Research – RD Blog Week Day 4

September 27, 2018 at 4:24 pm | Posted in rheumatoid arthritis (RA) | 1 Comment

This is today’s RD Blog Week topic:

Research – Do you incorporate research into your disease management? If you do explain how and what difference it has made. If not discuss why not. Help us understand any barriers you have experienced in using research about Rheumatic Disease.

Nope, can’t say I do. When I was first diagnosed I researched everything I could get my hands on about RA, I had books, I read stuff online, I joined societies relating to RA, and what did I discover? Basically that if there is such a thing as a typical RA/RD patient … I’m not it!

I think if something changed in the way my disease affected me I would be researching frantically again trying to discover what was going on and why, but because I’m ‘lucky’ in that my RA is so mild, I work full time and have half a tonne of hobbies, of which RA is definitely not one, that I don’t have a lot of time to research something that isn’t really affecting me.

Last time I did any research was to prove a fully fledged practicing GP wrong when she told me that methotrexate was a steroid (it’s not), an anti-inflammatory (it’s not) and that the way it works in RA is completely understood (it’s not!) Fortunately she was not my GP – just someone I met socially!

What I do do, however, is participate in as much research as I can. I’m a member of all sorts of societies pertaining to pain, arthritis etc. and they periodically throw up research projects that are taking place, and whenever I’m eligible, I participate, and generally blog about it too, such as this one about a recent sleep study or this one about body image where i couldn’t post any results because the technology failed us and I never completed it! I’ve taken part in three or four studies in the last year or so, on top of the long-term ongoing epidemiology NOAR study that I’m part off, which I just had my ten-year anniversary visit with! I’m keen to participate in the hopes that the research will do some good somewhere along the line and help others, and also because knowing I’m not ‘typical’, I want that atypical type of disease presentation also represented in research so that people coming along and looking for things in future might find more that relates to them than I did, when doing their own research.

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Keeping fit with RA

September 26, 2018 at 6:16 pm | Posted in rheumatoid arthritis (RA) | 5 Comments

So Tuesday’s prompt for RA Blog Week 2018 was about how we stay fit with RA. Ha! I’ve never been fit in my life – however, I am, I believe, getting fitTER. The main RA-related thing I’ve been doing is one-to-one Pilates classes with a lady who specialises in helping patients with various joint problems back to fitness. I must have been doing that for a couple of years now and she’s marvelous! Her main tenets are if it hurts, DON’T DO IT, and while things aren’t hurting, build up the muscles around the joints so that when the next flair happens the muscles in the rest of the body can cope better with, for example, lugging my big bod around when the knee’s bad. I go once a week (approximately, if I’m not on holiday, she’s not on holiday etc.) to a fully equipped Pilates studio in Norwich and get myself hooked up to all sorts of weird and wonderful springs and rods and things, and strengthen away for an hour – and have FUN. We’re both gigglers and sometimes the other teachers/students must wonder what on earth is going on!

The other thing I’m doing is losing weight – not by any miracle drug or miracle regime. Simply by eating less and moving more. It seems to be working for me – SLOOOOOOOOOWLY but it’s working. I’ve lost 19lb since March in a fairly steady decline, although it has slowed after the first 5 or 6 lb just fell straight off!

Obviously the less extraneous weight you have pushing down on a flaring joint, the better you’re going to feel, so I’m slooooooooooooowly getting read of that extraneous weight. Sadly I have a long way to go – but happily it’s working.

Eating less involves not eating the things that I’m tempted by, such as chocolate, cakes, anything sweet, in the week, and limiting it to one or two at weekends. Of course I’d lose weight faster for a bit if  I cut all that bad and lovely stuff out completely … but then I’d just fall of the wagon big-time and put it all back on again. I’m seeing this 5 days of sensible eating and 2 days of SLIGHTLY less sensible eating as more of a lifestyle change than a diet, and therefore something I can and will keep up.

