I don’t get it!

March 24, 2009 at 5:00 pm | Posted in rheumatoid arthritis (RA) | Leave a comment
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Well, I made my decision yesterday … eventually. I took the afternoon off. I continued to feel completely rotten, had to take Tiny Cat to the vet for an injection later in the afternoon (to get her a booster injection to try to put on weight – ironic really when Enormous Cat could easily spare some!), and felt rotten there. Had a rotten evening, went to bed feeling rotten and had a rotten night’s sleep … I’m sure you get the picture.

Well, I woke up this morning feeling absolutely fine, and I still feel fine at 4p.m. with almost no pain, and reasonably wide awake!

I wonder if it’s time to give up trying to second guess this benighted disease! Or maybe even if it didn’t feel yesterday as though ‘pacing myself’ was doing any good at all, it has really.

Still a-ducking and a-diving to avoid that flare!

March 23, 2009 at 2:19 pm | Posted in Me, rheumatoid arthritis (RA) | Leave a comment

Saturday morning I went shopping. It was fun, kind of … but I had to buy boots. I mean I really HAD to buy boots, as the ones I wear nearly every day to work have just about fallen apart. I went to my usual trusty cheap shoe shop … hopeless. I tried M&S, even more hopeless – after all what sane person is looking for boots in spring? I tried Clarkes. Phew, pricey!! Then I remembered the trusty cheap shoe-shop had another branch, and finally I tracked down what I was looking for. I was with mum (who drove, which was jolly nice of her … so my mother’s day treat to her was letting her drive me in to town, buy me coffee and watch me try shoes on … don’t think that’s how it’s supposed to be), and she wanted to look at clothes so we did that and both found something nice, and were both completely shattered! I spent the rest of the weekend recovering.

Saturday was beautiful and hubby and I spent the afternoon in the garden just enjoying the birdsong and the sunshine – lovely. But I was still exhausted on Sunday, and had a bit of a rubbish day really, mostly, with PMT thrown in for good measure.

Today (Monday) I feel really rotten and I’m wondering whether I should have ANOTHER afternoon off … unheard of luxury for me to have two in the space of two weeks. Well, it worked before … I’m still not really flaring, although I feel pretty shity, so I think it did avert a flare before.  So the answer is that all logic points to the fact that I should go home. But I feel bad about telling the girl that works for me that I’m off AGAIN – how dumb is that? She won’t mind, she’s very understanding, we’re not that busy … but it still makes me feel so guilty. I’m supposed to the boss!

Maybe it’s just the possibly iminant period that’s making me feel this rotten.  I say possibly imminent because mine are COMPLETLY unpredictable and I may or may not be going through early pre-monopausal stuff. (Sorry if that was too much information!)

Did I Avert a Flare by a Hair?

March 17, 2009 at 12:28 pm | Posted in rheumatoid arthritis (RA) | Leave a comment
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Well after my last ‘but feeling OK’ post, I came a-crashing down last Thursday. Just felt awful, dead tired, in lots of pain, the whole shebang. So instead of my usual ‘I’m busy, I must push through this’ approach, I said to myself, ‘you’re the boss Penguin, GO TO BED!’ That IS supposed to be the advantage of being the boss, after all, although usually it doesn’t seem to work out that way.

Anyway, I did that. I got a total of eleven hours’ sleep that afternoon and night, after having had three nights with less than five hours, and while I can’t say I felt like a new penguin on Friday, I felt a heck of a lot better than I had, and I ended up having a very enjoyable and active weekend.

So – I guess this suggests that the OT is right about the vicious spiral and all that, and that I broke the circle/spiral by stooping and resting. Then again … maybe it’s just coincidence. That’s the trouble with RA – it’s so hard to tell!

Oh well – I feel better; that’s what matters!

Stress, stress and more stress … but feeling OK!

March 11, 2009 at 9:24 pm | Posted in Me, rheumatoid arthritis (RA) | 3 Comments
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So, are my flare-ups related to stress, or not? I thought they were but I hope they aren’t, because if they are I’m in for a big one any time now!

Yesterday I had my first ever row (maybe too strong a word, but very strong disagreement) with a client, on the phone. I was, to say the least, short with them. I was convinced I was standing firmly on the moral high ground as they’d made a bit of a mess of things, and I told them so… only to realise mid-conversation that I’d also made a mistake. While theirs was more serious, it caused an earthquake in my moral high-ground leading to rather a landslide.

It took the rest of the day to try to repair some of that, and to TRY to stop constantly worrying about it, while also trying to get on with some work.

It was all put into perspective somewhat when I got home to find that one of my friends had lost his job, another’s cat had died and a third’s husband had had a stroke!

All in all not one of my best days. I ended it by telling myself firmly that tomorrow WOULD be a better day, and it has been. (Not that that would have been hard!)

As for the RA, I had practically no problems yesterday and although I was pretty stiff on getting up this morning, it didn’t last too long. My neck and shoulders are stiffening up again now, and slightly achy, but that may just be because it’s been over two weeks since I had physio, as my physio isn’t well and had to cancel the last appointment. Employing positive mental attitude to assume that’s what it is, and not the start of a stress-related flare!

A picture of Enormous Cat and Tiny Cat

March 9, 2009 at 10:15 pm | Posted in Me | 4 Comments
Enormous cat

Enormous cat

Well here he is. And btw, we don’t overfeed him, he overfeeds himself … and the neighbours don’t help. He just looks at them with big wide eyes and they’re totally convinced he’s starving.

