Sleep and sleep study update

April 4, 2018 at 9:30 am | Posted in rheumatoid arthritis (RA) | 8 Comments

Well I’m at day 22 (I think) of the 30-day sleep study. It’s been interesting for me to monitor my sleep and I do hope I get to see a week’s worth of data from the fit-bit equivalent thingy I’m wearing, as the study coordinator mentioned this should be possible. At the moment I’m monitoring how I THINK I slept each night and also how I feel each morning and evening. What I’m intrigued to know is if I did sleep how I think I slept. For instance on some days I feel in my ‘sleep diary’ and say I woke up seven times in the night and was awake for around half an hour in total – but what does the fit-bit thing say? Does it agree? Did I fool it into thinking I was awake for hours by tossing and turning in my sleep, or did I fool it into thinking I was asleep and didn’t wake up at all because while trying to sleep I lay still? Or is it way too clever to be fooled by such things. I have no idea but I hope I get a chance to find out!

It’s also been interesting to realise that while ‘good sleep’ is considered by sleep experts to be 7 or more hours of UNBROKEN sleep, I NEVER EVER IN A MILLION YEARS am likely to have one night of that! A fantastic night’s sleep for me was two nights ago when I fell asleep about 10, only woke up a couple of times before 10:30 and then slept right through until 4:30 am. I think that’s probably a record for me! Normally I fall asleep about 10:15 and wake up something like 10:30, 1:30, 4:30, 5:30 and a few more odd times in between. During the whole night I might not be awake more than 10-15 minutes, but this is still disastrous, so sleep experts say, because I’m not getting the requisite number of sleep cycles and a suitable amount of REM sleep. I’m probably functioning well below par brain-wise, and I know I often have quite poor concentration and attention span compared to the days when I slept better …

Having said that, seems to me I must be getting plenty of REM sleep because that’s when you dream, and boy do I dream! Salvador Dali would have loved my dreams – completely bizarre and surreal. But then again, you only remember your dreams if you wake up during REM sleep and ideally you DON’T wake up during REM sleep, so the fact that I remember a lot of my completely wacko dreams does indicate that I am not getting good sleep.

Even so, my sleep is muuuuuuuuuuuuuuuch better since we installed the Phillips Hue system where we can alter the colour temperature of the bulb and dim the light gradually over time. I blogged about that a while ago here. This certainly helps to make me sleepy and I fall asleep fast – within ten minutes instead of within an  hour or two!

Now I just need to find a way to STAY asleep! Not waking up in pain would be a good start. Answers on a post-card please …

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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!

Which brings me on to the study: I’m about to participate as a volunteer in a ‘sleep and RA’ study, which should be interesting. I had my initial recruitment chat with a very nice sounding researcher yesterday, and the whole thing starts on Monday. Unfortunately it’s using the same app that ‘Cloudy with a Chance of Pain’ used – the Umotif app, which didn’t work awfully well and had dreadful first-line support. Apparently it’s improved … we shall see! Anyway, I’m looking forward to taking part, although I wish that, like the Cloudy study, you had access to more of your own data, because I know that sleep for me is a bit of a disaster area!

For the study I have to wear a Fitbit-type device for ’24 hours’ for 30 days –  I forgot to ask about what to do in the bath/shower – presumably she doesn’t meant quite THAT 24-hours! I also have to fill in the Umotif app to say how i’m feeling each morning and evening, and then the researchers look at the links between RA levels and sleep problems. I can’t wait to see the results of the study, but for my own personal data I only get to see a week’s worth of sleep data, which is a bit of a shame. I’d love to see a month’s worth. Still, happy to partake in any studies that provide research into RA and don’t drastically disrupt my life!

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!

So I went in and found the previous registrar has now moved on to bigger and better things and a charming young lady doctor was there instead. I told Dr Delightful that I’d had a flare the previous week but now things were much better, and that surprisingly my bloods had actually been slightly up, which never happened!

‘Oh no,’ said Dr. D, ‘that’s not right.’

‘Huh,’ i said intelligently, ‘well that’s what the GP told me.’

