Monthly Archives: February 2012

Expert patient programme roundup

It was the last session of the Expert Patient programme this week and, I have to say, I’m somewhat relieved. I’d tried not to have any expectations of the course, but even so, I did think it would be more useful than it turned out to be. Although I do have a lot of coping tools and techniques in my ‘toolkit’, I think I thought that discussions and group exercises would be interesting and stimulating, and that having some peer support from others in similar situations would be beneficial. Sadly, the course really was so rigid that discussions were cut short and small group and pair exercises were few and far between. Apart from action planning and a couple of visualisations, most of the tools and techniques were presented as theory and we did not get to experience much of them which, even if they were not new to me, would have been interesting and useful.

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A doozy of a flare-up

So, it seems that I spoke too soon last week, as pretty much, the afternoon after writing that blog, a nice old flare up started to creep up on me. It wasn’t too bad at that point – creeping into my hands for most of the weekend, making them stiff and sore. However, on Sunday my knee got pretty bad. I wondered if I’d done something during a home pilates workout the day before – perhaps I’d pulled something when I was doing a stretch? By Sunday night, going up and down stairs was getting too difficult  and so once I’d gone up to bed early evening, I stayed there.

By Monday morning the knee pain was all gone. So not an injury then but part of the flare up. No pain for the rest of that day until…. until I got home late that night. I’d gone over to Leeds to see one of my favourite bands of the moment with a few friends. We’d got back into Manchester at 11.30 and by 12, I was already in bed, having shelled out for a taxi home from the station. The knee pain was creeping back on, but I stupidly thought that it would be fine as I’d sleep it off as I had done on Sunday.

It was not to be. The pain creeped up and up on me in the knee, my hip and in my hands and fingers until it was louder than my urge to sleep. I lay in bed, dozing off and on and listening to my audio book of the moment (Bill Bryson’s Notes from a Small Island) and praying for sleep. By 5am, I realised that I was no longer half awake but properly awake and I made myself hobble out of bed and get a heat patch to put onto my pyjama bottoms to try and bring some relief to the poor knee. By the morning, the pain was still pretty severe. Walking was pretty difficult and some of my fingers were swollen too. There was no way I was going to get downstairs, so I was particularly thankful that my partner (recovering from a heavy cold) was well enough to bring my breakfast up for me.

I was supposed to go back to my expert patient programme but there was no way I was physically or emotionally up to it. I’m always a little emotionally fragile during a bad attack, even more so when I’m also hormonal AND haven’t slept. So when I realised that I was not mobile enough to go to zumba, I just burst into tears!

I spent the morning in bed, feeling a little sorry for myself, but mainly being pissed off at missing my dose of happy through Zumba. The attack started to ease off at around lunchtime and by the afternoon I was able to cycle (it was easier on my knees than walking) and visit a friend, bringing along copious amounts of cake with me. By the evening, the pain was all gone, and all I was left with was exhaustion from not having slept the night before.

As I write, it’s now Thursday and I’m pain free again. Seven years into this condition and I still get surprised at how rapidly a flare can come on, and how rapidly (relatively) it can completely disappear again. The other thing this flare highlighted is how useless most of the painkillers are. I have been prescribed Naproxen, but you’re supposed to take it with food. Pretty useless if an attack starts in the middle of the night. Mind you, when I have tried taking them with food, they didn’t do much anyway.

I’m not too disheartened by this week’s flare. It only really left me incapacitated for one day, which on the scale of things isn’t too bad. I just wish it hadn’t been my zumba day! Next time it strikes, I hope that its timing will be better!

Stabilising?

I can’t believe it’s been two weeks since I last wrote my blog. The time has zipped by. Happily, I’ve not written because I’ve been really busy with work, rather than because I’ve been in too much pain or too tired to. In fact, I’ve had another relatively calm and stable two weeks, with good energy and only mild pain on a few days. Could it be that the antibiotic medication is finally working? I guess if I don’t have any major flare ups for a few more weeks, we could maybe conclude that. Though you never really know for sure.

Expert patient programme
I didn’t make it to the Expert Patient programme this week as I was down in London for work, but I did make it last week. Unfortunately again, I didn’t find it all that useful. This is partly because I have been living with my PR for so long that I already am quite an ‘expert patient’; I am already doing most of the things they suggest. It’s also partly because I don’t really like the way that the course is being delivered. Being a professional facilitator/trainer, it’s hard not to sit there and see improvements that could make it more interesting, more imaginative, more interactive and… more fun! During an exercise to talk about our negative emotions, I didn’t like that we were told WHICH emotions to talk about (rather than letting us choose for ourselves). It was also quite a negative exercise as it really brought me and the woman I was talking to down. Although there was a brainstorm (now called a freethink) on how to deal with those emotions, we didn’t actually practice anything and I was left having remembered lots of negative feelings (which I wasn’t feeling before we started to talk about it!) without actually being given the space to do something about it there and then.

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