February 28, 2009 at 11:54 pm | Posted in rheumatoid arthritis (RA) | 1 Comment
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Well, it’s been a hell of a week, but thank goodness after a three week break (due to my own stupidity in missing an appointment followed by half-term), I’m having physio again, which improved the end of the week no end. On top of milk RA stuff, the week before last I had a migraine every day – I have stuff I can take that actually works, but you can only take one tablet every 24 hours and it tended to recur about every 18-20 hours, so not perfect. I’ve been working like a dawg and sleeping badly too.

Mysteriously, although the doc reckons my migraines have nothing to do with neck trouble, after the physio they melted away … just like they did when I started physio last time … seems like more than a coincidence to me!

But today I just RELAXED. Apart from a brief trip out with my mum (and she drove … I even fell asleep in the car on the way home!) I did nothing but I lie about in various different places, read books, stroke the cats, watch telly … and a teency bit of embroidery.

Of course I feel guilty as hell!! No one’s making me feel guilty – hubby’s telling me how sensible I’m being, even … but I’m no good at this not doing anything lark, although I reckon now and then it’s probably very good for me.

Off to bed to curl up with hubby, a cuddly penguin called Rory (don’t ask, just don’t ask) and my life-saving iPod. (Poor ol’ cats have been banned to the downstairs rooms, although Enormous Cat might plop through the bedroom window later on and wake me up, as he has a habit of doing.)


“I’m Just a Girl Who Can’t Say No”

February 20, 2009 at 1:43 pm | Posted in Me, rheumatoid arthritis (RA) | 5 Comments
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Fortunately or unfortunately, I’m not quite sure which, this is not in the context of the song from Oklahoma that the quote is from. The thing I can’t seem to say no to is work!

I need to relax. I need to de-stress. I need to work less hours. I need to ‘respect my disease’ – god, that’s an awful expression, but if you’ve got RA or know someone who has then you’ll know what I mean.

So why is that when some guy rang out of the blue yesterday and asked if I could do a 9,000 letter mail merge and print run (which is BIG and not my ‘specialist subject’ either) I found myself saying ‘Yes’? He’s coming in this afternoon and I’m going into the meeting with the ridiculous attitude of ‘actually I hope he decides not to use me’. This is DUMB!

The problem with working for yourself in the kind of work I do is that you tend to always say yes when people ask for a quote, because you might be madly busy one week (or month) and dead quiet the next. I used to work from home on my own, but now I have an office and an employee I have overheads to cover (although in fairness my employee more than covers her bit of overheads!) so it’s extra stress again.

I’m wondering whether to give up the office and go back home, but clients do like a snazzy office address rather than a ‘9 Acacia Avenue’ type obviously home address! And they like, once in a while, to be able to come into the office, which I wouldn’t do if I was at home.

Then again, I’ve got this guy coming in and I don’t really want him (so to speak) so maybe that’s a plus in the home office thing.

Oh no, decisions, decisions … more stress. Wibble.

Anyone seen my marbles – I seem to have mislaid them.

“RA: The loser disease” – and the one book that’s the exception that proves the rule

February 19, 2009 at 9:58 pm | Posted in rheumatoid arthritis (RA) | Leave a comment
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I wish I’d seen this post by Sara (The Single Gal’s Guide to Rheumatoid Arthritis) when I first contracted this dratted disease – it sums up all my frustrations about people’s lack of understanding about what RA involved and is well worth a read. Mind you, one of her laments is a lack of good books telling you “what to eat for it, how to exercise for it, treat it and survive it. How to laugh about it, talk about it with your partner, your kids, your doctor, your boss, neighbor and that random person you bump into on the street.” I have actually come across one such book – although the section on telling you how to talk about it with the random person you bump into in the street is quite short, it actually IS there! It’s called Living with Rheumatoid Arthritis and it’s a John Hopkins Press Health book. Of course I just went to look for it, to give it a bit of a rave review, and I can’t find it. Typical!! A friend (one of the ones who DOES understand) bought it for me when I was first diagnosed, and it was an absolute lifesaver. It’s certainly not light bed-time reading, going into rather dry detail about the science behind RA, the current treatments etc. but I really found it very, very useful.

Insomnia – what I do to combat it (although it doesn’t necessarily work!)

February 18, 2009 at 9:39 pm | Posted in rheumatoid arthritis (RA) | Leave a comment

I just read a really funny post by Michelle at Life in the Autoimmune Lane, about the housework-inducing effects of insomnia. I started to add a comment and realised it was too long for a comment so I’m posting instead.

No way!!!

Hey, I got RA and I get insomnia but it never, never, NEVER induces me to do housework – what a totally alien concept. Mind you, my choices of things to do ain’t so healthy either:

1) go downstairs (quietly so as not to wake up hubby) and have a cup of coffee (yeah, I know, I know … )

2) Lie in bed and worry about how much work I’ve got to do (when I’m busy) or how quiet work is (when I’m not)

3) Snuggle up in bed with Dr. Stuart Lee from Oxford University a.k.a. (before hubby gets jealous) listen to podcasts on my ipod – which I’ve already posted about.

