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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Blood test sorted – for this month at least!

January 23, 2019 at 12:28 pm | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 6 Comments
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Incredible – the surgery being polite and helpful! What’s going on?!

I just phoned the surgery to book my annual arthritis review with the nurse, and she asked if I’d had the fasting blood test yet, as should have in advance. I explained that I’d tried but unfortunately I’d been in twice and they’d run out of slots (you have to turn up on the morning, you can’t normally book an appointment.) She explained that half the staff are off sick at the moment and they’re really struggling – I really appreciated the frankness and honestly, and let’s face it, with a combination of the stress they’re under a waiting room full of germy patients every day, it’s hardly surprising!

She said that the best thing to do was come really early and wait outside – which is interesting because that’s something they were VERY strongly discouraging a few years ago and I know the phlebotomist I saw last time was moaning that if people would only spread themselves out a bit  and not all come first thing, they wouldn’t have the problem – obviously no one’s talking to each other again!

Anyway, I pointed out that thanks to my arthritis I couldn’t come and stand outside for 20 minutes in the freezing cold just to try and get a ticket – there’s no seating out there at all and no shelter from the rain.

She then said that if I didn’t mind a really early appointment the nurses were running an early clinic in February to try to catch up. Well – that solves all my problems – no queuing outside, no waiting for an hour to be seen because I’ve got the first appointment, no having to take time out of work time because it’s well before work starts, and no sitting starving because I’ve missed breakfast – because I’ll have had the test before my normal breakfast time.

The only issue for me is going to be remembering about it! Thank goodness for technology. I’ve put a note on my online calendar reminding myself the day before to set up an alarm on my phone and iPad to wake me up half an hour earlier than normal as the appointment is actually at normal ‘getting up time’.

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…

Post-flare milestones!

June 15, 2018 at 10:15 am | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 6 Comments
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I’m feeling pretty pleased at the moment. I think the flare has finally, well and truly gone. I finished the steroids yesterday – or rather I should have done. Mysteriously there’s three left so I obviously took 6 or 7 on a couple of days instead of the correct 8. OOPS!

  1. Anyway, that’s number one, steroids finished!
  2. Yesterday, for the first time since the flare started about two weeks ago, I took only paracetamol (Tylenol) and no Ibruprofen. (Obviously when I say only paracetamol, I also took all my usual arthritis meds, but no extra pain killers except paracetamol.)

Continue Reading Post-flare milestones!…

Another flare and another study

March 6, 2018 at 12:26 pm | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, joint pai, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 6 Comments
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I’m just getting over yet another flare. I had a few days of feeling fine, and then bam, one of those horrible all-over body flares. No individual joint was so bad that I felt the need to visit the doctor or phone the helpline or beg on bended knee (impractical in my case of course) for MORE steroids, but with what felt like every joint in my body stiff and achy, it was a pretty miserable couple of weeks. (Yes, I’m well aware that ‘every joint in my body’ is hyperbole, but it gets you down and makes you feel like that’s what’s happening.’)

I have now started by higher dose (20mg) of methotrexate and taken it twice so far, second time last night. It’s pretty unlikely to have any immediate effect but I’m hoping that it will at least have an effect. We shall see …

Anyway, right now things are relatively good – pretty stiff in the mornings, with some aches and pains, and then it all fades and I’m pretty much OK for the rest of the day … until night-time, which is literally a pain! Continue Reading Another flare and another study…

Do as I say, not as I do!

February 12, 2018 at 4:29 pm | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, joint pai, Me, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 6 Comments
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I’m sure I’ve banged on at least once or twice on this blog about how important it is for the patient to manage their own illness as much as possible, and how important it is to keep a track yourself of your blood test results etc.

Weeeeeell, I’ve had this dratted disease for over ten years now and for quite a lot of those years I assiduously kept track of my blood test results, which never showed anything in all that time. And eventually, what with a change in the system that meant we only see the Rheumy nurse once ever three months, and they stopped issuing booklets with the results in, and given that the results never showed anything, I stopped looking. They’re available to me on line but I just didn’t bother.

So, fast forward to my last flare, not that long ago, a couple of weeks ago in fact, when the doc told me my bloods were up and I said ‘But that never happens’, turns out it happens more often than i thought.

