For the last two days I’ve woken up barely able to move my left knee and feeling pretty horrid. Two days ago I woke up saying ‘I feel carp and today’s going to be a rubbish day’. Carp is, of course, a euphemistic anagram. Sure enough I felt fairly carp all day and the day was rubbish. Yesterday I woke up saying ‘I feel carp again and today’s going to be rubbish’. Try some affirmations, said hubby sleepily. ‘I’m a wonderful, fantastic super-penguin and I feel carp and today’s going to be rubbish’ I said; and guess what? I was right.
So the question is, was I dooming myself to a foul mood and everything going wrong all day by starting off like that? Well … maybe. One of the reasons Tuesday was so bad is that I’d made a stupid mistake in the morning and then spent half the day ‘fire fighting’ to correct it. Maybe if I’d started off more positive I wouldn’t have made the stupid mistake. I shall never know.
I have yet to test the idea that it’s a self-fulfilling prophecy as this morning I woke up feeling pretty good. ‘Today’s going to be better’ I thought, and it was. But then since I was actually able to run up stairs and go for a walk at lunch time it was bound to be better!
I suppose I need to wait for another day when I wake up feeling lousy and then try, ‘I feel carp, but I think today will turn out pretty good’ and see what happens! I’m no fan of being stupidly positive when ‘realism’ is more appropriate, but useful positivity in moderation might be worth a try!
Tags: arthritis, consultant, hydroxychloroquine, nurse, Rheumatoid arthritis
OK, that may not be a general rule but it seems to apply to mine! I had my first appointment with the ‘rhuemy nurse’ today – a.k.a. Rheumatology Nurse Practitioner – a very nice lady who kindly sorted out my next consultant’s appointment (he’d forgotten), gave me a letter for my GP asking them to continue prescribing the drug I’m on (hyrdroxychloroquine) because he’d forgotten, and gave me the hospital’s own rheumatology support line number because … he’d forgotten.
Well, I suppose the important thing is that he’s good at knowing whether people have rheumatoid arthritis or not, and what to do about it – admin is for us lesser mortals.
Had a great, but exhausting weekend, staying with a friend and doing our biannual Lakeside shopping trip. For those not in the know, or with zero interest in shopping, Lakeside is a large shopping centre in Essex, on the outskirts of London, and my friend Debbie and I save up our pennies and make a shopping pilgrimage about twice a year. Last time I spent far too much. This time I spent far too much time in coffee shops and sitting on benches instead! Thanks to the RA I just didn’t have the energy to be trying things on all day! So I spent £17.50 in total on boring stuff from M&S that didn’t need to be tried on (need I say more?) and that was it! Well, apart from umpteen lattes!
Tags: exercise, flare, flare-up, RA, Rheumatoid arthritis
I’ve been trying to lose weight for years with limited and yo-yoing success. Of course about the only symptom of RA I haven’t had in the last few months is weight-loss. (And I know that weight-loss can be a very serious problem for some people, so I shouldn’t be flippant!) However, on top of all the evidence that exercise helps anyone, there’s quite a bit of evidence that it specifically helps with RA, and that even if you’re hurting, provided it’s not a flare-up, you should carry on. I haven’t really managed to work out what a flare-up is exactly yet – some places say it’s when you have pain and stiffness, and then you’re in remission when you don’t; well I have pain and stiffness every day but it’s very variable in its intensity. Other sites/books say that some people will have pain and stiffness all the time but flare-up is more intense. So I don’t know if I’ve had a few flare-ups (days of relatively intense pain) or none, and it’s a treat I’ve got to look forward to! Anyway, the point is that I had a really bad day today – feeling ill as well as very stiff and in quite a lot of pain. Still managed some work, but then in the evening did my exercises and immediately felt SO much better. I’ve had a good week until today and yesterday was the first day I didn’t exercise, and today … bam!
Now it could be coincidence. ‘As a scientist’ as the great Kathy Sykes is wont to say, I know that could be sheer coincidence but I’m keeping an exercise/pain/food diary so hopefully if there is a pattern I’ll find out. In the meantime I feel very motivated to exercise for a change, which is great!
Tags: NRAS, RA, rheumatoid, Rheumatoid arthritis
I have just joined the National Rheumatoid Arthritis Society (NRAS) and as well as a pile of interesting bumph and a very informative newsletter all about RA, they sent me a link to their web forum. It’s one of the most active forums I have ever seen (and I’ve seen plenty). It’s packed with informative posts, but reading all about other people’s experiences really put my ‘mild’ diagnosis into perspective. I’m really very grateful that I have only mild symptoms compared to some of these people, but it’s quite inspiring to see how people support each other and soldier on. Having thoroughly depressed myself reading about what might, just might be to come for me in later years, I moved on to the ‘A bit of fun’ section of the forum and laughed until I had tears in my eyes. So thank you NRAS for a thoroughly informative, useful and entertaining forum!
Tags: RA, Rheumatoid arthritis
You’d think getting a pill tray (one of those things you put your pills in, with separate compartments for each day and morning, noon, evening and bed) would be quite easy, but it wasn’t.
