Flare! Out of a clear blue sky …

April 25, 2019 at 1:12 pm | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, joint pai, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | Leave a comment
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I’ve been doing well for ages – hence the quietness on the blog – nothing much to say – and suddenly BAM, out of the blue, I woke up yesterday morning with my usual left knee flare. Actually weather-wise it wasn’t such a clear blue sky – we’d had a few beautiful days and yesterday was a bit dull, but nothing dramatic.

I had been having more than the usual twinges in my hands and feet the last couple of weeks, but although it was a bit above the norm it was still only twinges and nothing to write home about. Then yesterday, pooof – VERY painful knee.

I had a very bad night’s sleep last night, partly because my sleep is definitely not normal in that I move a lot while asleep – and every time I moved I woke up going ‘OUCH!’ … or words that that effect, and partly because I was thinking oh, no, there’s nothing else for it, I will have to call the doctor in the morning.

Those of you who’ve read this blog a bit before will be aware that, while appreciate that it’s ‘free’, I’m not a big fan of the way the NHS is run, and our local surgery in particular, and I was literally dreading it. So how did it go? Well, I’m glad you asked. Are you sitting comfortably? Then I’ll begin.

I phoned at 8:30 when the phone lines open and got a message saying ‘You are fourth in the call queue – please hold …’ etc. I was expecting more like ‘You are number 47 in the call queue’ so that was the first of several pleasant surprises!

Then when I got through a receptionist answered I was ready to do battle to actually speak to a doctor – not for instance ‘It’s arthritis? I’ll get you a physio appointment’ etc. Yes, the receptionists triage. It’s quite mad, but there we are. Anyway, I said without thinking that I was having an RA flare and got ‘A what, sorry?’ But that was fair enough. When I said ‘A rheumatoid arthritis flare’ that was obviously something on her crib sheet. ‘I’ll see if anything’s available this morning.’ Bloody well better be, I thought, but held my peace!

‘Oh, I’ll have to get a doctor to ring you’ she said in some surprise. No doubt she heard ‘arthritis’ and initially went down the physio route I’ve bumped into before, but this time they’ve sorted themselves out and can spot the difference between osteo and rheumatoid arthritis. (Not that I’m suggesting a doctor shouldn’t see you for osteo, but they certainly SHOULD for rheumatoid!)

So I waited for the doc to call me back – and he did, within half an hour, and one of the senior partners who I rather like at that. I explained the issue and he said, ‘You’d better come in and we’ll see what we can do. Can you get in for 9:30?’ I said I could and he said ‘I’ll book you in with Dr Smith.*’ I nearly groaned aloud. ‘Is this the same Dr Smith who was a locum a few years ago? I know it’s a common name, but if it’s the same one … I won’t see him!’ (That was some twit who was exceedingly pompous, upset all the patients and nursing staff, ran hours late and told me I’d sprained something when I obviously hadn’t!) He sounded a bit puzzled and said ‘I doubt it – he’s a partner, and he’s very good. He’s not been with us that long.’ I said in that case that was fine then, and toddled in for 9:30.

The checking in system said there were three people in front of me and a 28 minute wait – my heart sank ’cause that reminded me of Dr Smith the first, and I thought oh no, perhaps it is him! It wasn’t …. and in fact the wait was only about 20 minutes which is fine. I always say I don’t mind waiting if it means the doctor is providing enough time for each patient and someone else needs that time … if it we me, I’d want a decent amount of time, thank you!

When I went in I felt instantly (mentally) better – it was VERY OBVIOUSLY a different guy. I won’t go into physical  characteristics but let’s just say Tweedledum versus a stick insect, and quite an age difference too – clearly a different guy. He was very pleasant indeed; he listened to what I had to stay, accepted that I knew my own condition pretty well, examined my knee carefully and asked sensible questions. Good heavens, I thought, have I slipped into a parallel universe?

Then he spoiled it all by saying, ‘I think we’ll try you on some stronger pain killers first.’ My heart sank – nooooooooooo, I remember last time that happened – I had opiods just when the big ‘No opiods’ thing was going on in the States – and they didn’t even TOUCH the pain! But I plucked up the courage (OK, there wasn’t much courage necessary as he was such a nice man), to say ‘I was really hoping for steroids because so far they have ALWAYS worked!’