‘Oh no,’ she said, ‘they have been up since last May.’

‘WHAAAAAAAAAAAAAAT?!’

‘Yes indeed, in fact in August the ESR (normal range up to 12) hit 35, which is pretty high.’

Oh look, August, what a coincidence – July was the previous time I had a flare and the GP decided in his infinite wisdom not to issue steroids, but just to give me opioid  painkillers (which were useless.) So then the bloods are way up in August and what does the GP do about it? Makes a note on my records that says ‘abnormal but expected’ and leaves it.

(I didn’t find that out until today when I went online to check up n my notes and see what all these results had been.)

I think what happens is that the GP sees the other tests are normal and goes, ‘Oh, it’s only ESR …’ <Sigh>

Anyway, Dr Delightful decided this really wasn’t on and ‘under control’ does not mean having two significant flares per year, so she has increased the dose of methotrexate to 20 mg instead of the previous 17.5 mg.

Here’s the thing though – I’ve had two flares a year for ever – including the last two or three years when I’ve been at 17.5 mg methotrexate but the bloods were OK . The previous registrar was never interested in putting up the MTX … was it because the bloods were OK and I wasn’t flaring when I went to the hospital, or is it just a difference in attitude between the two doctors? I guess the only way to find out is to wait and see … IF I start taking the increased MTX and my blood results go back to normal but I’m still having significant flares, will Dr Delightful say, ‘Oh, no, you’re fine, stick at this dose’ or will she say, ‘Well if you’re still flaring, we’d better put it up or try something else?’ I’d like to think the latter but I have my doubts.

It seems to me there is far too much reliance on blood results and not enough on patient experience, but what can you 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.

That week I had an email from my friend Carla emailed me to point out that my blog was woefully out of date (and other stuff, but that was definitely a significant part of the email!) Stupidly I said, ‘Oh, that’s ’cause I’m fine! Nothing to blog about!’ I should probably have touched wood, crossed flippers and said kein aiyn hara (and anything else superstitious you can think of) but I didn’t!

Now, here’s the interesting thing. (‘Yay, finally, something interesting,’ I hear you cry.) My bloods, which are never, never, NEVER up, even when I’m having a serious flare, were somewhat up the day after the back problem started. I didn’t know this until a knee flare started the following week and I limped into the doc with my stick.

‘How are you today?’ the very pleasant, if slightly odd-looking, locum doc I’d never seen before asked cheerfully!

‘Oh, fine, on the whole,’ I replied, equally cheerfully, ‘except see the stick? Well I have rheumatoid arthritis’ (knowing the chance of his having read any notes was minimal!) ‘but I normally walk find and don’t need a stick. I’m having a bad flare in my left knee …and the right one’s not perfect either.’

‘Hmmm, let’s have a look. Ah, did you know your bloods were up this month?’

‘No! That’s intriguing, they’re never up!’ And I explained that even when I flare horribly there’s normally nothing to show in the bloods, so even a slight raise, as this was, was interesting. But I didn’t connect it with the back problem, or the fact that they were up a week before the knee flare … brain not fully functioning due to a couple of poor nights’ sleep thanks to knee pain!

‘Hmm, what do you usually do when this happens?’

‘Steroids – prednisilone’.

‘Hmm,’ (his favourite word I think), ‘Well that’s not ideal!’

So I looked him straight in the eye, which was kinda hard ’cause he was an odd-looking chap, but that’s neither here nor there, and said, ‘Oh … so what is ideal then?’

Didn’t even get a hmm that time, more of an ‘Uh … uh … uh … erm…’ followed by, ‘are you on any regular medication for it?’ See, told you he wouldn’t have looked at the notes! So I explained about methotrexate and hydroxychlorquine and he said, ‘Has anyone talked to you about tweaking your methotrexate dose?’

‘Yes of course, in the 11 years I’ve had this it’s been altered many times but that doesn’t really help with a short-term flare that needs to be cleared up so that I can carry on living/working,’ or words to that effect.