Moving more involves really trying to get out for a little walk first thing in the morning before work and another one at lunchtime. My RA is VERY mild and well controlled but I’m still not really in a position where I can more ‘serious’ exercise and you couldn’t get me into a gym for a million pounds! I really don’t know how that’s going to go once winter kicks in. It’s hard enough to do the first thing in the morning one now, with bright sunshine and 9 degree temperatures. What about when it rains and it’s minus 5? I don’t know! Also, as from October, I shall be working from home rather than from an office a couple of miles down the road, so will I be able to push myself out of my cozy house for a ‘nice’ walk in the snow and ice? I doubt it. I’m thinking exercise vids may be the way to go for at least some of the winter!

So wish me luck for the next few months and then hopefully I can get back to really regular walks in the spring!

So, RA Blog Week has rolled around again!

September 26, 2018 at 5:41 pm | Posted in rheumatoid arthritis (RA) | 2 Comments

I seem to remember saying last year that I really must post more OUTSIDE things like RA Blog Week. I didn’t do very well! So thank goodness for things like this with daily prompts to suggest things to blog about. For Monday (oops, I forgot, I was just back off holiday, it was ‘the medicine’ – how are you treated by doctors and other healthcare professionals? Well, where do I start? By linking back to a whole host of blogs I’ve done about this I reckon.

So, you may have noticed if you’re a frequent reader, that I tend not to be a big fan of doctors and nurses, although I’ve had some good experiences. Here was one that wasn’t so good from quite some time ago. But then again, I have had some really positive experiences. One of the big issues though is, at both GP and consultant level, in the NHS you’re very lucky to ever see the same doctor twice, so I also posted about the frustrations of not having a relationship with your doctor. And then there are those times when you meet a doctor who hasn’t got a clue about RA and think of all the things you SHOULD have said to them … an hour after you leave.

So to bring us up to date, nothing much seems to be changing on the doctor and nurse front. At the moment I’m waiting for a chance to get a blood test re my methotrexate – it’s now two weeks overdue but as they have staff shortages you have to turn up at about 8:20 and wait an hour or so, if you’re even lucky enough to be near enough the front of the queue to get one that day.

That’s my current frustration. On the bright side, we’ve just had a fabulous holiday in Oxford, which I really must post about … but probably won’t! 🙂 I will say though, we walked LOADS and I felt so good for it! I’m trying to keep that up on my return but work is getting in the way.

When Polly met Carla (the sequel)

August 13, 2018 at 12:23 pm | Posted in rheumatoid arthritis (RA) | 5 Comments

So, what was that rare treat you had Polly Penguin, I hear you all crying? Well, no, I don’t actually because the title kind of gives it away … YES! For the second time ever, two years after the original When Polly Met Carla, Carla and I managed to meet up, during a brief drop in to the UK for Carla and Hubby. I’m very flattered that they arrived in Heathrow one day and then had six hours of train rides the next day to come and see me! It was so good to meet up with Carla (and hubby) again and catch up on all the news … and luckily the pub/bar/restaurant we’d picked had sticky toffee pudding to die for. (Carla would have been very disappointed if that hadn’t been the case … apparently you don’t get right over in the US! <grin>)

Among other things I got to here more about all these great patient advocacy meet-ups you guys have over there  … and that brings me to a BIG THANK YOU, to Carla for organising it, Wren for the amazing drawing (as ever) and all you folk that kindly signed it at one of the meetings and sent lovely messages! What is it? I (once again don’t really) hear you cry. It’s this fantastic Wren original card:

Wren Carla Card

inside card

Isn’t that great? Wren said she started the card when it was raining buckets on this side of the pond and she thought she’d provide some inner sunshine with a nice summery, flowery picture – but when it arrived we were in full heatwave mode. Still, a nice, summery card was entirely appropriate for a heatwave and definitely is doing its inner-sunshine providing job now, when it’s been raining consistently for a couple of days!

So thank you again all who signed it, thank you so much Wren for the lovely card and Carla for organising it and of course hand-delivering it! 🙂

Maybe one day I’ll get to meet some more of you in person – that would be great!

Phew, what a scorcher!

August 3, 2018 at 8:40 am | Posted in rheumatoid arthritis (RA) | 4 Comments

We’re having a bit of a heatwave here in the UK, and indeed across Europe. It’s getting very unpleasant indeed in parts of Europe, as in life threateningly bad, but here it’s really quite pleasant most of the time. If the heat stays dry I can cope with it, although there have been some mornings where it’s just two darned hot to go for a walk, which isn’t so good.

