Tags: aches, arthritis, exercise, fatigue, joint pain, knee, pain, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, sleep, stiffness, tiredness, work
I’ve spent the last six months on a very useful course run by our local university business school, on helping small businesses to grow. It’s been great and I’ve met some lovely people along the way. Tonight we were asked to do a ‘showcase’ where each of the businesses on the course had a little exhibition stand and said a few words into a mike and generally chatted to invited guests, university bigwigs, previous course attendees and each other.
Unfortunately I was dreading it because I knew the admin was a mess. Fortunately although the admin was a mess, a handful of very brave people had stepped in at the last minute to salvage what they could, and they did a marvellous job. However, as suspected, when we arrived to set up our exhibit, rather than the floor-plan with everyone’s tables labelled, display boards there and of course, vital for me, and definitely requested in advance, CHAIRS, there was organised chaos.
Fortunately the wonderful people who’d stepped in at the last minute were on hand to sort everything out, and equally fortunately we’d brought some folding chairs with us! I did feel sorry for some of the others though, as there were no chairs available at all.
Having said that, once the evening got going I hardly had a chance to sit down, as we were all buzzing about and chatting to each other. There was a really good atmosphere and, in spite of not looking forward to it, we had FUN. On the other hand, I’m absolutely wiped out, completely shattered, totally exhausted … and my left knee is giving me gyp from so much standing around.
Entirely my own fault of course. I had a chair, I have the capability to sit down in it, but I suppose it was partly not wanting to miss out on anything and partly the old not wanting to admit I had a problem, leading to one of those conversations. You know the ones: ‘My auntie’s got arthritis too. It’s all cleared up though since she started rubbing in bindweed’ or ‘all you have to do to get rid of it is lose some weight.’* What I should have done was go and have a chat with the yoga lady and get her to give me some stretching exercises – but every time I looked in her direction (at least right up until the last few minutes) she was deep in conversation.
Oh well, working from home tomorrow so I think that might start with a bit of a lie-in!
* Not that I’m denying that would help!
Tags: aches, arthritis, cold, flare, flare-up, joint pain, knee, knee cosy, pain, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, stiffness, stress, warm, weather
Oh crumbs – it’s snowing! You may remember that in my previous post I was winging about the cold the other day; well, it’s colder.
Yesterday the journey home was worse than I ever. I had a hectic day at work but I felt fine (if a little stressed) … and then I left the office to go home.
The moment my left knee found itself outside it started to complain, and the complaints got louder as I drove, to the point where I knew I wasn’t able to concentrate a hundred percent on my driving. Not good!
Although I get the ‘traditional’ sore and achy hands and feet of RA, the worst affected thing has always been my left knee, and if I have a flare that’s usually where it starts. This is the first year I’ve really noticed the cold affecting it though.
I’ve been trying to think of a way to keep that knee warm, specifically while driving. A lap blanket (Afghan in the US I believe) wouldn’t be safe, as it might slip into the foot-well and get tangled with my driving foot. (Fortunately, considering the sate of the left knee, I drive an automatic!)
I’ve decided the solution might be a ‘knee cosy’! I’m not quite sure yet how it would work. Perhaps a combination of a sports-style knee protector and a pouch that could incorporate one of those gel reusable hand-warmer type things?
I’m disappointed, but not surprised, to discover I’m not the first person (by a long, long way) to think up the neat ‘knee cosy’ moniker, but people are using it as a name for lap blankets, not for my cunning plan. I may have to make this my Christmas craft project!
Tags: aches, arthritis, R.A., recipe, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), stiffness, weather, work
No, unfortunately I have not just come back from a spa break or something. The warm, spicy sauna was my kitchen a few hours ago, and very nice it was too, having come in from work absolutely freezing.
The trouble is, if you can call it a trouble, that I only live a couple of miles from work, so I get into my freezing car at the end of the day and arrive home frozen to the core ten minutes or so later, as the car hasn’t had time to warm up. No good for me or the car really! I definitely find joints stiffen more when they’re really cold, and I generally arrive home pretty achy at this time of year. Hubby, being the good sort he is, is usually there to provide warming hugs and coffee (unless he’s working late), but today I decided I needed something really warming for supper too.
So I made Polly Penguin’s Super-easy Vaguely Moroccan-inspired Chicken and Couscous, which always goes down well. Since this involves much froiling (a combination of boiling, broiling and frying, except that really it isn’t frying as I don’t use any extra fat) and lots of lovely warm-smelling spices, by the time I’d finished the kitchen was steamy and smelling like a spice market, and I was WARM! Even warmer when I’d eaten it.
If anyone else fancies turning their kitchen into a spicy sauna, here’s how, but I warn you it’s a bit vague as recipes go because I don’t tend to measure anything, including time!