He smiled and said ‘OK, if that’s what you want to try that’s fine. Come back in five days or so if it hasn’t worked and we’ll investigate further.’ Back into parallel universe territory again. And best of all <insert happy dance emoji here, although only a mental happy dance as my knee isn’t up to a physical one> he PRINTED OFF THE PRESCRIPTION.

‘Eh,’ I hear you cry. ‘So what? What’s that got to do with the price of fish, penguin?’ Well … they had what they (the doctors) thought was an all singing, all dancing IT system at one point. The patients, nurses, receptionists (poor things), pharmacy and nursing staff all saw it for what it was but the doctors took a while … they used to press a magic button on their computers and say, ‘There – it’s automatically gone over to the pharmacy. You can pick it up straight away!’ Only you never could! My longest wait was five hours from time of appointment to getting my steroids, and that was only because I effectively staged a sit-in at the surgery until someone printed off a scrip for me, just before they were due to close!

So anyway, I took my beautiful, green, shiny (OK, not actually shiny) printed slip over to the chemist and waited about five minutes, if that, and came home with my beautiful, white, fairly shiny steroids, of which I have taken the first dose.

I already feel better … but whether that’s the lifting of the stress of thinking ‘I have to phone the surgery’ or the steroids or the fact I had an hour resting with my leg up earlier, I’m not sure!

Here’s hoping it’s all better soon – and I hope, you, dear reader, are keeping well and flare free!

 

* Not his real name – did you guess? It was however a very common name.

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Pride goes before a fall … ouch!

February 22, 2019 at 11:56 am | Posted in arthrits, joint pai, Me, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 6 Comments
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I was just doing some snowdrop lifting (sounds a bit like sheep rustling but it isn’t!) in preparation for an art class tomorrow and I managed some penguin landing instead – crash landing!

Luckily I’m mostly fine – slight twinges in all the diodes down my right side, to misquote Douglas Adams, but certainly nothing broken or torn or, I think, even sprained. I have a horrible feeling I’m going to be stiff as a board tomorrow though- in muscles as well as joints, so an hour’s drive to the art class isn’t ideal … but I do at least have the snowdrops ready to paint when I get there!

It did make me think though … about pride coming before a fall! I should have swallowed my pride and asked hubby (who hates gardening with a passion) to do the digging for me, or at very least have waited until he was in the house before doing it. There I was, outside on a freezing cold morning (the sun had come out and fooled me into thinking it was going to be warmer), and I missed landing on the prongs of the fork (upturned in exactly the way they should NEVER be … but they were) by mere inches! Things could have been a whole lot nastier than they are.

A dear, elderly friend died this week and I’ve been blathering on about how her husband (and possibly also my mother) really ought to have panic buttons that link through to emergency services or something similar, for occasions just such as this, since they’re on their own, and then I go and have a tumble when I’m on my own – and I could have just waited until hubby was home. Silly Penguin!

So while I’m on a misquote roll, (pride comes before a fall is probably a misquote of the biblical ‘Pride goeth before destruction, and a haughty spirit before a fall’), I should also practice what I preach (misquote of ‘… do not do what they do, for they do not practice what they preach,’ from the Gospel of Matthew apparently …

Perhaps I should have made that a new year’s resolution, since I find myself also thinking a lot about (if not generally preaching about) cutting down on plastic use, but fairly dismally failing to do so as yet. ‘Must try harder!’ to accurately quote most of my school reports!

My personal sleep study results

July 3, 2018 at 11:25 am | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 2 Comments
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So … how long have I been saying, ‘I really must post about that sleep study I took part in?’ Well, for over a month, since I got my results back from Katie, who’s running the ‘QUASAR’ study at the Arthritis Research UK Centre for Epidemiology in Manchester. Oops – bad Penguin!

Why QUASAR? A slightly convoluted acronym for ‘Quality of Life and Sleep in Rheumatoid Arthritis’. (Also a large celestial body, characters in the Marvel comic universe and another study, in cancer – but those are not relevant here!)

