A good week

Following last week’s emotionally difficult week, this week has been remarkably stable and even. Amazingly, I’ve had no pain at all for almost five days now, and relatively good energy levels. I’ve not even had to take any time off ‘sick’ from my work, which is the first time that’s happened for a long while. Usually, I have at least half a day or a day in bed due to fatigue or pain each week. My last flare up was at the weekend, and although it cut short an evening out, it wasn’t too debilitating for long.

It’s tempting, when things are going well, to look for reasons why. Just as it’s tempting, when things are going badly, to look for a reason. This week, I’ve planned and managed my time well. I’ve done lots of exercise – three zumba classes and I’ve cycled most days. I’ve also rested – though I’ve also done a lot of activity too. It could be down to all of those things, some of them or none of them! It could be something to do with what I’ve eaten this week. Or it might not. It could be that the antibiotics are working. But then again, it could just be a coincidence. The thing is, it’s always impossible to tell. So, instead of looking for reasons, I have to keep reminding myself just to be grateful and happy that I’ve had a ‘good’ week and not to worry too much about whether I’m going to ‘pay’ for it next week.

I also started the ‘expert patient programme’ this week. I was a little nervous that it would be too basic for me and unfortunately, thus far, that seems to be the case. I don’t want to be too negative – the people running the course are doing their best – but a crucial thing missing was some sort of assessment of how much we already knew or did to self-manage our chronic condition. I also found it very passive – we were talked at a lot, and as a professional facilitator, I’m used to making my classes much more interactive. I’ll try and keep an open mind for next week, but thus far, the main thing that I’ve got out of it is that I already AM quite an expert patient, and I already have a lot of tools to help me self-manage.

The other thing that the course did throw up was a reminder of how diverse people with chronic conditions are. Every person had a different condition, even if some of the symptoms or issues might be the same. I did struggle not to feel guilty that I’m physically relatively well off compared to some of the other people on the course, and to feel grateful instead, but it was difficult to do that. Especially given how active I’ve been able to be this week.

Finally, just a thought. I notice that, thus far, I have not woken up with an arthritis flare-up on days when I go to my zumba class. Is this a coincidence?

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2 responses to “A good week

  1. I am curious if you are on antibiotic therapy only? I have previously failed plaquenil and methotrexate, have been taking simponi and had a dermatologist add minocycline. I was hoping the minocycline would work and I could have my rheumy take me off the simponi (was on that for 6 months). Both the minocycline and simponi together were not working like I hoped and the rheumy is taking me off the simponi due to blood levels.
    It sounds like you are doing pretty well with your current therapy.

  2. Hi Emmy,
    I’m taking plaquenil alongside the doxycycline antibiotics. Whether it’s working, it’s still difficult to tell – I’ve had two good weeks in a row now, with only mild flare-ups, but that could still be nothing to do with the antibiotic therapy. I hope you find something that works for you. It seems to be such a lottery in finding something that works. Good luck.

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