Tags: computers, flare, RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), stress, Ulric Computers
As someone in the office said today, ‘I love what they do … I just wish they did it better’. I had an unbelievable computer day yesterday. My work computer finally died. We won’t go into the fact that I’ve been saying ‘the C drive’s dying’ for a couple of months and the IT guy’s been going, ‘Oh no it isn’t …’ Suffice it to say, it did.
After one HELL of a day I went out for a very pleasent evening of sewing and chatting with the local quilting group (where I don’t quilt but do sew and chat), came home and thought ‘ better check my email’ … so I turned on my laptop and it broke. Honest – just like that. The on button became an ‘in button’ – permenantly pressed in and fallen down inside the computer.
I really thought that was the end of my computer, but I’d gone through stressed and out the other side yesterday and I was, extraordinarly, completely calm! I just decided I didn’t have room or energy to worry about anything else and what would be would be.
I did think all the stress was bringing on a flare last night, but it hasn’t happened – whether that’s because of my determination not to get stressed about this latest thing and to calm myself down, or whether it was never going to happen anyway I shall never know.
Anyway, to ‘cut stories long and short’, I phoned the local IT shop this morning, explained the situation, got a very poor prognosis but ‘bring it in and we’ll look at it …’ I did, he did, he jammed a screwdriver in a place I wouldn’t have dared tamper with and yanked off part of the top and then stood there going, ‘But … but, but, but, but… but …’ interspersed with ‘That’s not supposed to be able to happen …’ and ‘In all my forty years in the business I’ve never seen anything like this …’
Astonishingly the story has a happy ending – or perhaps a happy middle as it’s not totally resolved yet. He showed me where I needed to apply some superglue (of all things!) and then how to put on the bit he’d yanked off, and showed me that the laptop still works! Woohoo! He didn’t charge me a penny and even said if I was nervous about putting the bit of cover back on I could bring it back in and he’d do it for me. That’s customer service for you – and I’ve never even been a customer in there. But you know what – if I want a PC in the future, that’s the first place I’ll look, for sure! A ‘big shout out’ for Ulric Computers!
I shall leave hubby to do the supergluing – feeling far too fumble-fingered after all that, although really I’m sure none of it was anything I did!
Tags: birthday, consultant, flare, occupational therapy, OT, physio, physiotherapy, RA, RA flare, Rheumatoid arthritis
At last I’m on my way out of a rather prolonged flare! While I’m sure that my consultant would be pleased to point out that it wasn’t much of a flare – I mean I didn’t even need a steroid shot – it was quite enough of one for me, thank you!
I had a very good birthday this year, in spite of being in the middle of the flare. Hubby had the day off too, which he doesn’t often manage, or at least not to coincide with mine, and we had a leisurely morning in Norwich including a trip to the Castle Museum and lunch at ‘The Waffle House’. Because of the whole flare thing we decided to come straight after an early lunch and I spent the afternoon lounging around in bed reading some of the many great books (mostly embroidery-related) that I’d got for presents, before heading off to Mum’s for a yummy meal in the evening. While I’d have liked to have been able to DO more on my birthday, it was still a jolly good day!
I suppose at least I’m finally learning to pace myself. Talking of which, the OT is NOT in my good books at the moment. I drove for forty minutes in stinking traffic through rain and hail and sleet and snow and fog (and semi-darkness for part of it) to get to my OT appointment only to be told, ‘She’s gone home’. Luckily for both of us I suppose a) I like her and b) I know she wouldn’t do that deliberately and c) she phoned and apologised profusely this morning.
I told her she could make it up to me by fitting me in between physio and a hair appointment next week, which she is doing. I shall come away feeling thoroughly pampered after all that: not quite a luxury spa treatment, and believe me, our local hospital doesn’t bear much resemblance to a luxury spa, but the closest I’m likely to get to one for a while!
Tags: birthday, flare, pain, Rheumatoid arthritis
Two days until my birthday and I’m right in the middle of a flare! On the bright side (which is what this blog is all about, although I have to remind myself of that right now), I’ve got most of a day off tomorrow and a full day off on Tuesday, and mum cooking dinner for us Tuesday night (chopped liver to start (sounds disgusting, ISN’T!), roast chicken and trimmings, and a naughty surprise desert have been requested).
Hubby has the day off on Tuesday, which makes a nice change. I just hope I feel up to doing something nice with the day!
Also my birthday starts early – Today Weeny, she of the not-so-great sympathy skills, and her hubby are taking us out to lunch. Pressies are piling up on the table downstairs and looking festive, ocassional bits of sunshine are peeping out through the gloom and the forecast for Tuesday is pretty good, so the outlook’s not as bad as it could be in spite of the various creaks and groans eminating from the penguin (and from hubby at having to listen to me creaking!)