I’ve talked about the study in a few places before, here,  and here  and in passing here  … the latter just proving how woefully slow I am at getting around to blogging. But now I’m finally going to talk about the initial, personal results that Katie has sent me.

First of all, here is a week’s worth of data showing correlation (or lack of it) between amount of sleep and symptoms.

Continue Reading My personal sleep study results…

Hobbies

September 28, 2017 at 6:03 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, crafting, Me, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 10 Comments
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Heavens to Murgatroyd, the woman with more hobbies than days of the year nearly forgot to write a third annual blog week post with the prompt hobbies!

Well, where do I start? I’ve done ‘crafty stuff’ since I was a tot, especially needlework. I can remember learning to sew a simple picture in pale green cotton on a slightly darker green background (fabric that I think was part of the ‘Daisy suit’ I had when I was four … and I can’t have been much more than four when I was sewing that picture). I haven’t stopped since really. On top of that I love to crochet, I do botanical painting/drawing, I’ve recently started making felt (and even taught a class on it recently … don’t ask, just don’t ask … I think I have to do that about once every ten years to remind myself that it is NOT my vocation!), I read a lot and I’m learning Spanish. I love to go for walks in the country, I’m very interested in entomology and especially plant galls, but natural history in general and … I write a blog … about once a year for Annual RA Blog Week!!

I’d say all my hints and tips from hints and tips day earlier in the week also apply to ‘managing’ ones hobbies, and I have to say when it comes to pacing yourself I kinda fail … well, with this many hobbies how the heck am I supposed to pace myself? I mean really … BUT I do try (with some gentle nagging from hubby) to stop doing whatever crafty thing (or painting thing or Spanish thing or natural history thing) is occupying my brain by about 9 pm each evening so that I have an hour to wind down before I go to sleep; and I do try really hard to pace myself at least by saying if I’m, for instance, going on a felting workshop one weekend, I won’t do a painting workshop the weekend before or after. (Epic fail on that this last month, but never mind – I had a ball on both weekend workshops!)

RA has slowed down or almost stopped some of my hobbies – crochet is the biggest problem. Just last year I worked on, and completed, a big project crocheting a waistcoat (vest to those across the pond) which went brilliantly, but this year I’m finding my hands just won’t put up with hours at a time of crochet, so I’ve been concentrating more on other things – hey, no shortage of those … especially as I also work full time! The other one is going for walks – I still do, and I still love it, but walks have to be either carefully planned (so that I know I can stop and sit) or just short! On the whole they’re short! Luckily we have three beautiful nature reserves close to where we live so we have a good choice of walks – even though one of the reserves is the size of a postage stamp. Some of the hand sewing I really enjoy has slowed a bit too – I certainly do less of everything than I used to … maybe fatigue … maybe just age!

I love all of my hobbies and I’m very grateful that I haven’t had to give any of them up altogether. Having hobbies keeps me (relatively) sane and takes my mind off both work and health problems. In fact painting (when it’s going well) is like a good meditation – I just forget about the world and focus on the painting and can get lost in it for an hour or two and wonder where the time has gone. I find all my hobbies relaxing (unless I’m trying to teach them) and fun, and I think having fun and relaxation in life is vital to keeping things balanced and happy. I’ll never be a master of anything because I’m too busy having fun being a Jack of all trades, but that’s just fine by me.

 

On the Third Day Before Christmas…

December 23, 2016 at 5:16 pm | Posted in Me, rheumatoid arthritis, rheumatoid arthritis (RA) | 10 Comments
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On the third day ‘fore Christmas my Arthur gave to me, a bad pain in my left knee.

On the second day ‘fore Christmas my Arthur gave to me, two swollen ankles, and a bad pain in my left knee.

Actually, to be strictly accurate, yesterday it was a bad right ankle, but that didn’t scan! Today’s verse is completely accurate, unfortunately. I had recovered nicely from the last flare after a few days, only to go down with a short, sharp and rather nasty stomach upset that put me in bed for a couple of days. This week I’ve been mostly OK, if a little stressed at work, and then suddenly on Wednesday everything at work went right, and I was unexpectedly able to finish for Christmas that afternoon – so hubby and I had a day out at Wells-Next-the-Sea on the North Norfolk coast. It was a glorious, sunny day – if rather cold – and we had a lovely time, except that as we were walking down the high street, suddenly I wasn’t … walking that is … or having a lovely time for that matter. I had a sudden and completely out of nowhere pain in my right ankle.

