, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), steroids, stiffness
This perfectly innocent post title, no double entendres intended, is supposed to set the 1950’s scene for you. Maggie (friend and frequent commenter on this blog) has always said that the town where I live is like stepping back into the 1950s, and generally I reckon this is a pretty good thing. The 1950s is a pretty nice, cosy, friendly place to live; that is until you get hit by … da da da daaaa, 1950’s Doctor Man.
Alas, the knee has continued to flare and I decided, after having a lot of stiffness and pain yesterday, that I really should go back and say a) the steroids worked but they ain’t workin’ no more and b) can you ask the physio to have a look at the knee please? So I did. Of course, as I’ve mentioned before, if you make a ‘same day appointment’ (and the choice is same day or 2.5 weeks away if you’re lucky) then you can’t choose your doctor; you just see whoever is available.
Now when I did this two weeks ago I hit the jackpot with Dr Locum Eye-Candy, but alas, this week my luck ran out and I got 1950s Doctor Man. Now don’t get me wrong, he was pleasant enough in a dried-up old stick kind of a way, and true to his 1950s roots he did listen patiently and he did actually bother to examine me properly (two things you certainly can’t count on these days in the NHS!), but then the downside of being in the 1950s kicked in, and I got the 1950s lecture about RA. I thought things had come on a lot since this kind of thing: ‘Well, that’s the nature of the disease. It’s a progressive disease I’m afraid and it will flare now and then. Now, I’m not trying to depress you but really that’s just the way it is and there’s not a lot you can do about it. You’re on a high level of methotrexate and other medication already, so … ’ And so on, and so on, for about five minutes.
I’m not actually saying he’s entirely wrong, by the way – fundamentally that’s probably true, but he didn’t make one single suggestion about sensible things I could do. OK, I wasn’t expecting him to suggest Reiki or a gluten-free diet or anything else that your average 2011 British GP would consider a bit ‘far out’, but what about, for example: exercise … or rest, apply heat … or cold, consider a steroid injection in the joint, come back if it gets worse, have physio, get hubby to do all the cooking, washing up, shopping etc. for the next few weeks. <Grin – of course he wouldn’t suggest that! Not the done thing at all in the 1950 to have a man doing all that!>
I must admit I wasn’t feeling very ‘with it’ and I damn near forgot to actually ask what I’d gone in to ask, which was since I was doing a 50 minute round trip every week for ultrasound treatment on my shoulder at the moment with the physio, could he please ask the physio to treat the knee too? Finally I did remember, and, give him his due, he agreed immediately and not only that but he actually wrote me a note (with his very smart 1950′s fountain pen) to take in with me, hopefully circumventing the need to wait five weeks for the next official appointment for a knee referral, by which time the flare will probably be over.
I did also ask him whether I should be exercising it or resting it, and he said definitely resting it … but is this right, I wonder, or is this just more 1950s medicine. Not that long ago the only recommendation for RA was ‘bed rest’!
Tags: aches, arthritis, flare, flare-up, joint pain, NHS, pain, physical therapy, physio, physiotherapy, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatology, stiffness
I posted a while ago about how the physios at the hospital ‘in line with the private sector’ were limiting appointments now, and generally becoming officially less flexible and less helpful. Well I had further proof of how in line with the private sector they aren’t on my last visit.
When I previously went for physio I had been referred for my shoulder, but when the knee flared up, knowing it was all RA, she did some work on the knee too. Now, and this is no way the fault of my physio herself I should add, it’s a typical NHS ‘powers that be’ decision, even though I couldn’t bend or straighten my knee fully, had been to the GP, had got oral prednisiolone and had had it confirmed that my knee was flaring, she couldn’t do any ultrasound on my knee at all. Because it was too inflamed? Nope. Because she wasn’t sure it was the right treatment? Nope. Because I had been referred only for my shoulder!
Fortunately the knee is actually very nicely on the mend by itself, and equally fortunately the ultrasound on the shoulder (actually the acromoclavicular joint, but I can’t keep spelling that!) has helped enormously, so not THAT much to whinge about. Also I have a cunning strategy up my sleeve if the knee doesn’t mend fast enough or gets worse again. I don’t know if it’ll work but my cunning plan is to phone the GP, explain the situation and get them to give me the referral letter, so that I can walk into the physio next time and say, ‘Here’s the letter – can you do my knee now please?’
Otherwise it’ll be the usual ‘five weeks from referral’ and I’ll be going in for six sessions for my shoulder, which will be over before the referral for the knee is officially through. This is not only a problem because if the knee needs doing it needs doing a.s.a.p; it’s also an issue because it’s 50 mins to an hour driving time to and from the hospital IN WORK TIME! So glad the NHS are working towards keeping everyone in work! HAH!
Tags: aches, acromoclavicular joint, knee, physical therapy, physio, physiotherpay, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, shoulder, steroids, stiffness, ultrasound
Well … half-an-hour’s drive, ten minutes or so waiting, thirty minute consultation … and the answer turned out to be, for the moment anyway, not to physio! Aaaaaaargh! I’ve only waited since January for this appointment. Still, there were perfectly sound reasons not to physio – and at least I had a fun time in the waiting room reading old copies of National Geographic!