Tiny Cat

Tiny Cat

This is Tiny Cat. You can see she’s smaller, although you’d need to see them side by side to get a feel for their size difference. Tiny cat says, ‘Fat chance!’ She prefers to remain aloof.

Middle-size cat is adorable but really not photogenic!

New NICE guidelines on RA

March 9, 2009 at 9:56 pm | Posted in Me, rheumatoid arthritis (RA) | Leave a comment
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Well it seems that NICE (the ironically named and aforementioned National Institute for Clinical Excellence in the UK) have done an about face on their original ‘if you try one anti-TNF and it doesn’t work, tough. You can’t have another one, ner ner ne ner ner’. They’ve released new guidelines which are actually very positive. Of course it doesn’t mean that all rheumatology departments will agree with or follow their guidelines but I suppose it’s a start. Here are some of the positives (IMO), and it’s only a very select few that resonated with me:

  • Newly diagnosed people should be offered a combination DMARD therapy straight away, including methotrexate, ideally within three months of persistent symptoms. Well I don’t think I know ANYONE in the UK that was diagnosed within three months of persistent symptoms, let alone given the combination therapy option, but I’m glad if that’s going to change.
  • A level of what is acceptable disease control should be agreed with the patient in advance and worked towards. HA! I’ll believe that when I see it. The nearest we come to discussing acceptable levels is ‘Really you’re not too bad. I see much worse people in here every day.’ Well yeah, and there are people much worse off than me in Africa, and indeed round the corner, but that doesn’t mean I have to be content with my lot!
  • Quoting direct from the NRAS site (www.rheumatoid.org.uk) “People with RA should have access to a multidisciplinary team (MDT); this should provide the opportunity for periodic assessments of the effect of the disease on their lives ( such as pain, fatigue, everyday activities, mobility, ability to work or take part in social or leisure activities, quality of life, mood, impact on sexual relationships) and access to a named member of the MDT (for example, the specialist nurse) who is responsible for coordinating their care.” Well yeah, I have access to a multidisciplinary team. Like any team, some are fabulous (physio that I see now, occupational therapist, even if we don’t share a sense of humour, rheumatology nurse at the GP surgery), and some aren’t. One that isn’t is the one who would no doubt be ‘coordinating my care’, gawd help me, if that happened; the RA Nurse Practitioner at the hospital. I can imagine quite vividly what her assessment would be like. She would read off a form in a board voice, ‘Are you depressed? No? Good. Do you have sex? No? Good.’ And of course what’s required is that thing they don’t have time for at hospital, a CONVERSATION!

And don’t get me started on the patient guidelines – well, if you know me you know I will no doubt get started on the patient guidelines when I have time and feel up to it, but just for now I’ll say they’re absolutely appalling, patronising, insulting …you get the idea. I asked Arthritis Care for a copy.  They were wonderfully efficient and friendly and sent me a copy return post, but having received them I took one look and went straight to the NICE website to find the health care professionals’ version – THAT actually told me things. I am sorry I caused paper and Arthritis Care money to be wasted. The patient guide had lots of nice white space and simple bullet points that told me that as a patient I should definitely have the right to treatment, possibly with drugs.  (OK, I exaggerate, but thin doesn’t even begin to describe the level of information!)

Here’s a a link to the patient guidelines if you want a laugh or cry. And here’s a link to the healthcare professional guidelines if you actually want some information.

I’m probably being a bit harsh, but it surely can’t be that hard to have something really, really simple with links or (see page whatever) if you want further detail, instead of assuming all patients are clueless. It’s as bad as the hospital rheumy nurse giving me the very useful methotrexate book and saying, ‘but really there’s more information here than you need’. I think I should be allowed to decide that.

Yay! I’m having Monday off!

March 6, 2009 at 1:57 pm | Posted in rheumatoid arthritis (RA) | Leave a comment
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I’ve had a really, really lousy week. Work’s been completely bonkers, I haven’t slept well and I’ve been stressed out of my mind. Funnily enough the RA side of things has been pretty good (not fantastic, but better than for a while!) I’ve noticed in the past that when I get tired and stressed the RA seems to get worse, but now I wonder if I had my cause and effect muddled – the RA was worse, which made me feel tired and stressed.

This time I know it’s work that’s done it, not illness.

I’m having Monday off, that’s THREE WHOLE DAYS OFF IN A ROW! Last time I did that was Christmas, I shall return to work on Tuesday a new Penguin – full of beans and the joys of spring. (OK, so we had hard frost this morning and they’re threatening snow, but hey, the bulbs are string to poke up above the ground, the sun is shining, the crocuses are flowering and tiny cat is starting to go out again – it must be spring.)

Of course the relaxing didn’t last long …

March 3, 2009 at 8:32 pm | Posted in rheumatoid arthritis (RA) | Leave a comment
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Having had a wonderful relaxing day on Saturday, I felt full of beans on Sunday and did lots of sorting out and tidying, as well as a thrilling trip (this is sarcasm, for those of you who might doubt it) to the DIY store. Of course I was pretty shattered by Sunday night and no longer feeling the benefits of Saturday. DOH! I really should know better by now.

At least enormous cat and middle-size cat did their best to make me relax in the evening. I was trying to do some embroidery and it involved wielding a huge embroidery frame – the two of them made sure that was quite impossible as enormous cat sat on my lap and middle-size sat on my chest. Tiny cat remained aloof, but I think she was laughing.

The cats certainly do seem to often know when I’m really not well and make a point of coming and snuggling up, but I think this time it was just a case of enormous fancying a lap and middle-size getting jealous!

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