Tags: aches, arthritis, exercise, fatigue, fibromyalgia, joint pain, knee, neck pain, pain, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), sleep, stiffness, stress, tiredness, weather, work
Well more split Penguin really – my right side is ready to take on the world this morning, but my left side just wants to go back to bed with a hot-water-bottle (or perhaps Enormous Cat on hot-water-bottle duty). This is not my usual pattern – usually I have, for instance, a bad knee and a worse knee, or a pair of bad shoulders, but this morning everything on the right is fine but my left hand, elbow, shoulder and knee are all stiff and painful!
I rather suspect that this has as much to do with fibromyalgia than it does with RA, because although the knee and elbow feel joint-related the shoulder is definitely muscular … well, when I say definitely it’s actually hard to be sure I find, but it doesn’t feel like the usual rheumatoid arthritis pain. I’ve had a few problems in the last few days with it, having foolishly swung round to grab something behind me on Saturday and then found myself curled up in a ball on my chair going, ‘Ow, ooops, I really shouldn’t have done that’.* Unbelievably I then did exactly the same thing twice on Sunday! It’s such a dumb thing to do for someone who knows damn well they get problems in neck and shoulders! I blame the fact that they’d felt so good lately that I’ve been less aware of having to be careful … which I suppose is something I really can’t complain about.
Oh well, I have a mountain of work to get through today thanks to the over-enthusiasm of a colleague on Thursday who, forgetting I was on my own for the first half of the week, may have bitten off more work than we can chew, so I’m going to have to let the right side rule!
*This is the expurgated version
Tags: embroiderers guild, hands, RA, Rheumatoid arthritis, silk, spinning, wool, yarnscape
I said in my last post that I’d post about the spinning day, so here we go!
I had a grand day out on Saturday – as previously mentioned a friend and I (and nine other ladies) had a ‘Spinning with a Drop Spindle’ workshop with Alison from yarnscape. Like all speakers for our branch of the Embroiderers Guild, poor Alison had to do a talk on the Friday night AND a workshop all day on Saturday. We work ’em hard! She turned out to be a fascinating and engaging speaker though, and an excellent tutor.
I discovered the whole concept of archao-linguistics at her talk – something I want to find out more about … if I ever have time. Absolutely fascinating. You can trace a technology such as glass-making or weaving around the world, seeing when it was adopted into different cultures etc., because as it’s adopted, a culture wouldn’t have a word for it so would tend to use the word of the culture or person introducing it to them… so you trace the words and the rest follows from there. Cool!
We all had a great (if frustrating) time at the workshop on Saturday. I think learning spinning is inherently frustrating – there were an awful lot of ‘aaaah’s and ‘urrghs’ early on in the day, even though Alison very wisely started us of gently with plying and unplying ready-made yarns and only moved on to fibres later. I think I know why it’s called a ‘drop spindle now – not because you let it dangle as you spin; rather because the dratted thing keeps dropping! Fortunately the groans were followed by more and more happy noises as people finally found they’d got the hang of it … or in my case ALMOST got the hang of it!
I was quite concerned, given the very changeable but fundamentally damp weather we were having, that my RA would play up and make holding the spindle and yarn and fibre (in hands, knees, mouth and any other available appendage!) Thankfully it didn’t, and neither did my friend’s – she’s the one I’ve mentioned before who also has RA but who I actually met on at a quilting group. However, Alison says we need to practice ten minutes a day if we’re ever going to master this (or words to that effect) and my hands are playing up a bit today, so it’ll be interesting to see if it makes things worse or doesn’t make any difference. One good thing is that the spindle itself (this particular one that Alison provided anyway) is very light, and one of the things we spun was silk, which is of course incredibly light, but even a handful or so of wool isn’t exactly back breaking, so I think it might be fine.
I’m sure if things were REALLY swollen it would be completely hopeless but luckily I tend not to get really swollen; just a bit on the achy side now and then … or in fact now! Off to see what effect spinning has … I hope none!
Yup, twenty minutes of spinning, one dropped spindle and two broken threads (over twisting!) later, I can safely say it’s not hurting! In fact I feel slightly better for it!
The National Rheumatoid Arthritis Society (NRAS) in the UK has a section on ‘Health Unlocked’ which is a networking site for patients and care givers for all sorts of conditions. The NRAS site on Health Unlocked is here. Some parts of the NRAS site can only be viewed by NRAS members (or which I’m proud to be one) but others are open to anyone who joins Health unlocked (which is free). The thing that most impresses me (even if they won’t link to my blog (or anyone else’s) presumably for fear of being thought to condone the terrible things we say ) is they have a ‘community blog’ where anyone who’s a member of NRAS Health Unlocked can just throw up a post – no mess, no fuss, no need for a wordpress or blogger account, and no need to worry about regular posting, statistics etc. You just post your thoughts, frustrations, feelings, requests for advice etc. and lots of like-minded people read them and post replies. It doesn’t matter if you only post once, and if you want you can post every day (or several times a day) then you’re very welcome to do that.
