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.


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.

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