Tags: anti-TNF, appointment, arthritis, consultant, flare, GP, hospital, medicine, methotrexate, MTX, NHS, NRAS, nurse, nurse practitioner, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology
It’s official – I had a flare at the end of October/early November … and more, I suspect. No kidding. I think I knew that, but this time it actually showed in the bloods! That’s a first for me!! I’ll give the consultant his due though – he was as amazed as I was that the bloods actually matched with how I’d felt, so he does at least appreciate that one can feel totally lousy and have no indication in the blood tests whatsoever, and vice versa.
Anyway, we agreed that things were going pretty well at the moment and that it didn’t seem sensible to go on increasing the MTX willy-nilly if things were OK. I explained that I knew I was much, much better than last time I’d seen him (which I think was well over a year ago, as I’ve since seen a registrar and a nurse but not the man himself), but that they certainly weren’t perfect, and for the first time he admitted that I probably wasn’t going to achieve perfect … I’d kinda figured that out, but still a slight blow to hear him say it!
He then cheerily added that never mind, compared to what he usually saw I really wasn’t bad at all. He has no idea just how bloody irritating this comment is – he’s said it before. I think last time I was too dazed and generally fed up to actually respond, but this time I was properly prepared and I pointed out that I wasn’t comparing myself with his other patients – I was comparing myself to myself before this whole R.A. business started, and that when I do that I don’t see my current self in a terribly favourable light. The nurse who sits in with him (as a chaperon and to make sure he remembers to fill all his forms in!) was nodding sympathetically and understandingly behind his back. I got the feeling she’d heard this comment from him before and had thought exactly what I was now saying. Anyway, he sort of blinked a bit, looked rather surprised at being answered back to and mumbled something that was vaguely conciliatory … I think.
Then he bid me to enter his dream world by saying, “If the MTX doesn’t keep things under control, if you have another flare, we’ll put you on these terribly expensive new drugs called biologics or anti-TNFs.” (He does tend to forget I have a brain.)
I snorted – very rude, but it just sort of happened! I said something like, “Have to be one hell of a flare for the NHS to let me on to those!”
“Oh no,” says he, “just an ordinary sort of flare.”
Well, that’s certainly not the impression I’ve been given by the NRAS magazine, the people on the NRAS forum (other R.A. sufferers, generally in a much worse state than me, who have failed the ‘DAS test’ for anti-TNFs), the press, people I met in Barcelona, the nurse practitioner, the GP, the practice nurse … just about everyone else really. Since this is the man that told me I should see him in three months last time, when it was totally impossible for anyone to get an appointment closer than six months, and the man who told me that all I needed to do if I had a flare was phone and I’d get straight through to someone on the helpline (not true as it’s usually unmanned and then they don’t call you back) I don’t feel too filled with faith about the biologics comment either! I dare say though that his “ordinary sort of flare” would be the ordinary sort of flare that his other patients have, not my little fizzle!
Well, hopefully the MTX will now do its job properly and I won’t need to ever find out whether he’s living in a dream world or I’m just being unnecessarily pessimistic about my prospects for biologics!
Tags: aches, arthritis, flare, Hugh Laurie, Jeeevs & Wooster, Miranda Hart, pain, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), Stephen Fry, telly, TV, weather
Ouch, ouch, ouch.
It rained all day on Friday, and I had to come home early from work because I was in a significant amount of pain and just not working effectively. It is entirely possible that teaching ‘the boss’ to crochet was not the best move for either my achy hands or our workload, but it was fun!
Ohoh, I thought, here comes a proper flare … then, curiously, in the evening I felt much better (even though it was still wet). The next day I woke up with one of my approximately five-monthly periods! I’ve said before that I often find I’m completely R.A. symptom free while menstruating, and sure enough I was almost symptom free over most of the weekend …apart from period backache of course … well, there’s always something.
It probably helped that we had a beautiful day yesterday, sunny, bright, deep blue autumnal sky, gentle breeze, trees clinging on to the last of their leaves, almost sparkling in a variety of fiery hues … lovely. (Why isn’t fiery spelled firey? Sorry, I have a tendency to go off on tangents like this … you may have noticed.)
Unfortunately it’s been pouring most of the night and it’s still pouring now … and I HURT! ‘The boss’ has a day off today so, as there are only the two of us, I ought to be here manning the (dead quiet) phones, just in case I miss something vital. Not sure how long I’ll stick it though! The problem is, the moment I do decide, ‘That’s it, I’ve had enough!’ and go home, I know some client will ring with something vital. (I even know which client … the same one that picks every single occasion when I’m away to find something urgent that needs doing!)