‘It’ll go in a minute,’ I said cheerful. ‘These sudden ankle pains always do. Let’s pop into this bookshop and get out of the cold while it gets better.’ Several minutes later and £20 lighter, the ankle hadn’t got better … although I had gained a rather fun read and got a little pressie for hubby too. So we walked (I hobbled, hubby walked) down to the harbour and had fish and chips while we waited for the ankle to mend … and it did … or so I thought. We had a lovely walk down the harbour wall but decided not to risk going the whole way (it’s a mile each way) in case the ankle went again. The sun shone, the lapwings called, the gulls squawked, the starlings sang beautifully in the hopes we’d feed them chips, and all was delightful.

Then when I got home the ankle started to twinge again. ‘It’ll be fine by the morning,’ I said confidently. (I don’t learn, do I?!) This morning it wasn’t terrible but it wasn’t good. This afternoon I decided to have a bath and see if that helped. It didn’t. By the time I got out of the bath BOTH ankles were flaring and I had knee pain too. And that’s where I’m at now.

On the bright side, I finished a felt picture I’ve been working on for a while and the hair dresser is coming soon so I can look slightly nicer than usual (not hard) for the first day of Hanukkah and then Christmas Day (aka 2nd day of Hanukkah this year), so it’s not all doom and gloom.

Happy Holidays everybody!

RA Blog Week Day 3: Advice

September 28, 2016 at 2:25 pm | Posted in rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 8 Comments
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I’m taking a ‘wildcard’ option today. The topic is ‘Biologics’ but I’m still on good old methotrexate and likely to remain so unless things get much, much worse, because biologics aren’t an option for mild RA in the UK. So there are two wildcard options – depression and advice. I don’t suffer from depression although a flare certainly makes me low and grumpy, so I’m going for advice.

What advice can I offer people who’ve just been diagnosed?  Well, off the top of my head, here goes. I’m sure there are many more sensible things I could have said if I’d been more organised about RA blog week – but this is me!

  1. DON’T PANIC!Perhaps I should display this in ‘large, friendly letters’ across my blog, a la Hitchhikers’ Guide. 
  2. Listen to your doctors and nurses, but don’t assume they know it all. (That’s for them to do and they usually do, but it’s not the case
  3. DON’T PANIC specifically about the side effects in medications. Most people don’t have any side effects. You might be lucky, you might not – but if you don’t try, you’ll never know. I’ve been lucky and had only the most minor of side effects, or none at all.
  4. Get advice from the RA community – local support groups, online support groups (such as Health Unlocked in the UK) and local or national charities e.g. NRAS in the UK, who I have found extremely helpful.
  5. Use what aids you need – and find out what aids are out there that can help you.
  6. Don’t be embarrassed to tell people about your RA and to use aids. Amanda John has written some terrific stuff over the years about dealing with embarrassment – or sometimes failing to do so.
  7. Find ways to deal with people – This can be HARD! Most people will be curious, many will ask stupid questions and even more will offer completely useless advice about their aunt’s cousin’s daughter’s dog who had RA, ate some honey and got better. It won’t help you to give a snappy answer, although it might feel good at the time. (I learnt this the hard way.) At the same time, try to find a quick way of explaining RA – true friends will listen to you harp on about for hours; the more acquaintance-level ones are understandably easily bored!
  8. Read blogs about RA – but remember everyone’s experience is different. Just because Carla, author of the terrific Carla’s Corner, has had to have multiple ops, doesn’t mean you will. Just because Wren has days when she can’t turn a page without pain doesn’t mean you will. But when you want support and advice the RA blogging community is a great place to be!
  9. Pace yourself! This is so hard! Fatigue is a big part of RA for a lot of people. ‘Pushing through it’ and ‘carrying on regardless’ DOES NOT WORK! You need to pace yourself. I frequently refuse to arrange to do something Sunday if I’m already busy Saturday – or vice versa, and I am pretty strict about keeping my work hours to a standard working week.
  10. Consider writing a blog. As you can tell from some of my more moaning efforts, it’s cathartic! It also puts you at the heart of the great RA blogging community, allows you to find new friends who really understand and empathise with what you’re going through, and allows you to moan at the blog sometimes if you feel you’re overdoing complaining to your loved ones!

