December 27, 2009 at 11:16 pm | Posted in rheumatoid arthritis (RA) | 3 Comments
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Happy Christmas, belated Happy Hanukkah and Happy New Year everybody! Felis navidad e prospero ano nuevo.

I’ve had a lovely break so far, and some really ACE presents! One of my many New Year’s Resolutions is going to be to make more of an effort to give people things not on their Amazon wishlists as well as things that are, because although I’m always delighted to get anything off my wishlist (and I got some cracking presents off my wish list this year – an excellent mix of fiction, non-fiction and CDs), two of the best presents weren’t on there. Also I suspect the best present I gave was one that wasn’t on a wishlist either – a “Dr Who Scarf” crocheted for sister-in-law-to-be (aka Mrs Mooseface). It’s certainly the most appreciated!

My two ACE non-wish-list prezzies were an Encyclopedia of Machine Embroidery, which I’m actually reading cover to cover rather than using as reference book, it’s so good, and a little extra prezzie from Hubby (who got me a Spanish course for my main prezzie) – an NSD powerball. This is basically a gyroscope inside a plastic ball, but it’s also hopefully a muscle strengthening aid and definitely bloomin good fun! It took as most of Christmas afternoon to get it working at all as you have to start it off by winding a sort of shoelace around it and then swizzling it around until the energy builds up, and we just didn’t have the knack, but once Hubby worked it out and then explained it to me in words of one syllable, and with demonstrations to boot, we’ve really been enjoying using it.

If you want to see a demo they have a website here. I have to say though, I suspect most people with rheumatoid arthritis would be unable to grip the thing, either at all or at least once the energy has built up in the gyroscope, as it starts to feel like it wants to take off and take you with it. That’s a very strange sensation but definitely fun. I have to keep changing hands with it or my hands get too sore, but I am finding that I can hold it for longer and longer each time I use it – and I’ve only been using it for 48 hours, so it seems quite promising!

Perhaps I’ll take it into my physio when I see her later in the week to see what she thinks of it – but I’m scared she’ll say, ‘Good grief – you shouldn’t be using that. Stop it immediately!’ and it’s too much fun for that!


I wish I could live in the dream world my consultant inhabits

December 27, 2009 at 11:03 pm | Posted in rheumatoid arthritis (RA) | 2 Comments
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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!

Let it thaw, let it thaw, let it thaw …

December 22, 2009 at 12:21 pm | Posted in rheumatoid arthritis (RA) | 6 Comments
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Actually I’ve been rather enjoying our unusually large amount of snow … mostly! I’m sure the North North Americans and Canadians must be laughing, but we must have had all of about five inches in places – that’s LOADS for us! Apart from de-icing the car, which is always a slightly painful process that I need hubby’s help with, the snow doesn’t seem to have had any kind of bad effect on my rheumatoid arthritis, which is great! Of couse if I let myself get chilled then I stiffen up, but that’s the cold rather than the snow.

I did try to take some pretty photos when it was looking gorgeous the other day, but as I didn’t venture any further than our small back garden I didn’t get anything too spectacular! Hubby and I talked about going for a walk right through the weekend, but it never got past talking. At one stage he said, ‘I’ll go for a walk if you really want to…’ and I said that I’d been just about to say the same thing to him … so we didn’t bother! I’m sure I missed some great photo opportunities but then again the snow was a great excuse to stay in and warm and snug and cosy and got lots of City & Guilds embroidery stuff done!

However, even though I suppose a White Christmas would be kind of nice, I’m now quite ready for a thaw, thank you! Winter Wonderland is all very well, but I’d prefer safe roads and safe pavements!

Just when I think I’ve got a handle on this thing …

December 17, 2009 at 5:19 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 10 Comments
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I’m baaaaaaaaaaaaaaaaaaaaaack! Don’t suppose anyone missed me (sob) but if you did wonder where I’d gone, I’ve been quiet because I’ve been having MAJOR computer problems at work and major getting my City and Guilds embroidery modules done on time problems at home!

Yesterday I was completely convinced I’d sussed my R.A.! I know there’s a link with the weather and I know there’s a link with hormones. I haven’t kept a diary but I thought I saw a pattern emerging. The pattern I thought I saw was that hormones were in the lead – provided I was menstruating or there abouts then, regardless of the weather, I’d be pretty good. If was in the midst of hot flushes then I would be less good and even worse when it rained.

Of course that turned out to be far too neat and tidy! Today I’m menstruating again (oh joy!), grumpy as hell and full of aches and pains. Aaaaargh. Of course things are complicated by the fibromyalgia, but it all FEELS like joint pain right now (apart from the period-related back ache of course!) A little hard to be sure though.

It’s that time of year again …

December 6, 2009 at 6:57 pm | Posted in rheumatoid arthritis (RA) | 6 Comments
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The time of year when you start to feel really guilty (instead of just a bit guilty) about all those friends you’ve been meaning to write to all year but actually haven’t written to since last Christmas; the time when you realise in a last minute panic that you usually send said friends a small present in the post with the annual letter and you haven’t got them anything; the time when you start to receive cards from more organised friends and realise that yes, we’re actually in DECEMBER and it’s time to get on with it.