I mentioned in that last post that my hospital appointment had been cancelled, and they originally said the next date was July (!) but then I got a call to say they were putting in a clinic to make up for the cancelled one, and that was last week … so off I toddled dutifully to the hospital. As could be virtually guaranteed, although my knee played up slightly the day before the appointment, it was fine on the day –  thankfully the steroids had done their job! Continue Reading Do as I say, not as I do!…

Good news and bad news … and good news …

January 29, 2018 at 10:38 am | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, crafting, joint pai, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 8 Comments
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Well the good news is that my poor, neglected blog has been poor and neglected since RA Blog Week in September of last year because I have been really well! I’ve had the odd hip pain but only when in bed, which means I never remember to ask the doc about it because when I’m awake, I’m fine! Other than that I’ve been OK. In fact at the beginning of the month my regular 6-monthly hospital appointment was cancelled at the last minute because the doc was sick. The beleaguered receptionist rang to let me know and to apologise and was very pleasantly surprised when I said, ‘That’s fine – saves me coming in on a horrible, foggy morning and waiting around!’ ‘Oh,’ she said, ‘that’s not the reaction I’ve had so far!’ I pointed out that I felt fine and was busy at work and delighted not to have to waste all our time and she said, ‘You’re the sort of person I LIKE to ring!’ I wished her luck with the rest of the calls and that was that.

The following week I had a day off to do a textile workshop, which was great fun. (I was learning, not teaching. My last attempt at teaching was risible and should be enough to put me off teaching a workshop for probably another 10 years or so!) At the end of the day though I had TERRIBLE lower back pain – one of the worst pains I’ve ever had. I just didn’t know what to do with myself. Luckily after an early night it settled in to unpleasant but not terrible lower back pain for the next week or so. The very day after that back pain started I had my regular monthly blood test, which I thought no more about. Continue Reading Good news and bad news … and good news ……

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.

 

Mental stability and RA

September 25, 2017 at 8:19 am | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 5 Comments
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Good heavens – it’s RA Blog week again!

It seems like only yesterday that Rick at RA Diabetes Blog was organising the last RA blog week … I’m not sure where this last year’s gone!

Today’s prompt for RA Blog Week is mental health – well, the reason I started this blog in the first place was partly to keep me sane … but then again, the reason I’ve hardly posted the last few years is the fact I haven’t had major RA problems and I therefore haven’t had the commensurate mental health issues. However, I do believe they are, for me, commensurate and correlated.

I have mentioned before that if the RA is bad then I can’t sleep, and how important sleep is for me. I think this short post about dreaming and sleeping sums up just how important sleep is for my mental health – and if the RA is bad, then the pain keeps me awake and a downward spiral ensues. I remember once when I had a very bad flare, even though I’d experienced equally bad flares before and come through them, I got very, very down with this one and convinced that I was never going to walk normally again, if at all. WRONG, thankfully – unless I’m in a flare I walk without aids all the time – I’m very lucky that my RA is mild and well-controlled. However, with that flare I was getting hardly any sleep, and when I did sleep I was probably dreaming (knowing me) about life in a wheelchair … although at least in my wheelchair dreams my wheelchair is often a flying one so not so bad … but I digress; the point is that’s an example of how the RA, lack of sleep, feeling low cycle can just spiral down and down.

So … how do I stop that happening? Well, there are two main areas to deal with and these are dealing with the RA flare itself and sleeping better. Since there is a Tips and Tricks post coming up later in RA blog week, in which I plan to talk about pain management, I’ll talk a bit about sleeping better here.

I’ve never ever been a good sleeper. As a young teenager I used to love listening to the radio between midnight and 2 am … because even though I was supposed to be asleep I was mostly awake anyway, so why not? I’ve always been one for very vivid and usually completely bonkers dreams, which quite often are not pleasant. I also move around a lot in my sleep, talk a lot, shout quite a bit and am generally not a pleasant person to be with … or to be! But just recently, helped by watching some lectures on sleep physiology and also on chronic pain (even though I don’t have chronic pain, thank goodness) and mostly helped by Hubby deciding he was going to buy some fancy Bluetooth lighting, I’ve found two strategies that really help me sleep.

The first is very simple – blackout curtains! My, what a difference. I was always waking up at 4am or thereabouts in the summer and the light would be streaming in through the not-so-thick curtains and I’d think ‘Gosh, I’m wide awake’ and then I’d be lying there trying to get back to sleep and not managing very well for often an hour or two. Now, having gone through the painful process of making myself some blackout curtains (I HATE MAKING CURTAINS), I no longer have this problem.

The second is the Bluetooth lighting system that hubby got, which at first I thought was sheer indulgence – you can control the lights from your i-Pad? Big, fat, hairy deal (although I did have to admit it was rather fun) – you can also get up and flick a switch, and that’s slightly less lazy… ! But I was wrong, and here’s why.

  1. You can control the ‘colour temperature’ of the lighting, and one of the sleep lectures mentioned that warmer, more orange lighting was more conducive to getting to sleep while cooler, more blue lighting was energizing and waking.
  2. I can now set the light in my bedroom to gradually dim from normal brightness to ‘nightlight’ over about half an hour.

