Tags: aches, arthritis, Chocolate pizza, life, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), stress
I do hope that RA hasn’t come to define my life, but I when Robin at The Truth About JRA asked me about a medical test I’d taken some years ago and I couldn’t remember I found myself thinking ‘That was before R.A. Well … I can’t be expected to remember THAT far back!’
I was diagnosed eighteen months ago.
That scares me. I’m not sure what to ‘do’ with this realisation that RA has become such a big part of me … possibly the best thing would be to screw it up in a small ball and throw it in the waste paper bin.
Thank goodness that if I wake up with this thought at four in the morning I have my trusty iPod to console me – newly loaded with two excellent glum thought-destroying missiles – Cranford (a present from hubby) and Pride and Prejudice (a present from me!) I can also picture Wren building a chocolate pizza, which is sure to cheer me up!
Tags: aches, arthritis, flare, Hugh Laurie, Jeeevs & Wooster, Miranda Hart, pain, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), Stephen Fry, telly, TV, weather
Ouch, ouch, ouch.
It rained all day on Friday, and I had to come home early from work because I was in a significant amount of pain and just not working effectively. It is entirely possible that teaching ‘the boss’ to crochet was not the best move for either my achy hands or our workload, but it was fun!
Ohoh, I thought, here comes a proper flare … then, curiously, in the evening I felt much better (even though it was still wet). The next day I woke up with one of my approximately five-monthly periods! I’ve said before that I often find I’m completely R.A. symptom free while menstruating, and sure enough I was almost symptom free over most of the weekend …apart from period backache of course … well, there’s always something.
It probably helped that we had a beautiful day yesterday, sunny, bright, deep blue autumnal sky, gentle breeze, trees clinging on to the last of their leaves, almost sparkling in a variety of fiery hues … lovely. (Why isn’t fiery spelled firey? Sorry, I have a tendency to go off on tangents like this … you may have noticed.)
Unfortunately it’s been pouring most of the night and it’s still pouring now … and I HURT! ‘The boss’ has a day off today so, as there are only the two of us, I ought to be here manning the (dead quiet) phones, just in case I miss something vital. Not sure how long I’ll stick it though! The problem is, the moment I do decide, ‘That’s it, I’ve had enough!’ and go home, I know some client will ring with something vital. (I even know which client … the same one that picks every single occasion when I’m away to find something urgent that needs doing!)
So I shall probably struggle manfully (womanfully, penguinfully?) on and just collapse these evening in front of some silly comedy on the telly or something. At least I know there is some silly comedy to collapse in front of. There’s Miranda at 8:30 – I’m still not sure about this. It’s only had one outing so far, last week, and it’s very old-fashioned Victoria Wood style humour, pretty basic gags, but the lead, Miranda Hart, is very good. Then there’s huge tracts of the wonderful ‘Jeeves and Wooster’ series to watch, as Hubby got the whole shebang from my bro for his birthday. It’s the series with Stephen Fry and Hugh Laurie in the eponymous roles. (Not sure I’ve used eponymous correctly there, but it’s a great word, isn’t it?) It ran to four series and is ideal to watch when feeling ‘carp’. The script takes a few liberties with the original P G Wodehouse stories, but I rarely find it worries me, and Fry and Laurie have absolutely become Jeeves and Wooster for me, to the extent that when I read the original books I hear Stephen Fry and Hugh Laurie’s voices in my head! (Hmm, afraid that last sentence makes me sound crackers, but never mind … I probably am.)
Right back to work … oh joy … Mantra for the day: “Me gusta mi trabajo, Me gusta mi trabajo, Me gusta mi trabajo…” (I like my work in Spanish … Hoping the mantra might a) help me learn Spanish, and b) convince me that me gusta mi trabajo! (I do … really I do … just not today!)
Tags: aches, arthritis, fatigue, flare, joint pain, pain, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), sleep, tiredness
I was getting to the point yesterday afternoon where I was fairly convinced I was having at least a fizzle … some reasonably significant pain in the afternoon, tiredness too, and by the time I went to bed I couldn’t find a comfortable position because however I lay something hurt.
I’d had a busy, fun evening and a very unhealthy dinner! Yesterday was the night of our local sewing/quilting/crafting/whatever group and as a friend of mine who works locally but lives some way away also goes along, I asked if she wanted to come back to ours for a quick bite to eat before we went. I warned her it would only be pizza because we were in a hurry … so not a healthy start there … and she kindly contributed a chocolate putting with chocolate sauce AND cream for afters! Oh dear … but yum.
Anyway, here’s the thing … I feel much better today! So perhaps pizza and chocolate pudding is my ideal RA diet?
Erm no … before i got lots of angry comments, I’m not entirely serious! But it does show how careful you have to be not to attribute RA (or lack of it) to things without doing some serious research and testing!
Tags: aches, cats, enormous cat, fatigue, RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), sleep, tiredness
Picture the scene: it’s three in the morning and I’m in pain and wide awake. Tim Piggot-Smith has failed me – for once even his dulcet tones reading David Starkey’s Monarchy: The Beginnings haven’t lulled me to sleep. Neither has a podcast of a lecture from the wonderful Dr. Stuart Lee on Anglo-Saxon History – my other failsafe. I’m at my wit’s end.