So I shall probably struggle manfully (womanfully, penguinfully?) on and just collapse these evening in front of some silly comedy on the telly or something. At least I know there is some silly comedy to collapse in front of. There’s Miranda at 8:30 – I’m still not sure about this. It’s only had one outing so far, last week, and it’s very old-fashioned Victoria Wood style humour, pretty basic gags, but the lead, Miranda Hart, is very good. Then there’s huge tracts of the wonderful ‘Jeeves and Wooster’ series to watch, as Hubby got the whole shebang from my bro for his birthday. It’s the series with Stephen Fry and Hugh Laurie in the eponymous roles. (Not sure I’ve used eponymous correctly there, but it’s a great word, isn’t it?) It ran to four series and is ideal to watch when feeling ‘carp’. The script takes a few liberties with the original P G Wodehouse stories, but I rarely find it worries me, and Fry and Laurie have absolutely become Jeeves and Wooster for me, to the extent that when I read the original books I hear Stephen Fry and Hugh Laurie’s voices in my head! (Hmm, afraid that last sentence makes me sound crackers, but never mind … I probably am.)
Right back to work … oh joy … Mantra for the day: “Me gusta mi trabajo, Me gusta mi trabajo, Me gusta mi trabajo…” (I like my work in Spanish … Hoping the mantra might a) help me learn Spanish, and b) convince me that me gusta mi trabajo! (I do … really I do … just not today!)
Tags: fizzle, flare, R.A., RA, rain, Rheumatoid arthritis, weather, weather conditions, wet
Today I got my excellent and informative copy of the National Rheumatoid Arthritis Society magazine. In it is a very short piece about a very small piece of Norwegian research showing something that will come as no surprise to many RA sufferers: levels of RA pain may be affected by the weather.
I can’t tell you who the researchers were, what research they did or how they reached their conclusions because NRAS, for all the magazine is interesting and informative, haven’t seen fit to share any of that information with us. However, they said that 61% of the people they studied were affected by the weather (although they only studied 36 people), and that different people were affected by different weather conditions.
Well, I’ve noticed in the past that I certainly feel it before a storm, and I’m wondering if my coming and going fizzle (it’s fizzing away merrily again today after a ‘day off’ yesterday) is related to the fact that we’re having lovely, sunny days followed by very wet, rainy nights. Then again perhaps it was the lack of chocolate pizza last night?
I’m afraid I’m too lazy to keep a weather/RA diary and try to work it out, and anyway there are so many weather-related factors that it might be hard to do that without a mini weather station in the garden!
I hope I’ve spelled weather and whether correctly throughout – I’m very tired, so not promising anything on that front!
Tags: aches, arthritis, fatigue, flare, joint pain, pain, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), sleep, tiredness
I was getting to the point yesterday afternoon where I was fairly convinced I was having at least a fizzle … some reasonably significant pain in the afternoon, tiredness too, and by the time I went to bed I couldn’t find a comfortable position because however I lay something hurt.
I’d had a busy, fun evening and a very unhealthy dinner! Yesterday was the night of our local sewing/quilting/crafting/whatever group and as a friend of mine who works locally but lives some way away also goes along, I asked if she wanted to come back to ours for a quick bite to eat before we went. I warned her it would only be pizza because we were in a hurry … so not a healthy start there … and she kindly contributed a chocolate putting with chocolate sauce AND cream for afters! Oh dear … but yum.
Anyway, here’s the thing … I feel much better today! So perhaps pizza and chocolate pudding is my ideal RA diet?
Erm no … before i got lots of angry comments, I’m not entirely serious! But it does show how careful you have to be not to attribute RA (or lack of it) to things without doing some serious research and testing!
Tags: arthritis, doctor, exercise, flare, flare-up, hospital, neck pain, NHS, nurse practitioner, physical therapy, physio, physiotherapy, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology
Wren posted a comment asking about physio and I thought it might get a bit long-winded for a comment answer, so I’m making a post out of it!
This was Wren’s comment – sorry Wren, just realised that this answer is going to come a bit too late for your appointment! “On another subject: How often do you see your physio (physical therapist)? What do you do at the appointments? Are there special exercises? I’m curious because I keep reading of others having PTs they go to frequently, but this is something that I’ve never done, or even had suggested by my doc. I’m seeing him on Saturday morning, and I plan to ask about it, but in the meantime, how does this work for you?”
I personally see my physio every two weeks at the moment, but that’s a timing that we decided between us and it’s changed over the months I’ve been seeing her. I started seeing her weekly when things were really bad and we’ve moved on to two weekly. We tried three-weekly but that didn’t work out – by the time I saw her after three weeks my shoulders were in agony!