RA Blog Week Day 2: Active or Reactive Patient?

September 27, 2016 at 10:20 am | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 1 Comment
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Well, what a dismal excuse for a blogging penguin I am! I completely forget that yesterday was day one of RA blog week. I guess this makes me a reactive blogger, or at least definitely not an active one, but now it’s day 2 and we’re discussing active versus reactive patients. Well, I’d like to think I’ve been an active patient from day 1 … that’s what I’d LIKE to think … and indeed I was already looking into RA and researching it before I was diagnosed, because the GP had suggested it as a possibility and I wanted to find out more. Pretty active, eh? Maybe too active? Maybe I was filling my head with RA concerns and worries, and RA symptoms that I might then convince myself I had?

I don’t think that was the case though – I think it’s important to know as much about the disease as possible, as soon as possible – although having said that, there’s so much info out there of, shall we say a less positive nature, that it can be pretty scary! It’s important to remember that most people with only mild RA, such as myself, have other things to do than write about the fact that they’re actually pretty OK most of the time and have nothing much to say! Consequently the really useful and important blogs out there, and other patient inputs, such as the Health Unlocked network, are written by patients with serious problems and severe RA.

Nevertheless, I was active from the start, partly because it was such a relief to have even a possible diagnosis, after years of odd symptoms that had doctors scratching their heads and trying to tell me I was depressed. (I know depression, I’ve lived with people with depression, I have friends with severe depression … I can recognise it, and I’ve never been depressed in my life.)

Having said all that, it’s hard to remain an active patient, I find, once you’re a number in the NHS health system. It’s hard to keep going and pushing and demanding what you’ve already been promised but aren’t getting, when you’re already feeling at a bit of a low ebb on the health front. It’s hard to put up with appointments not when you need them but when the hospital feel like fitting you in, and with nurses who clearly don’t care. Even harder when you read about the system being hailed as a paragon of virtue in the US. The IDEA of the NHS is fabulous – the ideal is spot on – the actual working is a bit of a disaster, sad to say. There are times when I go along to an appointment with no more active thought in my mind than, ‘Let’s get this over with for another six months to a year.’

Having said that, I think I’m still pretty active. I’m still prepared to fight with the GP for a steroid shot when I’m darned sure that’s what I need … and I’ve been proved right so far. And I’m still interested in the disease from a standing back and looking at the biology, being fascinated with the latest research and possible cures on the horizon point of view.

I think this is a rather different picture of the ‘active patient’ than the one painted by many of my US blogging friends. The US health system is as badly flawed as our I think, but in very different ways. IF you have got health cover and can maintain it, you’ve probably got a relationship with your rhemmy doctor and can see them when you need it (or within a few days not a few months). If you go in with a list the doc is impressed whereas here they just roll their eyes and groan. But fundamentally to my mind an active patient is one who takes control of their RA as much as possible, and not just on the purely medical, drug-related, front, but also doing what we can to control it and minimise impact – such as exercising whenever possible, eating sensibly etc.

Why haven’t I talked more about that? Because I’m a bit rubbish at it! I have been trying to get a 1.5 mile walk in at lunchtime though – sometimes it’s only 1 mile, sometimes it’s half a mile, but at least I’m trying! As to eating … let’s not go there in this post. It’s something I do rather too well!

 

Two steps forward, one step back…

July 12, 2016 at 2:28 pm | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 10 Comments
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Well, yes, the knee flare was completely over … for a few days. I was just getting back into the swing of things, gradually building back up the length of my lunchtime walks from a few hundred yards to half a mile, to three-quarters of a mile … thinking I’d soon be back to the mile-and half … and then I woke up in the middle of last Friday night thinking ‘Ouch!’ I’m telling myself it’s not really flaring this time … I haven’t decided yet whether I’m lying to myself.

