Quick update

June 12, 2018 at 12:26 pm | Posted in rheumatoid arthritis (RA) | 6 Comments

On the bright, Pollyanna side, I managed to have an enjoyable, if sedentary, weekend! I did pretty much nothing but rest – rest and read books, rest on a chaise longue in the sunshine, rest and chat to my mum, rest and watch telly, rest and do some drawing and painting, rest and do some embroidery … SLEEEEEEEEEEP! Hubby was marvelous and did … well, everything else really!! And yes, my knee is very much better! The steroids (and rest) definitely helped.

Continue Reading Quick update…

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‘That went better than I expected!’

June 8, 2018 at 2:13 pm | Posted in rheumatoid arthritis (RA) | 6 Comments

The above is one of hubby’s favourite phrases, and one of the first things that alerted me to the fact that he’s not a natural optimist, but today I found myself saying the same thing.

I realised this morning that there was no putting it off – I’ve been flaring for the last three or four days and I had to see the GP. If you read this blog much you’ll know how much fun that can be and why I was putting it off! After a few days of resting as much as possible, alternating painkillers, putting on compresses, rubbing in gel, bathing and, ultimately, realising I’d been overdosing slightly on the ibruprofen by mistake, the time had come!

Continue Reading ‘That went better than I expected!’…

Thank you Healthline!

June 5, 2018 at 12:07 pm | Posted in rheumatoid arthritis (RA) | 7 Comments

I’m chuffed to bits to once again have been listed as one of Healthline’s RA blogs of the year, even though as ever I haven’t posted very much. I’m actually having another knee flare today (with various other painful bits but that’s the worst bit as usual) so it’s nice to have something to celebrate a little bit too! Continue Reading Thank you Healthline!…

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. Continue Reading Sleep and sleep study update…

Another flare and another study

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

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

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

Do as I say, not as I do!

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

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

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

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

Good news and bad news … and good news …

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

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

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!

 

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