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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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…

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…

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.

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!

Wow – where did that come from?

June 27, 2016 at 1:38 pm | Posted in rheumatoid arthritis (RA) | 3 Comments
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I haven’t posted for a while because I haven’t really had much to post about – health-wise I’ve been good. I’ve been a bit stiff in the mornings for the last few days, but nothing to write home (or indeed blog) about. Then today I woke up stiff and tired, having had a migraine try to start in the night (successfully stopped with drugs!) I really couldn’t wake up for an hour or so this morning – not literally, I got up, had breakfast, went to work, but felt really brain fuggy. (Can’t blame the methotrexate as I take it Monday evenings and it’s Monday morning!)

Then when I got up to go to lunch, or rather tried to, I started to stand up and ended up collapsed back in my chair. No dramatic pain or anything – I was just so all-over stiff that joints weren’t doing what they were supposed to do! So after sitting a minute or two and flexing various bits (luckily on my own in the office so no one to see how weird I looked) I managed to get up and go for a short walk. I’ve been trying to walk about 1.5 miles at lunchtime but today I didn’t make 0.5 miles! The stiffness did mostly ware off but I was left with significant pain in the good ol’ left knee, where I usually get a flare if I’m going to have one. I’m really hoping I’m not!

Perhaps it’s the stress of ‘Brexit’ – the ‘Wow – where did that come from?’ title could also apply to that and it seems that partially to blame (apart from racists, stupid people and perhaps a handful of people with genuine concerns) may be the polls (as opposed to the Poles, which a lot of East Anglia would like to blame, I’m sad to say). The polls kept saying we’d vote to stay, so people decided that it wouldn’t matter if they had a ‘protest vote’. ‘Let’s vote leave, just so the government can see we’re annoyed with them – we’ll end up staying anyway.’ I’ve actually heard people say it, and then there’s this http://article in the Independent. No doubt people like this thought they were being terribly clever and original, but you get enough people doing the same thing (not that original after all guys) and guess what, we end up voting Leave.

Never mind the embarrassment of waggling stiff limbs about randomly in front of people, I feel embarrassed to be English at the moment! (I would say British but the Scots voted to stay!)

Hopefully the stiffness and knee pain will be a short-term issue. Alas, the same cannot be said for the state of Britain!

A day (or two) in my life with RA

March 23, 2014 at 9:58 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 19 Comments
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This post will be part of the Word Autoimmune Arthritis Day Blog Carnival. WAAD is May 19th 2014 but you can sign up for it now over at the site. This year’s theme is “A Day in the Life of an Autoimmune Arthritis Patient.” I hope I’m not cheating, but I’m going to describe two days – one just post diagnosis and one post-“control” where I am now!

4:00 am A day in March 2008

Wake up hurting – everything’s hurting. My neck and shoulders are very stiff, my back aches, my feet are killing me, one arm is numb and the other has pins and needles going from shoulder to finger-tips – but oddly only the little and ring finger.

Worry – a lot. Come on, I was diagnosed as ‘likely’ are in November last year, and definitely in February  – so how come it’s still not sorted. OMG, what if it never does get sorted? Am I going to end up a wheelchair? Will I cope? Will hubby cope?

And where the heck is that physio appointment they promised me months ago?

4:00 am A day in March 2014

Zzzzzzzzzzzzzzz…..

7:00 am March 2008

Wake up feeling completely un-refreshed and cursing myself for having spent an hour in the middle of the night worrying instead of sleeping. Worry some more as I creak my way gradually out of bed, gently testing bits of me to see how mobile they are. The relief of shaking off the pins and needles and then plunging my hands into warm water is enormous.

7:00 am March 2014

Wake up, blinking the ‘sleep’ out of my eyes. Slight stiffness. Hubby draws the curtains and says, ‘How’s the Penguin?’ ‘Stiff and achy,’ I reply, but then I realise that this is nothing to how it felt a few years ago, really NOTHING, and instantly feel a bit better.

7:30 am March 2008

Take a hydroxychloroquine and a diclofenac and wonder if they’re helping or not. I know I have to wait another couple of months to find out. It’s frustrating!

7:30 am March 2014

Take a hydroxychloroquine and an ‘arcoxia’ cox-2 inhibitor. I had to stop taking the diclofenac eventually after a nasty stomach upset – the arcoxia are supposed to much worse for the stomach, but so far don’t seem to be worrying mine!

8:00 am March 2008

The stiffness is just starting to think about wearing off. My left knee is very swollen and I hobble out to my car using a stick, to head off to work. I’m wondering how I’ll make it through a whole day!

8:00 am March 2014

Stiffness? What stiffness? Did I say I was stiff and achy this morning? Heavens! I’d forgotten. That wore off in about ten minutes.

9:00 am March 2008

Work  – chat to colleague – drink strong coffee – work some more. Try to remember to MOVE because otherwise I freeze into place and struggle to get out of my chair when I need to later.