There are indeed special exercises, but again they’re entirely individual to each patient. I think it’s fair to say that generally you don’t do any exercises during a flare, reduced exercises during a “fizzle” (if you have fizzles, as I do!) and you try really hard to do them when things are fine, but frequently forget! Luckily I have a very understanding physio (this is afterall the woman who recommended a year’s supply of cake, but she says I’m not allowed to post that story!!) and she appreciates that it’s hard to remember to do the exercises when things are good!
What we do at the appointments is 1) Talk through how I’ve been over the last couple of weeks since I’ve seen her 2) Decide what needs doing this time 3) Do it. Usually, what needs doing is either ultrasound on my knee(s) or ultrasound on my neck and shoulder(s) or both. Again, I’m lucky to have such a flexible and understanding physio. By the time I got to see her, I’d been seeing another physio privately for months. Long story – see here and we’d established that ultrasound works for me. Again, it’s a very personal thing. Some people find acupuncture fantastic, especially, apparently, for knees – I don’t. Some people find ultrasound completely useless – I don’t.
If there’s a different joint giving me problems we’ll talk through that and discuss if there are any exercises that might help, or whether ultrasound, TENS etc. might help.
I have a whole selection of exercises that I should do regularly for my neck, shoulders and knee, and a bunch of others to ease morning stiffness in other parts of me. The knee, neck and shoulder exercises are more to strengthen the muscles in those parts, so that they can do a better job of supporting the joints, rather than to actually do anything to the joints themselves.
The attitude of the nurse practitioners is ‘use it or lose it’, so the consensus seems to be that the more you exercise (within limits), the better. Not being the world’s most active person the only time I’m likely to overdo those limits is when I’m having a flare (where minimal exercise is fine) or if I’m doing crochet, embroidery etc. and don’t want to stop although my hands hurt!
I hope this helps explain the whole physiotherapy/physical therapy thing a bit, but it is, I stress again, only my own very personal viewpoint, and I know that every physio is different (because I’ve seen at least five over the years) and every patient is different. I reckon if you find a physio that suits you it can only help, so why not give it a try?
Tags: fizzle, flare, pain, pain free, RA, Rheumatoid arthritis, stiffness
I’ve had several virtually pain and stiffness free weeks now – fantastic! But for the last few days I’ve woken up just sliiiiiiightly stiff, and had little bits and pieces of rheumatoid arthritis pain in the evenings and at night … certainly not a flare, not even a fizzle, but just a bit worrying.
I have my six-monthly hospital appiontment at the end of next month and I was joking with my physio the other day that everything would probably jog along very nicely, with just the odd twinge and few minutes of stiffness, until the day after my hospital appointment,when I’d get a flare.
I hope it was a joke … especially as my hospital appointment is 23 December!
Tags: arthritis, flare, Let's work together, RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), work, World Arthritis Day
It’s World Arthritis Day and this year’s theme is ‘Let’s Work Together!’ It’s got me thinking about how lucky I am to still be in work considering I’ve got this dratted disease/illness/condition, whatever you want to call it.
I’m very grateful that I can still work, in spite of the R.A. It’s been a difficult road to travel, but I feel not nearly so difficult as for those in employment. Yes, it’s “mild R.A.” but when my symptoms are bad it doesn’t feel mild to me! As a self-employed person I don’t have to worry about breaking the news to the boss, explaining why I can’t play golf with the company, or put up with silly comments or lack of understanding from colleagues. I only have one colleague and she’s very understanding … if she’s not then she does a good job of hiding it, since I’m her boss (at least officially – we suffer from role reversal now and then).
There has been some research, sited in the excellent book on Living a Full Life With Rheumatoid Arthritis by Jasmine Jenkins (a delightful lady whom I had the pleasure to meet in Barcelona – Gosh – who’d have thought you could name-drop in the world of rheumatoid arthritis?), that suggests that self-employed people are likely to remain in work longer than those who are employed. If I remember rightly, since I can’t lay my hands on the book right now, it was suggested that this is due to difficulties with employers. On a bad day I wonder if it’s more to do with desperation – there’s no going off sick and still being paid by the company! On a normal day though I’m grateful that I can take small amounts of time off here and there to cope with a flare, and that I have been able to cut my hours back to normal full-time hours from slightly in sane morning and evening and weekend hours that I used to work, without having to justify myself to anyone except myself.
It would be good if World Arthritis Day, and indeed the My Day for RA site, brought some real understanding of rheumatoid arthritis to those who don’t have it but who have friends, family or colleagues who do, to lighten the load of those people in employment who have to put up with R.A. on top of all the usual frustrations of a job!