So half an hour before I think I should be trying to sleep, I turn my warm light onto the gradual dimming program and by ‘lights-out time’ the light is very nearly out ,and so am I. Honestly, I feel soooo sleepy at that point most nights and I’m … well, out like a light. This really was never the case before – normal for me would be falling asleep half an hour to an hour after the lights went out.

As I said before, good sleep and mental health are inextricably linked for me, so this is a massive help. I am also finding that with better sleep (and other things like Pilates, and consciousness about the position/posture I’m in etc.) I’m physically healthier too, so it’s a win-win … kind of an upward spiral I hope, rather than the downward one I mentioned earlier.

Blinking knee again!

July 26, 2017 at 9:01 pm | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, joint pai, Me, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 6 Comments
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Sorry – not my most inspirational blog post title, but I’m not feeling very inspired!

My knee has been playing up for a couple of weeks now – mostly the left one, as usual, with the occasional twinge in the right. At first I thought it had nothing to do with RA because the pain was in a different place – behind the knee, not to the front-right as ‘normal’, and there wasn’t much swelling … but over a couple of weeks the swelling has increased a lot (in its usual place) although the pain remained mostly behind the knee. My Pilates teacher (still loving the Pilates by the way) suggested it might be a pain caused by hyper-extending the knee, which I am prone to do, so  I spent a week very consciously NOT hyper-extending the knee and then realised that, given it was always significantly worse in the morning, and that it now involved significant swelling and  greatly reduced mobility, it was probably just good old RA again. So, today I plucked up the courage to phone the doctor. (It takes courage these days, believe me!)

It seems that the receptionists have now become triage nurses! I was not impressed. We used to get ‘Can you give me some indication of the problem if it’s not personal, so I can let the doctor know’ which was a reasonable request in my view. Today I got, ‘Can you give me a brief account of the problem please.’ Well it wasn’t personal so I said, ‘Yes, rheumatoid arthritis.’

‘Oh, you want pain relief then?’

‘No, it’s a bit more than that, I’m having an RA flare.’

‘Have you seen a physio? Do you think that might help?’

‘No, I don’t think so. I’m having a rheumatoid arthritis flare and I need to speak to a doctor.’

‘Oh … OK then …’

I actually wrote to the surgery via their contact form and told them what had happened and asked what training the receptionists, being non-medical staff, had if they were now supposed to be triaging to this extent. I said that I felt it was inappropriate and that the comments suggested a lack of understanding of the difference between RA and OA. I haven’t had a reply and I don’t expect one.

The doctor eventually phoned back at 11:30, meaning it was too late to go for the blood test that I should have gone for today, because you have to be there before 11! I explained the problem with my knee and he asked how long this flare had lasted. I explained that it’d been a while because I hadn’t twigged it was RA at first due to the pain being in a different place.

Now … this my American friends may find hard to swallow, but here goes … he asked about pain relief and I told him I was alternating paracetamol (Tylenol) and ibuprofen and it wasn’t cutting the mustard. He wondered about codeine and I said no (for stomach reasons). I asked about steroids and he said no, not yet, because ‘they can be problematic’ and then prescribed me a great big box of opioid pain relief tablets (meptazinol), 60 of the things! He said to try them out because if they helped it would be useful to know there was something else in my arsenal, which is true … and if they didn’t work, to come back next week and they would have me in for an examination and consider steroids … because all this was done over the phone.

So while you guys in the US can’t get an opioid for love or money now, or not without jumping through a million hoops, I just get handed 60 over the phone with a comment on the lines of ‘Don’t use them all at once. They’re only short term.’

He told me that the prescription would be with the pharmacy ‘in five minutes’. Luckily I took this with the pinch of salt it deserved because when I went to the pharmacy 1.5 hours later it had only just arrived!

Now he was probably, very sensibly, thinking ‘She’s had this two weeks, her flares rarely last even this long, it’ll probably be over in a few days and the pain relief will provide just that, relief, while it’s on its way out.’ And if he was thinking that, full marks to him because he’s probably right.

However, there’s a nasty, suspicious part of me that thinks even though the surgery says any comments and complaints won’t prejudice your treatment, he’s seen the comment I sent in and is thinking, ‘If I give her pain relief first, it makes what the receptionist originally said right …’ That’s probably nonsense – I’m prepared to admit to a tendency to be paranoid… but with the world going to pot in the way it seems to be at the moment, who knows!

I do have some comfort in the fact he’s a doctor I’ve seen before (actually face to face seen, a miracle these days) and do actually have some respect for, partly because I felt that he treated me as an intelligent person … so it’s far more likely he’s just easing me out of a flare with much reduced pain – and it IS much reduced. Of course it’s done nothing at all for the swelling or the lack of mobility in the joint, but it’s great to be relatively pain free and we’ll see how things go in the next few days.

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