Of course it is, and it has to be, ‘policed’ by NRAS – so I suppose one isn’t quite as free as if you have your own blog. I probably wouldn’t, for instance, post factitious comments about my doctors and nurses on there! But it works – it really works… there’s lots of interesting content and discussions on there, and it’s also an opportunity for people who really don’t feel well enough to maintain a blog of their own (or who just don’t want to) to still get their thoughts heard.
I have to confess that my initial thought was, ‘Community blog? I don’t need that. I’ve got a blog.’ I was wrong – I’m hooked! 🙂
Once again, well done NRAS.
Tags: arthritis, consultant, doctor, GP, NHS, physical therapy, physio, physiotherapy, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), thyroid
OK, here’s the thing – the geniuses at my local NHS physo department (or should that be genii?) have decreed that in order to ‘be in line with the private sector’ they will only give any patient a maximum of six appointments before they kick them out. (The last three words are, of course, my terminology and not theirs!)
I asked Lovely Physio how this was ‘in line with the private sector’, as I had had to have quite a bit of private treatment before I got into the NHS programme and oddly enough they hadn’t been anxious to see the back of me after six appointments. No surprise there – I was paying them. Why would they want to be shot of me? She said something like, ‘I have no idea, but that’s how they’re presenting it to us!’
I suspect the idea is that by ignoring the fact that there are people with chronic conditions who can benefit enormously from regular therapy and pretending that everyone they see can be ‘cured’ in six appointments, they can massage their figures by getting the waiting list down from the current five weeks to a more ‘in line with the private sector’ one to three weeks.
The complexity of the system emerges from the fact that it’s general practitioner budget that pay for this treatment, but once you were being treated, until now, it was up to each physio to decide when and if to discharge. The GPs had little or no say, but they had to pay. So the idea is that you now have your maximum of six appointments and then go back to the GP if you feel you need to still see a physio, to get re-referred, as I mentioned in the previous post. The GP can, of course, say no. I suspect if I see the one that knows me she would say yes … we’ll have to wait and see, but even if she does we’re looking at a five-week waiting list right now.
One silver lining in the cloud – they have an SOS system whereby if I need to see my physio in the next couple of months I can phone and make an appointment saying I’m on the ‘SOS list’. I can then go in under that and have maybe six appointments then before getting kicked out! Hopefully I won’t need to see her in the next two months, but last time I thought that I only lasted three weeks …
Unfortunately I feel I have very little fight in me at the moment – I don’t know if that might be something to do with the thyroid issues i might or might not have, but that’s the way it is!
Tags: arthritis, fatigue, medication, pill tray, pills, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), sleep, stress, tablets, tiredness
I wondered why I was feeling so peculiar this morning … put it down to the fact that hubby and I both slept terribly last night, as did half of Norfolk if hubby’s patients’ comments are anything to go by. Now I wonder if it was more than that.
When I got home this evening I went to take my evening pills (augmented at the moment with antibiotics for the lump doing Vesuvius impressions on my arm) and found it empty.
I then had a vague memory of taking my pills after breakfast this morning and thinking, ‘Odd that I forgot to take them before breakfast as I usually do!’
You guessed it – I didn’t forget to take them before breakfast. I had my evening pills about twenty minutes after my morning pills.
I think I should probably be panicking and phoning NHS Direct and stuff, but given that that was now nearly 12 hours ago and I’m still sitting here writing this, I figure there’s probably no need. Luckily the only apparent ‘side effects’ were the desire to eat a horse (not literally of course, although who knows what went into the pasty I ended up having, most unhealthily, for lunch) and a feeling of general wooziness which may have had nothing to do with it given that a) I did have a lousy night and b) I’ve been feeling dopey all week!
Tags: arthritis, fatigue, fibromyalgia, RA, Rheumatoid arthritis, rheumatoid arthritis (RA), tiredness
One really important positive I forgot to add to my last past was that because I already have RA I’ve been through so much of the crap that other people have to deal with when they first get their fibromyalgia diagnosis! I already know ALL about pacing myself (OK, so I don’t do it so well, but I know all about it), I’ve already learnt to deal with the guilt that comes of telling friends I don’t feel well enough to visit or whatever, and I’ve already learnt to live with the, ‘You can’t be ill – you look fine,’ attitude of people that don’t know me well. Perhaps most importantly, I have learned to tell my loved ones when I feel like death warmed up, and not to expect them to know as if by magic. Recently the importance of actually telling them when I felt pretty good also dawned on me – after weeks of feeling lousy, if I have a good day it cheers me up enormously, so it’s important to share some of that cheer with hubby, my mum etc!