Suddenly there’s a crash, a bound, and a superhero comes flying through the bedroom window and lands on the bed with an enormous thump. Yes, it’s The Grey Shadow, feline super-hero extraordinaire, to the rescue. A lick, a purr and I’m already feeling better.
Soon the gentle sound of purring has done the trick and I’m fast asleep.
I wake up at around 5:30 and The Grey Shadow has mysteriously disappeared. My ankle’s in agony. Why? Ah yes – Enormous Cat is fast asleep on top of it. I wonder where The Grey Shadow went? He would have been far too considerate to sleep on my ankle.
Thanks to Wren at The Rheuma Blog for reminding me about this incident with her post on wee beasties! What would we do without them? I’d far rather put up with the discomfort of the occasional sore ankle than not have these nocturnal visits from my superhero at all!This is enormous cat. You can tell it’s not The Grey Shadow, in spite of the general similarity in colour and size. The Grey Shadow wouldn’t be seen dead on a pile of washing!
Tags: aches, exhibition, leg problems, morning stiffness, photos, Rheumatoid arthritis, standing
Once again I entered the local photo competition this year – I’ve entered it for the previous three years, since it started, and I’ve always been shortlisted, and even won some small-scale prizes, but never won a top prize. This year I was shortlisted again, and I dithered about whether to go to the prize presentation or not … you know what these things are like; lots of standing around, which I’m not so good at these days, making inane conversation with people you don’t know and wishing them luck out loud when really you’re wanting to win yourself (not that I’m an overly competitive penguin of course), and wondering when you can go home.
On the other hand I like to support local events when I can … especially when they occur in the building where I rent an office. They notice if I don’t turn up!
I asked hubby’s opinion and he said, ‘Oh go along and practise losing gracefully again.’ I went along and practised losing gracefully again. Trouble was that there was nowhere to sit. Well, that’s not quite true – there were about forty people and about two chairs. I suppose I should have gone in with my stick and a conspicuous limp in order to look like someone who needed to sit down … but the organisers might notice that the limp only lasted for one evening, since they see me every day!
I couldn’t have asked the very frail looking elderly gentleman to give up his chair.I COULD have just thrown a woman’s handbag off the other chair and sat on it, while gently nudged away a man who was leaning on the back of it, but I decided to sit it out … or rather stand it out.
Well, I lost gracefully … well, fairly gracefully … well, apparently gracefully even though I was sulking inside, but I came away feeling extremely chuffed nonetheless. Why? Because I remembered that last year I couldn’t attend the ceremony at all because I KNEW I couldn’t stand up for even ten minutes or so, and I KNEW I would feel wretched the next day if I went. Another little proof of how much better I am this year.
I was a tad stiff this morning, whether from standing or sulks I’m not sure, but nothing serious, and now it’s mid-afternoon and I’m fine. I’ve even revisited the exhibition of photos and grudgingly admitted that the winning picture is rather good!
Tags: aches, arthritis, car, fatigue, fibromyalgia, health, joint pain, one injection cure for RA, pain, RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, stress
I was just revisiting my first ever post, about reasons to be cheerful, and I was pleased to see that most of them still stand (the last one doesn’t and one other … if you read it, and if you’ve read some of my other posts, I’m sure you won’t have trouble guessing which one no longer stands! But the point is there’s obviously a lot to still be cheerful about!
While I was at it I thought I’d revisit the nearest post last year to today’s date, and guess what? The car broke down then too! Now that time it cost me an absolute fortune, so another reason to be cheerful is that it’s really not so bad this time. (Although to be honest the car really has got to the point where I should be thinking about replacing her.)
And a final reason to be cheerful is that I’m SO much better, health-wise, than I was this time last year! I was having a terrible time with the RA then – giant puffball knees, every joint aching (or at least it seemed that way) and probably as yet undiagnosed fibromyalgia on top of that! This year it seems that maybe they’ve finally got the medication dosage right (for now anyway) and I’m really doing very well indeed. If that’s not a reason to be cheerful then I don’t know what is! Here’s hoping it lasts – and wishing all my virtual and actual RA friends a similar and long-lasting outcome!
Now if only we could hear a bit more about that ‘one injection cure for RA’ that was being so hyped this time last year …
Tags: aches, fatigue, fibromyalgia, flare, hospital, pain, physio, RA
I can now claim to know the car park at the hospital where I have physio quite intimately. I know how many spaces there are, I know what sort of trees surround it, I know the view across the fence over the corn field, I know there are blue tits and great tits and some sort of finch foraging in the trees, I know that the oak tree has a few early common spangle galls on it.
No, I wasn’t doing some sort of strange nature survey of the hospital car park – I was waiting for the RAC! Yes, the car has broken down AGAIN! Having lost my marbles and my rag, I have now also lost my car! (Well, hopefully not permanently, but it’s in the garage.)
My wonderful hubby drove out to see if he could help and,although he couldn’t, he waited another hour with me until the RAC arrived. It was a 2.5 hour wait in total – not fun.