9:00 am March 2014

Work – chat to colleagues – drink decaffeinated coffee (this change has nothing to do with the RA, but I have rosacea and the symptoms of that are drastically decreased by drinking only decaf coffee rather than ‘caffeinated’), work some more. Move when I want to – it’s not a particular issue any more.

12:00 pm March 2008

Strewth I’m stiff – I got a bit too involved in some interesting work and haven’t moved out of my chair for an hour. Now I’m in the embarrassing situation of needing a ‘comfort break’ rather urgently and thinking it’s going to take me five minutes to un-stiffen enough to get there!

Time for the next diclofenac. Oh no! I’ve left them at home! Mad dash home in the car to get one, and then back to work.

12:00 pm March 2014

Lunch time – get up, stretch a bit, possibly say ‘creak’, which makes my ‘Junior Penguin’ colleagues chuckle, but really I’m quite mobile. Grab a bit of lunch and go for a mile walk – I know it should be longer … and faster … but it’s about what I can manage comfortably in the time I can spare and my knees aren’t right, though much better than they were a few years ago.

Happily no lunch-time tablets any-more – as life-style changes go, this one has had a surprising amount of impact ! I’d really hate to have to go back to trying to remember lunch-time tablets again!

3:00 pm March 2008

Really wondering if I can last until five. If I was on my own I’d be out of here – but I’ve got an employee now and I feel I should set a good example so I stay.

3:00 pm March 2014

Wow – I love this job – time for a bit of a coffee break and then back to some really interesting transcription about language usage … followed, for a bit of a change, by some transcription about sheep diseases! Variety – that’s what I love!

5:00 pm March 2008

‘I’m tired and I wanna go home’ but we’re really busy and I’ve promised someone to get some work back to them this week – I’d better stay a bit longer, even though I feel soooooo tired and achy!

5:00 pm March 2014

I’m outa here – life’s too short! My way of working these days is to delegate or subcontract what I can’t fit in between 8am and 5pm Monday to Friday. I’ve got about 15 hobbies (and one hubby… and friends) and I want time to enjoy them all… especially as, let’s be honest, I don’t know how long I’ll be able to carry on with some of my hobbies, especially those involving a lot of walking or using my hands! I don’t feel negative about it though – things are going well at the moment and I’m making the most of my free time!

6:00 pm March 2008

Still at work.

6:00 pm March 2014

Just leaving a friend’s house. I’ve popped round for a post-work chat and coffee. Feeling pretty fine.

7:30 pm March 2008

Just about manage to get some supper on the table. I only arrived home half an hour ago so it’s ‘oven fish and chips’. 7.5g of methotrexate tonight, with another diclofenac, another hydroxychloroquine and a lansoprazole (stomach settling tablet).

7:30 pm March 2014

We’ve eaten already – I like to eat early and have the evening to play in – especially as I’m usually in bed by 9:00 pm these days – I find an early night makes a huge difference to my general well-being.

Tablets were 17.5g of methotrexate (yeah, it’s gone up a lot but I don’t care – it’s working, and there’s still room for it to go up a bit more … although I do worry sometimes about what happens if/when I’m up to 25g and there’s nowhere else to go  because my symptoms are too mild to get anti-TNFs etc. on the NHS!), and another hydroxychloroquine and a lansoprazole.

9:00 pm March 2008

Getting ready for bed – head still buzzing with what’s happening at work, worries about health, worries that I’m not finding time to do the things I love and speak to the people I love, worries, worries, worries. Heaven knows when I’ll get to sleep. Read a book for a bit to try to take my mind of it.

9:00 pm March 2014

In bed sipping a cup of decaf coffee that hubby’s just made me. Feeling satisfied that I’ve done a bit of Spanish ‘homework’ and managed quite a chunk of embroidery and a bit of crochet this evening, while watching an interesting documentary on the telly and discussing it with hubby later in some depth. Reading a good book on my iPad and feeling very relaxed.

10:00 pm March 2008

Oh no – I really don’t feel sleepy. I’ll read some more and try to relax. ‘Come on Penguin – light’s out’ says Hubby. ‘Just another five minutes’ I say, knowing he’ll be asleep in four and I can carry on reading!

10:00 pm March 2014

Zzzzzzzzzzzzzzzzzz…..

11:00 pm March 2008

Better put the light out. Toss, turn, toss, turn.

11:00 pm March 2014

Zzzzzzzzzzzzzzzzzz…

1:00 am March 2008

At last  … zzzzzzzzzzzz…..

1:00 am March 2014

Zzzzzzzzzzzz…

2:00 am March 2014

Wake up – stiff, in pain, pins and needles – wriggle about until I feel vaguely comfortable, lie awake for 20 minutes and eventually drift off to sleep.

2:00 am March 2014

Wake up – roll over – zzzzzzzzzzz…………….

And so another day starts in the life of Pollyanna Penguin …

My Day with RA

March 10, 2014 at 8:27 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 1 Comment
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This post will be part of the Word Autoimmune Arthritis Day Blog Carnival. WAAD is May 19th 2014 but you can sign up for it now over at the site. This year’s theme is “A Day in the Life of an Autoimmune Arthritis Patient.” My previous post on this is here.