First it took me a few weeks to overcome the psychological barrier – ohmegawd, what am I? Senile? A hundred years old? How hard can it be to remember to take three pills a day. Then three pills became four, and then four became six and I caved in.
So I went to the chemist and chose from a surprisingly wide selection of pill trays. At first I couldn’t find them, but then I thought ‘look for the old lady section’ (apologies for any elderly ladies I have just insulted) and sure enough there they were, along with incontinence products etc., which did nothing to improve my frame of mind about needing one. I chose one with slide-off covers for each day, as I figured that when my fingers weren’t working too well it would be easy to use.
I was wrong.
I got it home and went to put my plethora of pills in it – but Monday and Friday wouldn’t open! I could see it wasn’t terribly well made and the plastic sliders didn’t have very straight edges. I asked hubby to see if he could work it – he got Friday open with a struggle but couldn’t shift Monday. I took it back to the chemist and explained the problem. She tried it – I wish I could show you the faces she pulled as she forced the dratted things open, and then turned to me with a bright smile and said, ‘There you go – they do all work’.
‘Let me see if I can work it,’ I said, and sure enough I still couldn’t shift them. I explained that I had rheumatoid arthritis and if I couldn’t open it then it really wasn’t a lot of use to me. She looked dubious. After all, I don’t ‘look disabled’, whatever disabled is supposed to look like and I’m pretty sure she didn’t believe me. ‘Oh … well I’ll have to check out the back …’
Fortunately she came back shortly afterward with a different design, which had pop-up lids rather than sliding ones, and I can work that fine, although even that’s stiff some of the time (or at least I find it so!)
One would imagine that these things were made with the people who were going to use them in mind … but I have my doubts!
Still, I’m glad I’ve finally succumbed and got myself a pill tray – I’m fairly sure I was forgetting to take tablets sometimes and then taking two doses at other times, and I didn’t want to risk that with six to remember!
This first post is more a kind of baseline of reasons, rather than specific stuff that’s happening now. So here’s ten reasons for me to remain up-beat in spite of my (very) recent diagnosis of rheumatoid arthritis.
- I was born in 1968 and not 1948. Had I been born twenty years earlier and developed the disease at the same age things would be a lot grimmer; because
- the drugs available and methods of treatment have improved enormously in the last twenty years or so.
- I had an early diagnosis – apparently the current treatments work much better on patients who are diagnosed early. Because I was worried I had a repetitive strain injury and wouldn’t be able to carry on working I saw the doctor quite quickly, and;
- my rheumatoid factor test was positive. That seems a funny thing to be positive about, in itself, but it helped to lead to the early diagnosis.
- I have wonderfully supportive friends and family. OK, sometimes they say the dumbest things (sorry guys, but you do) and if I followed all the advice they gave me I’d have to cut myself into several pieces, as so much of it is conflicting, but it’s great to have them around!
- I work for myself. That’s a biggie! It’s not so great in that if I ‘take a sickie’ I’m simply not going to earn any money, but on the plus side, I can work the hours that suit me so long as I get the work done, and the only person I have to answer to is me … well, and my employees and my clients and anyone I owe money to, but I still would never trade it in for being employed if I could possibly help it!
- What I’ve seen of our local rheumatology department so far has really impressed me. I was rather dreading what it might be like having had prior experiences in this and other hospitals, either for myself or visiting friends, which to say the least didn’t impress me. One particular incident many years ago involved a four hour wait in the hospital pharmacy! For my last rheumatology appointment I had a consultant’s appointment, x-rays, blood tests and picked up a prescription at the hospital pharmacy in less than two hours.
- And the last medical thing for this list … nobody said, ‘It’s all in your head.’ I knew very well that it wasn’t, but that doesn’t stop people trying to suggest it sometimes.
- My hubby already does all the housework, so I don’t have to do any eyelash fluttering and saying ‘Darling, could you just … ‘ when I can’t lift up the Hoover or turn the tap on. (I do the cooking (most of the time), he does the housework (all of the time) … doesn’t sound like a fair division of labour to me but he says he doesn’t mind!)
- I have what a friend of mine has described as ‘the best EVER excuse to eat fatty and sugary food.’ She adds that, ‘as a supportive friend I feel I should help you out with it too!’
Let me just explain that last one. There are suggestions that fatty and sugary food make RA worse, that red meat makes RA worse, that coffee (heck!) makes RA worse … Now I can’t just cut them out because that’s not scientific – if it gets better it might have done so anyway. What I need to do, I reckon, is to have a super healthy diet for a couple of weeks and then to pig out on all the nice stuff that I probably shouldn’t be eating for a day or two. Then a further two ‘good’ weeks or so, then some more ‘naughty but nice’. During this ‘experiment’ I have to keep a diary of how good or bad I’m feeling, RA-symptom-wise. It’s no good just eating some cake and then saying, ‘I feel great’ or ‘I feel awful’ because if there is an effect it might be delayed … hence the absolute requirement* to eat lots of ‘bad for me’ stuff to see what happens.
*(A note of caution here – as one friend ‘helpfully’ pointed out, RA is not necessarily confined to ones joints – it can lead to coronary problems, so I won’t be going completely overboard on ‘silly’ food!)