Fortunately the RAC guy (who was nowhere near as lovely as the adverts would like you to believe, but OK) got the car going – but I had to take it into the garage because it was still showing faults.
I was patting myself on the back last night thinking how well I was coping with all this … but when I got home it all finally hit me. I felt absolutely exhausted, headachy, aching all over, sore hands, sore feet … hmm, so looks like a fibromyalgia AND RA flare, I thought. Lovely …
But no – I made myself get an early night, convinced myself that the car would probably be OK,managed not to worry too much and … well, I’d like to say I feel a million dollars today but that would be rather overstating things, but AS YET I am flare free. Yippee!
I can’t promise that’ll still be the case if there’s real car disasters on the horizon, but I’m OK for now!
Could be that having just had physio helped too!
Tags: 5 HTP, aches, aerobic exercise, amitriptyline, arthritis, consultant, deep sleep, exercise, fatigue, fibromyalgia, griffonia simplicifolia, lack of sleep, methotrexate, NHS, pain, RA, REM sleep, rest, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), sleep, tiredness, weight gain
Well, I had my consultant appointment on Wednesday – saw one of the registrars who was really nice, listened, sympathetic, examined properly, no sarcastic comments or comments about how lucky I was to have RA mildly. (I figure no one’s lucky to have RA – full stop!)
She did drop a bit of a bomb-shell though, or so I felt at the time – that my symptoms indicated fibromyalgia as well as RA. Fibromyalgia symptoms are aches and pains in the muscles around some joints, serious fatigue and a feeling of general unwellness … sounds quite simliar to RA in many ways, only muscle based, and one of its old names was in fact muscular rheumatism.
Having got over the initial shock and feeling of oh hell, something ELSE to contend with, I can see some reasons to be cheerful though!
1. My sister-in-law has had fibromyalgia for quite some time now – grim for her, but it’s handy for me to have someone I can talk to who really understands what it’s like.
2. It’s not like having RA twice over – which was my initial feeling. Fibromyalgia (which makes you feel generally crap and all over achey, and actually affects muscles) is not progressive and not (if you can crack it) permanent.
3. The current most popular theory about fibromyalgia is that it’s fundamentally caused by a lack of deep sleep. People with fibromyalgia may be insomniacs, but just as often they’re people who seem to get plenty of sleep, but it’s REM sleep (dreaming sleep) rather than deep sleep, and that’s not good enough. And the good news is there ARE things I can do that can improve my sleep.
4. There IS a drug that’s often successful in curing fibromyalgia if given in small doses (amitriptyline) but it has some unpleasent side effects including weight gain, the last thing I need! But before I try that there are also things I can do to try to balance my own sleep pattern. These are getting aerobic exercise (kinda tricky with RA but I’m working on it), having a regular routine and going to bed at similar times each night, reducing tea and coffee (a real challenge for me, but as most of it is instant and decaf I don’t think it’s much of an issue really) and possibly trying a supplement derived from griffonia (griffonia simplicifolia) seeds, called 5 htp, which increases seratonin in the brain and may help to improve sleep.
5. Because there are things I can actually do to help myself, however challenging they may be, I actually feel empowered – I feel I have a chance to kick this latest thing right back, whereas with the RA I feel, I suppose, pretty disempowered; I just have to lie back and hope the meds work.
So … right now I’m feeling surprisingly positive about the whole fibromyalgia side of it. Let’s hope I can keep up the exercise, regular bed times etc. and that that actually does do the trick. As to the RA, I’m on an increased dose of methotrexate although the consultant was wondering if I was just one of those people it wasn’t going to be great for – but having had a very good response to it early on, she and I both think it’s worth a shot to give it another few months on a higher dose. After all, in the UK on the NHS with mild RA, there’s not much alternative!
Tags: aches, fatigue, flare, flare-up, pain, psychology, RA, Rheumatoid arthritis
I had a really good week last week – out three evenings during the week (OK, not exactly boogieing the night away, but still out and having fun), an exhibition and a carnival at the weekend, and some gorgeous walks in the local wood and heath with hubby.
I can’t say it was a pain-free week unfortunately, but it wasn’t TOO bad. I did worry, of course, that was overdoing it, and perhaps I did … I feel fairly rubbish this morning … but then again it’s Monday morning and I’m back at work, so that’s normal, isn’t it?
So while I absolutely KNOW that flares are a thing that happens and they are not ‘just in your head, dear’, I do wonder if I’ve kind of talked it up by thinking I was overdoing it and worrying that I’d have one.
Not that I’m sure I’m having one now – but you see, I’m still worrying about it … very silly really; why can’t I just get on with my life and put the worry to one side?
Maybe it’s because I’m for once NOT particularly stressed at work, not stressed about Tiny cat etc. etc., stopped stressing about someone I used to consider a friend and don’t anymore … I’ve run out of other things to get wound up about and I have to stress about my RA!
Hmm, I’m not really managing to say what I want to say here, but I’ll post anyway and perhaps someone can make sense of my ramblings. If so, please comment as I could od with some sense right now!