Tags: arthritis, broke, cats, fatigue, joint pain, methotrexate, Middle-sized cat, money, MTX, NASTY, National Institute for Clinical Excellence, NHS, NICE, occupational therapist, OT, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, sleep, stress
Firstly a ‘big shout out’ to Warm Socks for reading comment replies. Well done to you, m’dear! I also read them when I remember to tick the little box, but I usually don’t remember.
Secondly, for them as don’t keep up with comment replies, like me, tinglywinglypingly is a thing of the past – hurrah.
Thirdly, I had my methotrexate last night and, unlike last week, not only kept it down but slept like a log afterwards and feel great today. Middle-sized cat is also delighted, as he tends to sleep next to/on top of me, so he also got a good night. After a trip to the V-E-T yesterday he’s now costing me about SIXTY POUNDS A MONTH in medication … but of course he’s worth every penny, and more.
Hey ho – it’s only money … not as important as health.
I obviously value him more than NICE values me, or rather values other R.A. patients who are not so lucky as I am currently! This article in The Guardian tells an all too familiar story.
Tocilizumab (another biologic), which costs £9,000 per patient per year (so about the same per month as middle-sized cat costs me per year … but then consider the difference in resources between lil’ ol’ me and the British government … on second thoughts, maybe not; I’m not quite broke yet), is being given to patients in Scotland (and indeed most of the rest of Europe), but NASTY has decided once again that it’s too expensive for patients in England. And once again the fact that it could keep people in work and reduce the costs of unemployment benefit, keep them walking and reduce the cost of wheelchairs, keep them out of hospital and reduce the costs of round-the-clock healthcare … etc. etc. etc. has escaped them. It’s an argument I’ve had with them a few times before on this blog, here and here and
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: arthritis, fatigue, medication, pill tray, pills, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), sleep, stress, tablets, tiredness
I wondered why I was feeling so peculiar this morning … put it down to the fact that hubby and I both slept terribly last night, as did half of Norfolk if hubby’s patients’ comments are anything to go by. Now I wonder if it was more than that.
When I got home this evening I went to take my evening pills (augmented at the moment with antibiotics for the lump doing Vesuvius impressions on my arm) and found it empty.
I then had a vague memory of taking my pills after breakfast this morning and thinking, ‘Odd that I forgot to take them before breakfast as I usually do!’
You guessed it – I didn’t forget to take them before breakfast. I had my evening pills about twenty minutes after my morning pills.
I think I should probably be panicking and phoning NHS Direct and stuff, but given that that was now nearly 12 hours ago and I’m still sitting here writing this, I figure there’s probably no need. Luckily the only apparent ‘side effects’ were the desire to eat a horse (not literally of course, although who knows what went into the pasty I ended up having, most unhealthily, for lunch) and a feeling of general wooziness which may have had nothing to do with it given that a) I did have a lousy night and b) I’ve been feeling dopey all week!
Tags: arthritis, blood test, cats, GP, methotrexate, MTX, nurse, RA, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), stress
I have had a bad day … but a good R.A. day!
Here’s how the day’s gone:
1. I had completely forgotten I had a blood test this morning, went sailing off to work, got there, realised that I should be going to the GP, turned around, and the red petrol light came on. Mad dash to fill up with petrol from my spare can before the appointment, because I KNEW that otherwise I’d forget.
Positive R.A. stuff:
- All results from the previous test were fine – in spite of a recent increase in MTX.
- The nurse only had to have one go at getting my blood instead of the usual Penguin is a pincushion routine.
- I got the top of the petrol can and it didn’t hurt!
2. For some reason the red light wouldn’t go out, so I decided to go and buy some petrol. Just as I’d driven PAST work on my way to the petrol station, the petrol needle readjusted and the light went off!! Aargh. Decided to get some petrol anyway and fill up the can. Filled up the can, put some more in the car, went in and joined the queue. There was a man in front of me but I didn’t take much notice of him, as you don’t. When I got to the front the conversation went something like this:
Penguin: Pump 2 please
Penguin: Number 2 … please.