I certainly don’t want another dose of prednisolone just yet… if they’d even give me one, which I doubt. Having said I never have side effects, Carla happened to mention that sleeplessness and irritability are major side effects of pred, and guess what… I had a really sleepless and irritable week while I was on it – I just failed to attribute it to the pred. Now it all makes sense. And OMG, the night sweats!! I had no idea that was a side effect and I get hot flushes anyway so I just thought, ‘Coo, bad hot flushes, much worse than usual!’ I was slightly worried that this was more than hot flushes as the ‘sweats’ part was a whole lot more dramatic …again, I hadn’t realised this is a common side effect of the pred.

Now I’m still ALL for the steroids – the side effects, now I realise  that’s what they were, were horrible, but the flare was much, much worse. The side effects I personally experienced were definitely the lesser of two evils and the pred let me carry on with my life and work, which I couldn’t have done without it. However, having said that, it does make the thought of another does quite unappealing if it can be avoided.

This time round the knee’s not hot, it’s not especially swollen and it’s not actually madly painful … it’s stiff but bendable, so really quite different to the definite flare I recently experienced.

Remember those knee-strengthening exercises I was doing, so that if I flared again I would have strength in the surrounding muscles and hopefully come out of it faster? No? Well you wouldn’t because I forgot to post about them. Unfortunately I have also forgotten to do them for the last few months, which is a pity really because I suspect that’s what the problem is now. As a horribly unfit person, having a bit over a week practically off my feet  means I do need to build up those muscles etc. again and I think the minor pain and stiffness I’m experiencing is probably all about that.

So, spend goodness knows how long fighting for a doc appointment, to be told, if I’m lucky, that they’ll refer me to physio, which will take six weeks minimum, by which time I hope I’ll have recovered anyway, or just carry on and hope? I’m going for the latter at the moment. Wish me luck!

The frustrations of not having a relationship with your doctor

June 29, 2016 at 4:32 pm | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, joint pai, Me, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 7 Comments
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Thanks to the state of the NHS today (which, if you read this blog often you will know I harp on about endlessly) it is simply not possible to have a relationship with your GP these days (unless you’re incredibly lucky or live on some tiny island that actually has its own GP or something!) My GP practice has around 10 GPs plus locums. It’s pot luck who you get to speak to when you call and they phone you back, and then if they decide you should be seen you won’t see the person you spoke to that morning.

It also seems that they don’t have much of a relationship with the hospital and seem to have some sort of mythic belief in the power of the rheumatology helpline, as I’ve also mentioned before.

The myth

The patient calls the GP because they have an RA flare. This is a shocking waste of the GP’s time because these lucky, .lucky patients have an RA helpline that they can call and that will solve all their problems. They can speak to a lovely nurse* straight away and the nurse will wave her magic wand, waggle her magic pixie ears and solve the patient’s problem.

* Actually that’s the only true bit – the one we have at the moment IS a lovely nurse!

The facts

The lovely nurse, or even a secretary or receptionist, never EVER answers the helpline. It is an answerphone. That’s the way it’s set up. It’s not an answerphone on odd occasions when they’re exceptionally busy, it’s ALWAYS an answerphone. The message on the helpline says something like: ‘If you’re calling about a non-RA related problem, please call your GP. If you’re calling to change an appointment, please call reception. If you’re calling about an urgent need, please call your GP. If you’re calling to buy fish, please contact your fish monger. If you’re calling to moan about Brexit, please contact your MP. If you’re calling because you’re a moron, voted ‘Leave’ and can’t work out what a helpline is for, please call someone else and bother them. Now, if you really, really want to leave a message, we suppose you can. Give us your hospital number and name and telephone number and we’ll try to call you back in 24 hours – but no promises mind.’

I don’t know about you (actually I probably do, if you have RA) but I consider a flare pretty urgent.

While in an ideal world I would sit back on a couch, watch the telly and let my servants feed me grapes while I rested my knee and waited to see if it would clear up on its own, I do actually have a life (and no servants, and hubby is great but also has a life, and the cat just ain’t interested in helping), so I can’t just sit about and rest it. On that basis I can’t wait potentially 48 hours or more for the helpline to phone, and the nurse say, ‘Call your GP and get some prednisolone’ because then I can’t call the GP until Monday  as 48 hours is Friday morning and by the time I’ve heard back from the helpline the GP has run out of appointments. By that time I will have been flaring for over a week!