As I said in my previous post, these days RA doesn’t have such a huge impact on my life. In fact I almost feel a fraud posting about it, but there are some little things, and some equally small hints and tips on coping with them, that I can post about.

Other than making sure I take my medication really regularly, I don’t have to do an awful lot to manage my RA but one of the most important things I do is wear orthotic insoles in my shoes. It certainly helps being married to a chiropodist! These insoles have made a massive difference to me over the years. They’re now just a part of life, but if I do have occasion to wear ‘fancy’ shoes or, as I did yesterday, wander downstairs with bare feet without thinking, I soon know about it – and not in a good way! I had painful feet for years before diagnosis whenever I spent a bit of time walking about, and I just assumed it was the pain everyone had when they said ‘Ooh, it’s good to take the weight off your feet!’ It didn’t dawn on me for ages that when I took the weight off my feet they still hurt, and other people’s didn’t!

Another little tip is warm water – warm water is a wonderful thing if your hands are stiff first thing in the morning! I rarely get significant morning stiffness but if I do, plunging my hands into a sink full of lovely warm water really does help. (Hubby will read this and suggest I should do more washing up, I dare say!)

The other major effect RA has on me, and the most difficult one of all to get through to people who don’t understand the disease (including family, doctors, family who are doctors …) is the fatigue! This really is a big problem and the only way I can deal with it is to pace myself and try to keep to a boring routine of early nights and early mornings. (Obviously if late mornings are an option for you, that’s fine – they aren’t for me as I work full time.) People always pull faces and think I’m making excuses when I’m being a party pooper at 9 pm … and maybe they’re right as I’ve never been a fan of parties … but really, an early night and a good sleep makes all the difference to me.

The final thing is flares – even though my arthritis is mild and controlled I still get flares. They’re a fact of life. The hardest thing is to remind myself during a flare that it may seem like a dark tunnel but there IS light at the end of it. It’s ridiculous – every time I have a flare I feel as though THIS IS IT and things will never be right again. After seven years since diagnosis and quite a few flares you’d think I’d be over this but I’ve spoken to other RA sufferers and people who have other diseases that also flare and die down, and many seem to go through the same thing. It’s not sensible but I haven’t yet found a way to avoid it! So if anyone would like to offer me a hint or tip on this, it would be appreciated!  🙂

 

 

 

Hip hip hooray!

August 13, 2013 at 8:45 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 5 Comments
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I’ve just been to see my GP about a very painful hip that’s been bothering me for about four weeks now and getting worse rather than better. (There’s little point in going until one is a few weeks into the pain as they just say ‘Come back if it’s not better in a few weeks’ if you do that!) I had been getting rather low thinking that the methotrexate increase wasn’t working – but in the back of mind I was wondering if it was arthritis at all. When I saw my rheumy nurse for the monthly blood test a couple of weeks ago I mentioned the hip pain and said, ‘Honestly, I don’t think it’s arthritis – I have plenty of movement in that hip. I could dance the can-can if I had the legs for it!’

Still, it’s funny how one’s mind can almost split into two on things like this; (well, my mind can, anyway). One part of me was thinking ‘Of course it’s not arthritis’ while the other part was thinking, ‘Doom, gloom, despair! My methotrexate increase hasn’t worked – there aren’t many options open to me if it doesn’t … will I end up in a wheelchair?’

Anyway, I saw the doc today and she confirmed that it’s NOT arthritis (or at least very unlikely to be, anyway) – far too much movement in the hip. She has referred me for physio for a dodgy ligament (technical term, that!) but the chances are, she thinks, that it’ll clear up in another few weeks by itself – so I’ll just cancel the appointment, because that’ll probably take three months to come through anyway!

The hip pain (and associated other pains including referred pain in the knee) has been making my life a misery and continues to do so. I have to limit the driving I do because it’s incredibly painful – it also affects work, but I’m very very happy it’s (almost certainly) not arthritis … though I would like to know what on earth caused the ligament to get upset because I haven’t done anything to it!

 

How do I not overdo it tomorrow?

January 2, 2013 at 10:33 pm | Posted in Me, rheumatoid arthritis (RA) | 2 Comments
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Today was my first day back at work – knee flare seemed to be pretty much over: the swelling had gone right down, it didn’t feel terribly hot, but it was achy now and then. Hurrah.

However, now the other knee had started to ache – RA, or just a reaction to me walking ‘funny’ because of the left knee flaring? I don’t know – but to add to the mix, today being my first day back at work meant it was also the first day since the holidays where I haven’t spent a significant amount of time with my feet up – and I’m really feeling that this evening, as I sit here typing with an ice pack clamped between my knees, and the heat pack waiting for me in bed!

Here’s the thing though – we’re moving offices tomorrow!

Fortunately hubby has the day off and has been volunteered, slightly unwillingly but with good grace, to be my feet, and the facilities manager in the building is also going to help us lug stuff, and then my two colleagues are both fairly fit … so hopefully I can pull out a conductor’s baton from somewhere and just direct operations!

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