Penguin: Pump … number … 2 … please?
Assistant: Ohmegawd, ohmegawd, ohshite, ohmegawd, stop Mr Pratt … Mr Pratt, Mr Pratt!* oh no he’s gone. Lydia, Lydia, shite, heeeeeelp.
As you may or may not have guessed, the aforementioned Mr Pratt had told her that he was on pump 2 and she hadn’t checked. It was obviously not deliberate as he had an account with them so it can be changed on that, but it caused havoc as far as me paying went, and added about ten minutes to my already delayed start at work.
Positive R.A. stuff:
- I worked the petrol pump and it didn’t hurt at all! (This is not usual at all for me.)
- Standing about patiently (and then mildly irritably, and then impatiently) while the assistant sorted herself out didn’t hurt either. My feet were fine.
3. I get to work, tell ‘the boss’ what kind of morning I’ve had and firmly announce that from now on the day is GOING TO GET BETTER! I am determined that this will be so. I am thinking positively. NOTHING ELSE is going to go wrong.
Then, at about 10:33 I realise I’m supposed to be in the cafe down the road meeting a friend for coffee …at 10:30. Aaaaaaaaaaaargh. I tell the lass that works for me (a.k.a. the boss) that if my friend phones, say I’m on my way (she’s a good lass, she could have worked this out for herself, but I’m panicking at this stage), throw my coat on and run (well, jog … well OK, walk fairly fast) down the road.
I’ve only gone a couple of hundred yards when a horrible realisation dawns. I phone the boss and ask her to check my calendar. Sure enough it’s NEXT Monday I’m meeting my friend for coffee. Another few minutes wasted out of a busy day!
Positive R.A. stuff:
- Racing down the road and my knee didn’t even twinge!
4. Had to take middle-sized cat to the v-e-t this evening. Hubby rang at about 4:30 to say there’s no way he’d be home in time. ‘That’s fine,’ says I, ‘I thought you wouldn’t be.’ I wondered why he was sounding so bothered about it. Then I got home, put MS cat in the box, picked it up and thought, ‘AH! That’s why hubby’s worried.’ I’d forgotten that MSC weights a tonne (approx.)
Positive R.A. stuff:
- OK … it hurt, I can’t deny it … but it didn’t hurt anything LIKE as much as it has done in the past!
So hurrah – what a great day – what a lot of signs that the MTX might be doing its job properly at last!
* Names have been changed to protect the idiot.
Tags: fasting blood test, fibromyalgia, research study, sleep, spiders, stress
Woke up at 5.30 and my iPod (normally life, or at least sanity … or at least remains of sanity saving at this time of day) was out of charge … because I fell asleep with it on last night!
So I crept out of bed so as not to wake hubby up, thinking I might sneak an early coffee and breakfast as he’s on a fasting blood test (more of which later if I get round to it) and can’t have anything until the nurse has been round at half-past-seven.* Of course I instantly woke him up and now he’s up too … so much for that plan.
So I thought I’d charge my iPod and I put my PC on … only to find a small spider running in and out of the keyboard. Fortunately I’m not arachnophobic … unfortunately I’m a big softy and don’t want to squash the damn thing … and arachnaphobic or not, frankly I don’t fancy the idea of it running up my fingers and down my arms … eeeeeeeeeeeooooooo.
Oh yes, and the reason I can’t sleep is that work is really stressful right now …
So this thing about getting enough sleep and avoiding stress … I think I’m having some problems with it right now. Now where did I put those coping strategies … probably somewhere under that enormous pile of work …
* Before you faint at the idea of a nurse coming round at 7.30 (especially Frankie) she’s not NHS – she’s part of a research study … obviously a well funded one! More on that later though.