What Polly did Next

So … I went to the appointment grudgingly granted me by the grumpy GP. (Ooh, nice alteration that penguin!) Fortunately it’s with a much more pleasant locum GP than the one I spoke to on the phone. Unfortunately of course she doesn’t know me from Adam (or strictly speaking, as a doctor, she can probably spot I’m not Adam from the wobbly bits, so I should say she doesn’t know me from Eve). This means that she doesn’t know if I’m a moron or not, and therefore has to assume I am, as we always have to cater for the lowest common denominator.

‘How can I help you?’

‘I’m having an RA flare in my knees, as usually particularly in my left knee. It’s stiff, not very flexible and painful at times.’

‘Have you called the helpline, because really -‘

‘Yes.’

‘Oh, and what did they say?’

‘I said I’d called them, not that I’d spoken to them!’ I then explained, gently, ’cause she was a locum and therefore wouldn’t necessarily know any better, the realities of the helpline. (I didn’t mention Brexit or fish mongers.)

‘Hmm, you had a blood test only yesterday and your bloods were hardly elevated at all.’

‘They never are.’ The mere fact that my bloods are even a smidge elevated is a pretty strong indication of a flare with me. Sometimes I flare and there’es no indication whatsoever in the bloods. Now this is where a doctor relationship would come in handy. If she’d actually known me, known that I’ve had RA for nearly ten years, known that I’ve had umpteen flares in my left knee, known that blood tests are not a helpful indicator with me, known that I have a brain, we could have skipped the pointless bits, more of which are coming up.

‘Ah, well let’s have a look.’ Prod, poke.

‘Aaaaaaaaaaaaaaaaaaaaaaaaargh!’

‘Did that hurt when I pressed there?’

‘No, I just thought I’d make screamy gurgling noises for fun.’ (Nope, I didn’t really say that either, I just said yes.)

‘Can you bend it?’

‘This much.’ Demonstrated a very slight bend.

‘Ah. Have you tried pain killers… like paracetamol?’

I’m afraid I just looked at her and laughed, finally managing to choke out a ‘yes’, followed by ‘interspersed with ibuprofen.’ She looked amazed that I’d been able to think of painkillers all by myself.

‘Well I’ll prescribe a course of steroids. Now if they don’t work, we’ll have to consider other possibilities like osteoarthritis, as they should work for RA.’

‘Well, they’ve worked every other time I’ve had them, so touch wood that they will this time too.’

‘Oh … right.’ Look of mild astonishment, either that I’d had them before (it’s in the notes dear) or that I actually knew that I’d had them before, who knows.

So I thanked her very nicely, ’cause I’m a well brung-up penguin … and I might run into her again, and off I went to the chemist to get my steroids.

Again, after nearly ten years of RA, I think I recognise an RA flare when I see one … I really hope I’m not proved wrong and that the steroids do work again this time and it doesn’t turn out to be OA. That would be sooooo embarrassing after this post!

Really hoping to get a full day’s work in

January 26, 2016 at 3:13 pm | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, rheumatoid arthritis, rheumatoid arthritis (RA) | 3 Comments
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Well the knee is certainly a whole lot better and I’m now tapering off the steroids – I ended up with 11 days on 40 mg and then a taper down to nothing. The bad news is, not surprisingly, it’s not 100% better yet, and so far I haven’t managed a full day’s work since this started. Fortunately (not from a financial standpoint, but otherwise) we’re not that busy right now. I’m not too worried as that’s often the case in January and there are things simmering away that should come in over the next few months, and it does mean that if I just can’t manage a full day then so be it. At least the boss can’t get cross with me! (Having said that, I’m probably my own harshest critic, so I guess I can get cross with me!)

On top of the whole knee thing, yesterday I had what was pretty much certainly a full-blown methotrexate-related stomach upset, so I’m very glad now that I’m going on the injected stuff in a couple of weeks! Feeling OK today, if a little tired, but I was a complete wreck for a while last night – thank heavens for Imodium is all I can say!

Still, even if I don’t last all day today at work, I’m confident that I’ll be doing so by the end of the week, so things are on the up! I hope things are going well for all of you too.

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