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.

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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) | 8 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.

Blinking knee again!

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

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

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

‘Oh, you want pain relief then?’

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

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

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

‘Oh … OK then …’

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

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

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

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

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

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

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

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

‘More than my RA’ – a UK body-image intervention study looking for participants

May 5, 2017 at 1:04 pm | Posted in rheumatoid arthritis (RA) | 1 Comment

Interestingly, just after my good friend Carla’s post about a written intervention study, I saw an invitation to a different written intervention study on Facebook. The details (not on Facebook) can be found here. It sounds like a rather gentler version than the ‘write about trauma’ study that ‘Galloping Grandma’ posted about that is reposted in Carla’s blog  … or at least I hope it is, because I’ve signed up!

This one is about improving your own body image and it’s open to any women over 18 with RA who are based in the UK. It’s some short written exercises (anonymous so that the researchers don’t know who’s written what) and some questionnaires so not a great deal of time required. The exercises are designed to help improve your body image apparently … I try not to think about my body image, which is probably an indication that it needs improving!

Obviously I won’t be posting my thoughts about it … at least until after it’s completely over, for fear of biasing someone else, but I really hope there’s someone out there who’s eligible and will take part – anything aiming to help people with RA I’m happy to have a go … well, OK, not anything … no custard pies in the face, no running marathons … but a few minutes out of a few days … yeah, I’m happy to give it a try!

If you are interested, or have any questions, please contact us Jessica.Alleva@uwe.ac.uk.

Woohoo for Pilates… and other news!

April 22, 2017 at 5:39 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, fibromyalgia, joint pai, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 8 Comments
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I have just realised I haven’t posted on this blog THIS YEAR! Shocking neglect! Part of the reason is that I haven’t been having much in the way of RA problems – things haven’t been perfect but I’ve felt generally much better since Christmas than I have for quite a while … until a couple of weeks ago, when I started to get morning stiffness (I’ve had NONE most of the year) and some pain.

Now various things could have been the (or part of the) root cause of this. We were on holiday three weeks ago (lovely time!) and that meant I had much more caffeine and much more gluten than I normally would – but I’ve been relatively good since I got back and it was only a week away. Then holiday also upset the routine and therefore the sleep, and sleeping badly always adds to the aches and pains.

However, one big thing is that I have been having weekly Pilates sessions since November (I think, maybe October, maybe early December!) and felt a lot better after the first few of those … and due to my holiday and then Easter I’ve had three weeks without a Pilates session. I suspect this has FAR more to do with the increase in pain than anything else, although of course I can’t prove it.

Anyway, I had my first session for three weeks yesterday and felt MUCH better after it … although I still had a lot of morning stiffness and pain today. Hopefully after another session or two I’ll be back on track.

In the meantime, a really excellent new NRAS magazine arrived last week – one of the many interesting articles hinted at a link between fibromyalgia and sleep (although that wasn’t what the article was actually about), and that is something I’ve been thinking for quite a while so it’s interesting to see the medics sniffing round the same idea.

Another interesting article discusses (briefly) a study carried out in San Francisco on why some people don’t respond well to anti-TNFs. Patients who have a higher proportion of an inflammatory protein called type 1 interferon beta, compared to type one interferon alpha, respond less well. Also monocytes (a type of white blood cell) behaved differently in different people. This could lead further down the interesting path of being able to personalise treatment more by understanding a patient’s personal biology, but also perhaps (my suggestion not the article’s) indicates another thing that’s been being suggested for a long time by a lot of people … that RA is not just one disease but many lumped together under the same label.

There are also various grim reminders that being overweight can cause further problems for people with RA so I need to get back on track with the diet, which has gone to pot a bit since the holiday! I did manage to mostly avoid chocolate at Easter … but then went and entered a raffle on Easter Monday with a table full of all sorts of prizes and got a call the other day to say I’d won … a chocolate bunny! Oops. Oh well, I thought, perhaps it’ll just be a little one. I picked it up today. It is labelled ‘Giant Chocolate Bunny’.  Perhaps I’ll do the sensible thing and give it away …  🙂

On the Third Day Before Christmas…

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

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

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

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

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

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

Happy Holidays everybody!

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