Polly Penguin’s Super-easy Vaguely Moroccan-inspired Chicken and Couscous
Serves one penguin and one hubby
1 large onion
1 chicken breast (I’m sure Quorn would work equally well)
Half a can of tinned plum tomatoes
A couple of squirts of tomato purée
6-8 green cardamom pods
1/2 teaspoon of ginger
1/4 teaspoon of cinnamon
A generous grating of fresh nutmeg
Couscous – I like to cheat with a packet that’s got bits and bobs mixed into it
Dry stir fry the chicken over a fairly high heat, adding a little boiling water as necessary to stop it sticking to the pan. Add the onion and a bit more water and turn the heat down. Lightly crush the cardamom pods, and chuck these in along with the rest of the spices. Allow the onion to soften for five mins or so adding boiling water as necessary. Then chuck in half a can of tomatoes and allow to simmer on a medium to high heat until it’s reduced (i.e. a lot of the water from the tomatoes has boiled off) . Then turn down to a low heat and prepare the couscous as per instructions on pack. This generally involves waiting five minutes. Once the couscous is prepared and you’re waiting for it to be ready, add the tomato purée to the pan and stir in, which will thicken everything up beautifully.
Serve up and enjoy – and feel lovely and warm and, if like me you hardly ever cook properly, virtuous!
The whole thing only takes about half an hour from getting the onion out of the cupboard to serving up, so you don’t have to be on your feet for ages either … and there’s plenty of time in between for a quick sit down!
(I kinda spoilt the warming effect by following this up with a toffee ice cream … oops!)
Tags: aches, arthritis, exercise, fatigue, fibromyalgia, joint pain, knee, neck pain, pain, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), sleep, stiffness, stress, tiredness, weather, work
Well more split Penguin really – my right side is ready to take on the world this morning, but my left side just wants to go back to bed with a hot-water-bottle (or perhaps Enormous Cat on hot-water-bottle duty). This is not my usual pattern – usually I have, for instance, a bad knee and a worse knee, or a pair of bad shoulders, but this morning everything on the right is fine but my left hand, elbow, shoulder and knee are all stiff and painful!
I rather suspect that this has as much to do with fibromyalgia than it does with RA, because although the knee and elbow feel joint-related the shoulder is definitely muscular … well, when I say definitely it’s actually hard to be sure I find, but it doesn’t feel like the usual rheumatoid arthritis pain. I’ve had a few problems in the last few days with it, having foolishly swung round to grab something behind me on Saturday and then found myself curled up in a ball on my chair going, ‘Ow, ooops, I really shouldn’t have done that’.* Unbelievably I then did exactly the same thing twice on Sunday! It’s such a dumb thing to do for someone who knows damn well they get problems in neck and shoulders! I blame the fact that they’d felt so good lately that I’ve been less aware of having to be careful … which I suppose is something I really can’t complain about.
Oh well, I have a mountain of work to get through today thanks to the over-enthusiasm of a colleague on Thursday who, forgetting I was on my own for the first half of the week, may have bitten off more work than we can chew, so I’m going to have to let the right side rule!
*This is the expurgated version
Tags: aches, arthritis, diagnosis, doctor, GP, joint pain, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, stiffness, work
I met up with a friend yesterday who I haven’t seen for ages, in spite of the fact that we work in the same tiny town. It was great to see her but I was somewhat dismayed when she asked me about my arthritis and then told me that her husband seemed to be suffering from what appear to be RA symptoms too.
‘One of his fingers is permanently hooked now,’ she said, ‘and sometimes when he goes to open a jar or something he hand locks around it and I have to force the fingers open one by one. I hate doing that, it’s gross.’
My immediate reaction was something like ‘Aaaaaaaaaaaaarrrrrggghghhhggh!’ This was partly for the grossness and partly because you MUSTN’T do that. ‘Every time you force his hand open you’re damaging the joints more!’ I nearly screamed.
‘Well,’ says she with a shrug, ‘what else can we do?’
‘What treatment is he on for it?’
‘Oh he isn’t on any treatment. He’s not been to the doctor about it.’
Did I mention Aaaaaaaaaaaaarrrrrggghghhhggh?
Well … erm … that might be your answer about what else you can do about it then! Now I know some people don’t want to go on treatment and have some success with alternative therapy or diet, and the very best of luck to them, but he’s not doing that either. He’s just ignoring it and waiting for it to go away. What makes it worse is he has a very active, physical job and he really NEEDS to be able to do this stuff.
On reflection, perhaps that’s why he’s not going to the doctor – he’s terrified of being told that he shouldn’t/can’t carry on working, so he’s just trying to ignore it. I can kind of sympathise with that … but he’s still crazy if you ask me!
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: 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: 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!