‘Hmmmmm … let’s see … when did you last have steroids?’

‘Ages ago?’

‘Oh heavens yes, two-and-a-half years ago!’

‘Really, surely not that long!’

‘Hmmm… oh my mistake, one-and-a-half years ago. Oh well, in that case we can hardly say you’re overusing them. Shall we go for it then?’

‘I think we should!’ Metaphorically wiping my forehead in relief to have come to sensible conclusion.

So we went for it. But of course in my anxiety to get something proper sorted out for the knee I completely forgot about the back (or hips for that matter) again.

Six-and-a-half HOURS later I was able to pick up the steroids from the chemist and finally get some proper treatment for the knee. (Once upon a time your doc would print out the scrip, sign it and give it to you. This must have added all of 30 seconds to the consultation time. Now, presumably to ‘save time’ the prescriptions have to go to a central place, get printed, are signed by some other doc when he has the time, and then go over to the chemist. The other doctor doesn’t have time until the end of the day so you wait all day for something that needs treatment as early as possible. MADNESS!)

Anyhooo … I’m now left with a lot of questions and no one to answer them. I really, really hope I will never have back pain like that again and I just pulled a muscle and perhaps that caused an inflammatory response that got into the bloods and raised my ESR.  OR perhaps the back pain was actually referred knee pain, which can happen in that part of the back apparently. Or, perhaps, worst case, that was arthritis in the back and I’ll have another bout some time. Flippers crossed, toca medera (my Spanish teacher’s favourite phrase after madre mia!), kein aiyn hara that that won’t be the case!

And the final bit of good news? Well, the knee is responding extremely well to the steroids! So are the hips, which is a bit concerning … if they get back again I probably need to drag myself down to the doc again, but I think you can see from this post why i try not to do that too often!

Great Blogs I have Read this Week

September 29, 2017 at 12:51 pm | Posted in rheumatoid arthritis (RA) | 6 Comments

It’s the final day of the 3rd Annual RA Blog Week – thank you Rick for getting me posting again – I wish you had time to do this monthly throughout the year so that I’d get blogging more! Today the prompt is to discuss great blogs I’ve read this week.

I have read a LOT of great blogs this week, some from old friends like Cathy and Rick, some from people I hadn’t come across before and some from new bloggers. Way, waaaay too many to mention but here are a few that stood out for me.

On mental health day, Cathy posted a lovely, thought provoking and positive blog. It was also great to read Steph’s blog from The Young Face of Arthritis – especially ‘Don’t. So true. (What am I on about? Go read it!) Some people are going through hell at the moment and still have found the strength to comment on mental health. The one that stood out here for me is from Unexpected Advocate – the says ‘Answers? Hell no!’ But then she gives a pretty good answer at the end I reckon: “I only have one life to live. I will not miss it because I am bitter or angry.” Go girl!

Then we had tips and tricks – I’m sure there are loads and loads of fine ones out there, but I haven’t had time to read them all yet, except for Leigh’s. Unlike any of my posts ever, this is short, sharp and to the point – taking in the big picture very nicely.

Then we had Partners. Many, many of us are so darned lucky with our partners, most certainly including me! Leigh, aka Phat50Chick, is one of those, and Cathy and Rick again, and also Lori, the Chicken Whisperer! And then, something completely different! Lene’s best friend is … her body! A fascinating, super-positive read!

And finally … hobbies. It’s sad to hear how many people find their hobbies harder, such as Leigh, who’s had a really rough time of it this year. But she’ll persevere, I’m sure, as have PsA Mermaid with her beading, and Aimee over on Capture, Craft, Cook, who sounds a bit like me (a little over-hobbied but loving it).  I also enjoyed Rick’s very entertaining post on inheriting his father’s collecting bug!

I’ve read so many along the way but failed to make notes or be in any way organised, so those who I haven’t mentioned – you still wrote great blogs!! Thanks to everyone who participated in RA blog week and special thanks to Rick for organising it. I’ve had a blast and hope you’ve all enjoyed it as much as I have.

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.

