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
Tags: , , , , , , , ,

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!

Advertisements

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
Tags: , , , , , , , , , , , , ,

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
Tags: , , , , , , , , , , , , , , , ,

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!

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
Tags: , , , , , , ,

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
Tags: , , , , , , , , , , , , , , , ,

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.

On the Third Day Before Christmas…

December 23, 2016 at 5:16 pm | Posted in Me, rheumatoid arthritis, rheumatoid arthritis (RA) | 10 Comments
Tags: , , , , , , , , , , ,

On the third day ‘fore Christmas my Arthur gave to me, a bad pain in my left knee.

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

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

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

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

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

Happy Holidays everybody!

A cracking anniversary weekend

October 20, 2016 at 1:27 pm | Posted in Me, rheumatoid arthritis (RA) | 2 Comments
Tags: , , , , ,

Well, on a discussion on Carla’s blog, Irma said ‘Wouldn’t describing a normal life, despite RA, be far more conducive toward offering hope to others newly diagnosed?’ and I thought heck, yes … at least up to a point, and didn’t I used to do that more, and not just moan about a) pain b) the **** GP surgery c) the b**** hospital d) the **** NHS? Yes, I did! Perhaps I should do that again!

So here goes-  I’m not going to mention the pretty miserable last couple of weeks where I’ve been suffering quite a bit of pain and fatigue, and I’m not going to mention that the GP lost my prescription AGAIN and I had to push to get a sharps bin in time to actually put my methotrexate injector into it  … (although perhaps I’ll post about those later!) Here I’m going to tell you about our fabulous 10th anniversary weekend instead.

Hubby and I had a weekend away in Ely, not too far from home. I had the Friday off and we drove down late morning, very leisurely and had a really lovely drive – we were lucky with the weather and the we took the back roads so no traffic issues apart from the odd tractor. We reached the really lovely Poet’s House Hotel (which I posted about when we stayed there last year too) rather early for check-in, but luckily the room was ready anyway, and what a lovely room it was. Alas, no photos, but the rooms are beautifully decorated, spacious an comfortable … really comfortable. I slept like a log when I was there! We had mostly good weather and Ely is a beautiful city. ‘City’ makes it sound big, but it’s absolutely tiny. It’s a cathedral city, not an economic/size-related city. We had a delicious and beautifully served anniversary celebration meal on the Friday night – with none of the Fawlty Towers elements that plagued our Sussex stay recently! We shared a bottle of wine – which may have something to do with the sound sleep that night!

We visited Cambridge on the Saturday and the walk down to the station was through the cathedral grounds two lovely parks – about twenty minutes walk, but very pleasant indeed – and my RA wasn’t bothering me much at all so the walk was a pleasure.

In Cambridge, apart from a general potter about, we went to a really superb exhibition at the Fitzwilliam museum, called Colour: The Art and Science of Illuminated Manuscripts. It really was a cracker of an exhibition – unlike most museum exhibitions in my experience, it told me pretty much everything i wanted to know and much, much more! It was easy to pick out the info I wanted (mostly about science and technique) and ignore the bits I was less interested in (mostly the details of which biblical tale was being illustrated etc.) and the way it was organised meant that even though it was quite busy, everyone could easily get to see everything. As the icing on the cake, we went to a fascinating talk by Patricia Lovett, who is not only an expert on calligraphy and the creation of such manuscripts but also a tremendously witty and personable woman who kept us all entertained for over 1.5 hours. She must have been tired after it but it didn’t show! I was flagging slightly by then, although I didn’t notice during the talk, because it was so good, so we went to the cafe and got a drink to perk us up, and then walked back to the station (more walking, RA still not a problem!) and then back up to the hotel (more walking, still fine!) We then headed all the way back down the hill (I forgot to mention Ely is on a hill) to get fish and chips, in memory of what we actually did on our wedding night ten years ago! We ate them in one of the parks and then headed back to the hotel, back up the HILL. Yes, I was tired and achy by this time, but that was OK because we were done for the day!

The following day we thought we’d go for a walk as I was quite stiff and wanted a chance to loosen up before going home … but we didn’t get very far. Just down the road we found a book shop which, to our surprise, was actually open. (This was Sunday morning.) It was a new bookshop, not second hand – you don’t see many of those about anymore! The staff were very cheerful and chatty and offered us ‘anniversary coffee’ when they found out why we were there – and lovely coffee it was too. That was the only disappointment in Poet’s House – great food, not so great coffee! Of course that meant we spent all our time there, not walking – but that was fine. I came away with two books I bought myself and one hubby bought me as an anniversary present.

Couldn’t have gone better really – apart from a bit of a breakfast hiccup where Fawlty Towers caught up with us again… but I won’t go into that! It was a gem of a short break and lots memories I’ll treasure. In fact, to help us remember to treasure the memories, hubby’s anniversary present from me will the picture that was hanging on the wall in our bedroom at the hotel. It’s the Bookworm by Carl Spitzweg. It’s a satirical picture poking fun at the poor bookworm, but in spite of that hubby and I both would actually quite like to BE the bookworm, so we’re happy to have it in our living room cum library!

RA Blog Week: Day 5 – Great blogs I’ve read this week

September 30, 2016 at 5:39 pm | Posted in arthrits, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 1 Comment
Tags: , , , , , ,

My picks are top heavy towards the top of the list of contributors, not because they’re (as far as I know) any better than the bottom of the list or the middle, but because I started being methodical and going to each blog in turn, and then I got short of time and had to skip to a few others at random – so if I’ve missed you out it’s nothing personal!

I seem to have found the biologics posts especially interesting and inspiring, maybe because it’s something I know so little about. I really enjoyed the wide variety of takes on this fascinating topic.

Starting stories: A depressingly typical but nicely written starting story can be found at Jax.

Biologics: A great, and well balanced, tale of biologics from someone who has had a LOT of experience at As My Joints Turn. And a less positive one, sadly, so far, for Trish. But to balance that, Brenda has had a great experience. And a wonderful post in defence of biologics from Lene at the Seated View, and a fascinating alternative take (as always) from Cateepoo. 

Wildcards: There’s a terrific post about RA and depression over at Single Rheum including some great advice.

Active versus passive patient: A nice take on this from J G Chayko and the old lady in her bones. 

The pain of pain meds: Arthriticchick says it all and Deserae’s is actually painful to read  … but I think you should! I really empathized with this one.

It’s been a fascinating week and I’ve come across a whole heap of blogs I didn’t know were out there.

Thanks to Rick Philips of RADiabetes for setting it all up and introducing me to them, and for some great posts of his own. I wish I had had time to participate more fully and post and read more but it’s been one of those weeks! Maybe next year …

RA Blog Week Day 3: Advice

September 28, 2016 at 2:25 pm | Posted in rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 8 Comments
Tags: , , , , , , , , , , , ,

I’m taking a ‘wildcard’ option today. The topic is ‘Biologics’ but I’m still on good old methotrexate and likely to remain so unless things get much, much worse, because biologics aren’t an option for mild RA in the UK. So there are two wildcard options – depression and advice. I don’t suffer from depression although a flare certainly makes me low and grumpy, so I’m going for advice.

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

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

RA Blog Week Day 2: Active or Reactive Patient?

September 27, 2016 at 10:20 am | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 1 Comment
Tags: , , , , , , , , , , , , , , , , , ,

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

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

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

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

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

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

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

 

Next Page »

Create a free website or blog at WordPress.com.
Entries and comments feeds.