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: fatigue, lack of sleep, OT, RA, stress, tiredness, vicious circle
Well after my last ‘but feeling OK’ post, I came a-crashing down last Thursday. Just felt awful, dead tired, in lots of pain, the whole shebang. So instead of my usual ‘I’m busy, I must push through this’ approach, I said to myself, ‘you’re the boss Penguin, GO TO BED!’ That IS supposed to be the advantage of being the boss, after all, although usually it doesn’t seem to work out that way.
Anyway, I did that. I got a total of eleven hours’ sleep that afternoon and night, after having had three nights with less than five hours, and while I can’t say I felt like a new penguin on Friday, I felt a heck of a lot better than I had, and I ended up having a very enjoyable and active weekend.
So – I guess this suggests that the OT is right about the vicious spiral and all that, and that I broke the circle/spiral by stooping and resting. Then again … maybe it’s just coincidence. That’s the trouble with RA – it’s so hard to tell!
Oh well – I feel better; that’s what matters!
Tags: arthritis, doctors, flare-up, joint pain, neck pain, physio, physiotherapy, positive mental attitude, RA, Rheumatoid arthritis, stress
So, are my flare-ups related to stress, or not? I thought they were but I hope they aren’t, because if they are I’m in for a big one any time now!
Yesterday I had my first ever row (maybe too strong a word, but very strong disagreement) with a client, on the phone. I was, to say the least, short with them. I was convinced I was standing firmly on the moral high ground as they’d made a bit of a mess of things, and I told them so… only to realise mid-conversation that I’d also made a mistake. While theirs was more serious, it caused an earthquake in my moral high-ground leading to rather a landslide.
It took the rest of the day to try to repair some of that, and to TRY to stop constantly worrying about it, while also trying to get on with some work.
It was all put into perspective somewhat when I got home to find that one of my friends had lost his job, another’s cat had died and a third’s husband had had a stroke!
All in all not one of my best days. I ended it by telling myself firmly that tomorrow WOULD be a better day, and it has been. (Not that that would have been hard!)
As for the RA, I had practically no problems yesterday and although I was pretty stiff on getting up this morning, it didn’t last too long. My neck and shoulders are stiffening up again now, and slightly achy, but that may just be because it’s been over two weeks since I had physio, as my physio isn’t well and had to cancel the last appointment. Employing positive mental attitude to assume that’s what it is, and not the start of a stress-related flare!
Tags: RA, Rheumatoid arthritis, sleep, spring, stress, work
I’ve had a really, really lousy week. Work’s been completely bonkers, I haven’t slept well and I’ve been stressed out of my mind. Funnily enough the RA side of things has been pretty good (not fantastic, but better than for a while!) I’ve noticed in the past that when I get tired and stressed the RA seems to get worse, but now I wonder if I had my cause and effect muddled – the RA was worse, which made me feel tired and stressed.
This time I know it’s work that’s done it, not illness.
I’m having Monday off, that’s THREE WHOLE DAYS OFF IN A ROW! Last time I did that was Christmas, I shall return to work on Tuesday a new Penguin – full of beans and the joys of spring. (OK, so we had hard frost this morning and they’re threatening snow, but hey, the bulbs are string to poke up above the ground, the sun is shining, the crocuses are flowering and tiny cat is starting to go out again – it must be spring.)
Tags: cats, cats and illness, embroidery, Rheumatoid arthritis, stress, tiredness
Having had a wonderful relaxing day on Saturday, I felt full of beans on Sunday and did lots of sorting out and tidying, as well as a thrilling trip (this is sarcasm, for those of you who might doubt it) to the DIY store. Of course I was pretty shattered by Sunday night and no longer feeling the benefits of Saturday. DOH! I really should know better by now.
At least enormous cat and middle-size cat did their best to make me relax in the evening. I was trying to do some embroidery and it involved wielding a huge embroidery frame – the two of them made sure that was quite impossible as enormous cat sat on my lap and middle-size sat on my chest. Tiny cat remained aloof, but I think she was laughing.
The cats certainly do seem to often know when I’m really not well and make a point of coming and snuggling up, but I think this time it was just a case of enormous fancying a lap and middle-size getting jealous!