Yesterday, after the x-rays (just routine, took about three minutes, but journey there and back took well over an hour!) and between naps (still catching up from Wales trip) I wrapped ALL my presents … or at least I thought I’d wrapped all my presents. I was briefly very pleased with myself. Then I realised that two that were mail order hadn’t actually arrived yet and there were three of those annual letter friends that I’d forgotten to get anything for!

Fortunately I was visiting a friend in Cambridge today and we’d planned to go to one of these garden centres that make most of their money from non-garden related things. We didn’t even look at the plants, but we spent a good long time in their cafe and browsed their giftie bits and pieces, which nicely sorted out all three said friends.

I’m now feeling quite pleased with myself again because as soon as I got back I wrote the backbone of that annual letter. Obviously it’s not going to be a ’round robin’ letter – there’s no excuse for those these days; it’s too easy to make them personal by topping and tailing them and adding salient bits about the individual friends, and points that might be of special interest to them, but the ‘general’ news, such as the Barcelona trip, the fact that I’m still in gainful employment in spite of the recession and so’s hubby etc. etc. is all down.

I’m now worrying about the fact that the letters, ‘R.A.’ appear eight times on one side of A4!! It’s NOT that I’m letting it define my life, honest … it’s just that the Barcelona trip was a big feature of my year and well, that was all about R.A.! Tough – they’ll just have to live with it. I do! At least they only get it once a year.

The Railways Move in Mysterious Ways … but they move

December 2, 2009 at 8:59 pm | Posted in Me, rheumatoid arthritis (RA) | 6 Comments

Well I have to say it’s a semi-thumbs up to the ex-British Rail – no train was more than ten minutes late, and that’s out of eight trains (excluding the Underground) that I’ve been on in the last five days. It wasn’t all good news though – on the way to my friends in Wales, having had an excellent one-night stop with Maggie and family (taking in a surprsingly good school craft/Christmas fair), I had to go from Reading to Cardiff on a train that I had been told there were no reservable tickets for. I assumed this meant that they simply weren’t going to have reserved seats on that train, which does happen. Wrong!! Just about every seat on the train was reserved, but not for me: for just about every Welsh Rugby fan on the English side of the Severn … and one lone Australian. Yes, Wales was playing Australia that day in Cardiff! I have to say they were all incredibly well behaved, especially since most of them had obviously been drinking since pulling out of London at around nine-thirty in the morning. Being train-savvy I found myself a seat – one that said it was reserved from London and had no one in it – but there were plenty of people who had to stand, and if I hadn’t had years of experience of train travel before I started driving just four or five years ago, I would probably have been one of them.

Anyway, I got there, and very pretty it was too:

View across to the Brecon Beacons, Wales

The Brecon Beacons

And it was great to see my friends, who I’d not seen for about five or six years.

And then I came home again … eight hours it took me, door to door. If I do it again I shall certainly take Maggie up on the offer of staying a night with her both ways. By the time I got home I was about ready to cry. I thought I’d been rather clever in booking First Class, because the First Advance was only a few quid more than standard and I thought if I traveled home in the lap of luxury then I’d be less exhausted. Well … if I HAD traveled home in the lap of luxury I probably would have been less exhausted! The first part of the journey was great – no first class on the little valley line from my friend’s house to Cardiff, but that was OK – the train wasn’t busy, it was warm, and the guard was friendly. Then at Cardiff I found the First Class Lounge – a lovely lady in charge, providing free coffee, water etc. and a chat, and promissing to let me know when the train arrived on the platform, which she did. They also had a rather nice second-hand book stall in the lounge and I bought a book to keep me going for the next  two hours or so until London. Then onto the train – a lovely, comfy seat with loads of leg room and a charming stewardess who must have come past at least six times offering complimentary coffee, orange juice, water, cake, biscuits and possibly even sandwiches – she certainly had sarnies, but I’m not sure if they were free or not. The guy opposite me couldn’t believe his luck. Every time he saw her coming he asked for a coffee and an orange juice and bicuits or cake, and then he squirelled the biscuits about his person for future use! Anyway, that was a lovely journey, marred only by being one of the two ten-minute late trains. Then across the Tube, which was thankfully uneventful and over to Liverpool Street to get the train to Norwich.

And that’s where it all started to go wrong. The reason I expounded on the First Class advantages so much just now is so that you, dear reader, can compare them to the next ‘First Class’ leg of my journey. This was National Express Trains. Name ’em and shame ’em, I say! Due to ‘a shortage of rolling stock’ there was no catering on the train. There were also no toilets, no ticket collectors and no working heaters in the ‘First Class’ carriage. To add insult to injury the first class carriage wasn’t actually a carriage but just a few seats tacked on to the end of an ordinary carriage, and when I say a few that’s what I mean. It was absolutely full. I was lucky to get a seat in it at all, because the other thing it had none of was reservations. Although I’d reserved my seat, they hadn’t put the reservations in so instead of getting an ‘airline’ seat, which actually has plenty of legroom, I had to sit in a ‘foursome’ which didn’t really have enough leg room for four!

So instead of arriving home relaxed after a nice sleep, which was my original hope, I arrived at Norwich station frozen to the core, not having slept a wink and stiff as a board from lack of leg room!

Still, moaning aside, and traveling aside, it was a really good trip. I’m glad to say that on the one sunny day that we had I had virtually no RA symptoms and could enjoy the lovely views across the mountains. (I won’t dwell on the state I was in the previous day, when it rained for 24 hours non-stop, but that’s Wales for you!)

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