There was one small thing I hadn’t accounted for … I’ve just started a (very) short course of oral steroids for a very swollen knee, and the physio that works for me, or has always worked for me in the past, is ultrasound. Obviously the steroids are busy trying to reduce the inflammation, and equally obviously that is intention of most treatments including the ultrasound. Aye, but there’s the rub … (talking or rubs I must rub some of that nice ‘Nature’s Kiss’ ointment into my knee … I keep forgetting about that … but back to the main point), the way that ultrasound works (putting it simply, which is the only way I know!) is that it apparently INCREASES the inflammation quite rapidly in order to trigger the body to go ‘ooh, that’s inflamed’ and kick into place a process for doing something about it.
So … if I had ultrasound, my physio basically thought that I might well be either inadvertently cancelling some of the steroid effects or, at very least, wasting my time because the steroids might counteract the ultrasound without it being able to do anything.
Now the physio wasn’t at all sure about this, and neither am I, but we decided it was better not to risk it so I’ve got to go back again on Tuesday morning!
The more I think about it the more I’m not convinced by this whole argument … but I’m way too tired to work out why now, so I’m off to bed and I’ll give it some thought tomorrow!
Tags: aches, flare, flare-up, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, stiffness, work
We’re a nervy (or at least reticent) bunch when it comes to telling friends and colleagues about our RA, and often for very good reason! There’s probably a post born every minute about this. Two good recent ones are from Squirrel and Laurie at ‘Frozen Woman’. I suppose it’s partly that we’ve all had bad reactions from someone, somewhere at some point, and it’s once bitten, twice shy, but also, as Squirrel mentioned in her post, that it’s really hard to get people to understand that you can be fine one minute and flaring the next … and then fine again soon after, if you’re lucky.
What one doesn’t often hear is what a good laugh it can be trying to explain things to folks wot don’t know.
Well today I had to explain to the ‘temp boss’ (‘the boss’, who knows all about the whole RA thing, being on maternity leave) that she was on permanent coffee duty today because I couldn’t get up and down the stairs terribly easily. Now I was probably muttering a bit because this whole RA thing shouldn’t make me feel embarrassed, but it does, and I was feeling guilty (another dumb and pointless emotion that shouldn’t be related to being ill!) about not being able to get my share of coffees, and temp boss’s hearing isn’t as acute as it might be, and she was probably only half listening because her mind was on getting coffees, but anyway, somehow my saying, ‘I won’t be able to get the coffees today because I’ve got a bad knee’ followed by an attempted explanation of flaring etc. got translated in her mind as ‘I can’t drink coffee today because I’ve got a bad knee’ and the pair of us ended up in fits of giggles at her vision of all this coffee pooling somehow in my knee and causing it to swell up.
Well, laughter is definitely therapeutic, so for once telling a colleague about RA turned out to be more therapeutic than painful! I think the pair of us will be referring to any future knee flares as ‘coffee on the knee’ from now on!
Tags: aches, arthritis, doctor, flare, flare-up, GP, joint pain, joint stiffness, NHS, oral steroids, pain, prednisolone, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, steroids, stiffness, stifness
I’ve read a lot on the net about oral prednisolone and generally I’ve thought, ‘Hmm, glad I don’t need any of that then …’
Me and my big mouth …
Anyway, here’s why. I woke up Tuesday morning and my left knee, which is where I had the major, major, MAJOR problems in 2008 but which has been relatively OK since, was stiff … I mean REALLY stiff, as in couldn’t straighten, couldn’t bend. Oh well … it didn’t last long. It stayed a bit stiff until about lunchtime and then wore off. It didn’t hurt at all so I decided not to worry about it. ‘One of those things,’ I said to myself, ‘one of those little unpredictable joys of R.A. No doubt that’s the last I’ll hear from that knee for a year or two.’
WRONG! Woke up yesterday morning and the knee was really stiff again, but instead of wearing of by lunchtime it didn’t wear off all day! It still didn’t hurt so I thought, ‘Oh well, maybe it’ll be OK tomorrow.’
You guessed it – this morning it was really stiff again and it hurt (just a bit, but it did hurt). It also felt as though someone had strapped a great big lead weight around it, which says ‘swollen’ to me, although it’s not actually noticeably hot or inflamed. So I gave in and took the doctor lottery – i.e. ‘same day appointment with a member of the same day team. We can’t tell you who you’ll be seeing and it may be a doctor or a nurse.’
Well it was obviously my lucky day because I saw Dr. Locum Eye-Candy, and apart from being eye-candy he also seemed pretty switched on and sensible and (mostly) listened to what I had to say. OK, so he got slightly confused and when I’d said, ‘This started on Tuesday’ that somehow got translated in his brain to, ‘This is an ongoing problem I’ve had for months’ – but hey, we got that straightened out pretty quickly, so I’ll let him off! (Also perhaps I got a little confused. He was GORGEOUS – made it hard to concentrate on why I was there … Hmm, hubby will proofread this for me later. Perhaps I should take it out … nah … )
So here I am about to experience my first ever oral prednisolone – oh lucky me !
On the bright side, I am taking minimal quantities and assuming it works I will only be on it for three days, so I don’t anticipate any problems. In fact I anticipate a miraculous cure. Let’s hope I’m right. I don’t always hate it when my predictions come true!
Also, on the really, really, really sunny side, IT’S NOT AN INJECTION INTO THE JOINT! (Or indeed an injection into the bum, which is always mildly embarrassing, and would have been ever more so if Dr. Locum Eye-Candy had been giving it to me!)