A bit of an update – I can’t believe it’s been so long!

October 15, 2014 at 1:35 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 4 Comments
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I can’t believe I haven’t posted since June. I wish I could say that that’s because I had nothing, RA-wise, to post about, but that wouldn’t be strictly true. In fact throughout June, July and August I probably did have ALMOST nothing to post about, but, although I’ve kept off those dratted antiinflmmatatories, things aren’t quite so hot now.

It’s just little niggly things at the moment – niggly knees mostly, as it always is with me, plus waking up in the night and finding my right-hand index finger is very stiff and very painful. I have a horrible feeling this relates to my increase in crocheting lately, and I’m wondering if I’ll be able to complete my Diploma in Crochet … although thankfully there’s no time limit so if it takes me a week to crochet a 4″ square, so be it!

And talking of crafts, I’ve just been to the Knitting and Stitching Show at Alexander Palace – a 3.5 hour journey there, mostly by coach, a 4 hour journey back (due to the coach almost breaking down but managing to limp to our drop-off point in the end!) and a loooong day browsing the exhibitions (so-so), trade stands (fabulous yearly treat for a rural type with few local craft shops!) and enjoying a workshop too (Dorset button making). We went on the Friday and it knocked me FLAT for the rest of the weekend but it was worth it!

I also had my hospital appointment not long ago. To my astonishment it went very well – they called us in individually, so again we didn’t have to line up like ducklings behind the mother-duck nurse, and there was a new rheumy nurse there (well, new to me, and young) who was absolutely delightful – she hasn’t had the soft, caring side knocked out of her by working too long for too little and too many hours at a time … yet. She was very sympathetic and very helpful about the knees, which were playing up at the time, although more from the medical (go on, have them drained, it’s not that bad – hah, like she’d know!) side than the practical ‘help yourself’ side of exercises, cold compresses etc. And thereby lies, in my non-expert opinion, one of the biggest problems with any giant organisation such as the NHS. It’s inevitable that everyone has their own specialties, but they do tend to get siloed. She didn’t offer me physio – but then again … I didn’t ask. In all honesty I didn’t feel I needed it, and perhaps neither did she! I know how to manage the low-level pain now – sometimes I may need reminding, being a dopey penguin, but I do know!

And that lack of ‘joined up thinking’ leads to the next thing – I got a letter recently asking me to ring the surgery to discuss ‘some blood results from the hospital’. Slightly worrying that – especially as it arrived on a Thursday, I didn’t get it until Thursday night and I was off to London on Friday, so couldn’t ring until Monday. Anyway, I rang on Monday. ‘Oh’ says the doc. ‘They want us to check your cholesterol risk.’ And ‘quite right too’ I hear you say. ‘You’re overweight and you should do something about it and they’re right to be vigilant.’ Well, yes, but here’s the thing … the surgery themselves had just checked my cholesterol about three weeks before and established that I was low risk.

If the nurse at the hospital had asked me about it, instead of sending me off for bloods and not even telling me she was checking that, I could have said, ‘They’ve just done that at the surgery. This is my level, I’m apparently low risk.’ Instead, lovely as she was, she wasted the following resources:

  • A blood sucker (aka phlebotomist)
  • The lab doing the work on the cholesterol
  • The hospital secretary
  • The surgery secretary who sent out the letter
  • The GP who had to call me back and discuss what we’d discussed three weeks before

‘Joined up thinking’ is no longer the buzz phrase of the day, and it sadly didn’t work when it was, but a little bit more of it would be a wonderful thing.



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  1. Polly, it’s great to hear from you, but not great to hear that you have a case of the niglies! Sending hugs across the pond.

  2. Hi, Penguin! Great to hear from you! Did I hear right that the summer in GB was very nice this year? Hope so, and hope the fall is a nice one, too. One of these days I’ve just got to get over there to visit! ๐Ÿ˜€ Fingers are crossed!

    I hate when the knees go niggly. It’s a shame we rely on them so much for walking, sitting, standing, and etc., isn’t it. Nice that the new nurse was so pleasant, even if she was sort of fixated on the medical remedies for problems. Maybe next time you can tell her how real RA patients feel and what they’d like to learn from their caregivers. Can’t hurt, right?

    Take care. Sending anti-niggly thoughts in waves at your knees. ๐Ÿ˜‰

  3. I clicked over here with the full intention of sending a message to ask if you had died. Phew! Glad you’re back – less glad things hurt.
    I’d have had to tell the dear nurse that whatever my cholesterol risk profile turned out to be I wouldn’t have been taking statins anyway. Ten days left me in such a state it took a year to get back to where I had been before. Besides: they only have any protective effect in women who have already had a cardiovascular event (e.g. heart attack, stroke). My heart problems don’t count as one so they aren’t needed. The cardiologist is fine about it.

    See you sooner than 4 months…

  4. Thanks everyone for the welcomes back! ๐Ÿ™‚ LOL Eileen – nothing that drastic … by a long way! ๐Ÿ™‚ I’ve heard a lot of bad things about statins from a lot of people – then again there’s plenty of others that are kept alive by them. I’m glad you don’t need them – especially given what they did to you! ;-(

    Wren, telling how real patients feel is apparently what this Future of Health thing is all about – so lets see if it actually makes an ripples in the real world. I hope so! ๐Ÿ™‚

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