Now this might just be coincidence because having taken part in a six-month study about pain and weather where my results were totally inconclusive I appreciate it’s easy to see patterns where they don’t exist, but … during the first part of the heatwave before we had a massive and rather delightful storm on Friday night, my RA … wasn’t. I was pretty much symptom free. I’m never too bad, I only have the mildest of mild RA, but I normally have aches and pains at various points during the day. During most of that hot and sunny period – nada! Then the storm broke and within a few hours I was back to the usual aches and pains. We had a few days of clouds and rain, which was lovely after all that melting in the heat, but my aches and pains came back. Now we’ve had a couple more days of serious heat and … well, I’d love to say the pains have all gone again but the truth is my hands are killing me and I’m not sure how I’m going to get through the day. Glad I finish work early today to go to Pilates but may have to tell the teacher I can’t hold onto anything for very long!

So … inconclusive once again!

On the bright side, I had a real (and very rare) treat yesterday … but I’ll save that for another post. 🙂 Since the treat involved a meal out, I might have eaten something that made my RA tingle a bit … that’s the trouble with all these epidemiological studies. They look at one aspect (or a number of aspects) but can’t control for all the others. Not a criticism – just the way it is!

So, signing off now to … carry on typing! This is one of those days where my job is not the ideal one for someone with RA! Bye for now and wishing you all a pain-free day.

My personal sleep study results

July 3, 2018 at 11:25 am | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 2 Comments
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So … how long have I been saying, ‘I really must post about that sleep study I took part in?’ Well, for over a month, since I got my results back from Katie, who’s running the ‘QUASAR’ study at the Arthritis Research UK Centre for Epidemiology in Manchester. Oops – bad Penguin!

Why QUASAR? A slightly convoluted acronym for ‘Quality of Life and Sleep in Rheumatoid Arthritis’. (Also a large celestial body, characters in the Marvel comic universe and another study, in cancer – but those are not relevant here!)

I’ve talked about the study in a few places before, here,  and here  and in passing here  … the latter just proving how woefully slow I am at getting around to blogging. But now I’m finally going to talk about the initial, personal results that Katie has sent me.

First of all, here is a week’s worth of data showing correlation (or lack of it) between amount of sleep and symptoms.

Continue Reading My personal sleep study results…

Post-flare milestones!

June 15, 2018 at 10:15 am | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 6 Comments
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I’m feeling pretty pleased at the moment. I think the flare has finally, well and truly gone. I finished the steroids yesterday – or rather I should have done. Mysteriously there’s three left so I obviously took 6 or 7 on a couple of days instead of the correct 8. OOPS!

  1. Anyway, that’s number one, steroids finished!
  2. Yesterday, for the first time since the flare started about two weeks ago, I took only paracetamol (Tylenol) and no Ibruprofen. (Obviously when I say only paracetamol, I also took all my usual arthritis meds, but no extra pain killers except paracetamol.)

Continue Reading Post-flare milestones!…

Please stop stealing my blog posts

June 13, 2018 at 10:03 am | Posted in rheumatoid arthritis (RA) | 3 Comments

This is a blog about sites that steal other people’s content to earn them a profit through rather dodgy advertising – you know the sort of thing – ‘Get a million dollars of free goods on Amazon: click here’ or ‘Lose 36lb in 3 days just by clicking this link’. They feed on the gullibility of naive people, and oddly enough, that’s not what motivates me to write and not what I want my writing used for, thank you very much. It’s not that I think many people are actually reading my content on these sites but that’s not the point!

One such example appears to be Health and Fitness Recipes .com* – I’m not writing it out as a proper web address because the last thing I want is a link to the site! However, I’m publishing these here to see if they automatically scrape this one too. Then if anyone reads it there they will know what’s going on!

I’m not sure what triggers the site to be scraped – perhaps some keywords like medical, doctor, health, fitness, RA, rheumatoid arthritis, surgery, GP … who knows. There’s a tasty little smorgasbord of keywords for you though, if you want to steal this one, guys.  Continue Reading Please stop stealing my blog posts…

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…

‘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!’…

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