 

A panegyric to my partner

September 27, 2017 at 9:05 am | Posted in rheumatoid arthritis (RA) | 10 Comments

Today’s annual blog week prompt is partners – where would we be without them?

I am incredibly lucky in having my hubby to support me, which he does in a million different ways, from doing the vast majority of the housework all of the time, to fetching and carrying when I’m having a flare, to just being cool about it when all I want to do is flop about like a damp squid and maybe read a book. He’s also handy in the kitchen and although I usually cook (if you can grace it with the name cooking!), if I’m not well he’s perfectly capable of diving in there and rustling something up for both of us, which is something he often does at the weekend anyway. He’s also happy for me to go bombing off doing my own thing – for instance in the last month or so I’ve been away for a painting weekend, a felting weekend and to visit a friend in Wales, leaving him at home to mind the cat!

Things aren’t always perfect – once in a blue moon we bicker or he makes some little comment that I, in a state of fatigue and flare, take the wrong way and have a good sulk about, but the important thing is that if something like that does happen we can always talk through it – maybe not right then but certainly within a day or two. There was once a comment, right in the middle of a flare, on the lines of he was sick of hearing about how I wasn’t feeling good – just once mind, in over ten years of marriage – and yes, I found that hurtful, but then I took a good look at myself and thought, ‘By heck – I have been whinging a lot lately, and it’s not like he doesn’t know how I’m feeling, and he’s exhausted himself over the last few days running around looking after me… which is why he’s being a miserable git!’ Now, I’m not saying that stopped me sulking or feeling miffed … but at least I was able to see it from his point of view too.

Of course it’s hard having a chronic disease but it’s also hard being the partner of someone with a chronic disease – it’s not what either of us expected when we first got together, but like everything else in life, you’ve just got deal with the lemons life throws at you and try to make lemonade. (By the way, life, if you fancy a change, throw me some elder flowers instead; I quite fancy trying to make elder flower cordial!)

I’m not a terrible wife  – I do do ‘stuff’ around the house and support hubby in his hubby hobbies (such as learning calculus, strangely enough), although it might not sound like it from the above, and I do work longer hours, but he does more ‘stuff’ for sure! There’s no doubt about it, I’m incredibly lucky in my helpful, laid back, thoughtful, supportive and, importantly, cuddly hubby!

 

Tips and Tricks for managing RA

September 26, 2017 at 11:59 am | Posted in rheumatoid arthritis (RA) | 2 Comments

Today is Day 2 of RA Blog week – all about tips and tricks for managing the physical difficulties of RA. I’m going to refer back to a previous post for this one because a) everything in there is still relevant to me now and b) I’m a tad short of time after an exhausting day yesterday failing to obey rule two of my tips! Here is the link to my previous post about tips and tricks for coping with RA.  It actually covers a bit of how to cope mentally as well, but as I said in yesterday’s post, the two are inextricably linked for me! I look forward to reading everyone else’s tips and tricks and seeing what I can pick up from the wonderful RA blogging community!

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.

Knee’s better!

August 3, 2017 at 8:42 am | Posted in rheumatoid arthritis (RA) | 4 Comments

Hurrah! I have to say though, I was deeply unimpressed with the opioids! The knee flare got better of its own accord, so yay that it didn’t need steroids, but boo that I probably had two more days of pain than I would have done if I’d been given a pred taper! The opiods were to be taken three times in 24 hours – fat lot of use that is if you wake up in pain in the night, which I ALWAYS do if I’m having a flare. I had to save one dose to be taken at bedtime and then couldn’t take the next one till morning. As they tended to provide good pain relief for about three hours, this was … less than perfect!!

As to receptionists triaging, I suppose I’ve been lucky that it’s taken this long to reach our surgery. This is an article about it from 2013 saying 1 in 8 practices were doing this very thing.

I’m on the phone now waiting to see if I can get through the triage system for something non-RA-related and minor. In spite of being both those things, it might require antibiotics … but I bet I can only see a nurse who can’t prescribe … and that’s if I’m lucky. We’ll see … I am number eight in the call queue.

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