4) Listen to music on the iPod but NOT sing out loud to it, which is a real challenge. (Although I don’t know why I don’t just sing out loud as it would take an earthquake to wake hubby … in fact he slept through the only one we’ve had).

Actually that’s not entirely fair. He’s got very sensitive to me having a bad night recently. If he hears me pottering about he rouses himself enough to go, ‘Y’a’right Penguin?’ in a bleary voice. By the time I’ve said, ‘No,’ he’s asleep again though. Means well though.

5) Move enormous cat off whichever bit is aching, because that’s probably why it’s aching, and try to get back to sleep.

6) Try to work out what I need to do for the bit of embroidery I’m currently working on. This actually works IF I’m not too full of coffee, too covered in cat, too hyped up by music or too wound up about work. Many people would say that that’s because embroidery is a naturally sleep-inducing subject, although I’d have to disagree there!

OOPS!!! Missed a physio appointment

February 12, 2009 at 9:55 am | Posted in rheumatoid arthritis (RA) | Leave a comment
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Well I’m feeling a right idiot at the moment! I have had a physio appointment on a Wednesday afternoon (or very occasionally a Wednesday morning) since just after Christmas. Last week my physio said, ‘I’m not in on Wednesday next week, but I’ve got one on Tuesday morning if that’s OK?’ It was fine, so we booked it on.

I’m sure you can see what’s coming … I didn’t put it on the calendar, and quite late on Tuesday afternoon I thought to myself, ‘Hmm, wonder what time that physio appontment is tomorrow?’

OOOPS! By the time I phoned to apologise they’d all gone home for the day, but I hope she got the message. Perhaps she’ll have forgotten by the time I see her again, as she’s not in next week anyway!! So I’ll have gone THREE WEEKS without physio by the time I see her again.

Still – things seem relatively good at the moment, so I’ll just have to keep using the TENS machine and hope things stay stable until I see her again …

TENS machine – works for me!

February 7, 2009 at 10:34 pm | Posted in rheumatoid arthritis (RA) | 4 Comments
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My physio suggested recently that I try a TENS machine – and handily enough I’d sort of inherited one and had it sitting in a cupboard at home, but hadn’t thought to use it for ages. TENS is transcutanious electronic nerve stimulation, delivering very mild electronic stimulae through the skin. It works, to put it simply because I don’t actually understand the non-simple explanations, by blocking the pain receptors somehow, so presumably the brain doesn’t know you’re hurting. Like aspirin, it’s blocking the pain but not curing it. However, unlike aspirin it’s actually causing the body (somehow – something else I don’t understand) to create endorphins, which are the body’s natural pain relievers (among other things). Apparently, according to some, several sessions can relieve chronic pain altogether … according to other studies (which I’m not referencing because I’m tired and I’ve had a long day, but if anyone asks I’ll find ’em!) it doesn’t work at all. I suppose it depends on the individual – from my point of view, what matters right now is that it works for me, and it’s working right now!

I’ve used it both on my shoulders/neck and my elbows, and I have seen an improvement over the last couple of weeks in both. Mind you, since my flare there’s been a general improvement anyway, and of course I’m also having neck manipulation and ultrasound through physio, but I DO notice almost immediate relief when I start using the TENS now, so I reckon something’s going on, and it’s a good something.

It’s important to remember, as a scientist, that it’s blocking the pain but NOT relieving the underlying condition i.e. it’s not doing anything to stop my immune system from attacking itself. Important to remember as a scientist – perhaps important to try and forget as a patient!

Alternative Medicine – v – Conventional Medicine

February 3, 2009 at 11:28 pm | Posted in rheumatoid arthritis (RA) | Leave a comment
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A lot of alternative medicine is good. It’s ‘alternative’ because it’s not been proven scientifically in double-blind trials, but that doesn’t mean it doesn’t work. It might just mean that no one has enough interest in funding the trials or, more to the point, sees enough profit in doing so. Full scientific investigation complete with clinical trials is an extremely expensive business.

However, a lot of conventional medicine is also good, and that’s something that a lot of alternative medicine aficionados tend to forget … and in fairness vice versa is certainly also true.

The biggest pity, to my mind, is the divide that says the one has to be ‘versus’ the other. Most consultants dismiss any alternative therapies out of hand, and most alternative therapists, in my experience, are pretty keen to dismiss conventional medicine. There are moves to get the two working together, but it’s going to be a long hard slog to get the two practices talking to each other, an then keep them at it, I think.

Something to remember with regard to RA though is that forty or so years ago conventional medicine had no effective treatment. The recommended course of treatment was bed rest, which did precisely nothing to help. Even twenty or thirty years ago, you’d be put on high doses of aspirin and not a lot else. As a rule the patient went from bad to worse, as RA is generally, if left uncontrolled, a progressive disease. In the short time from then to now there are many more or less effective treatments on the market, a large number of RA sufferers have their disease halted in its tracks, and some are even in remission. The medicines might not work for ever, but, for many people, they do work. They might also cause nasty side effects, but it’s important to remember that they might NOT. Reading the list of side effects on a packet of tablets is pretty scary – what it tends not to say is, ‘Only one percent of people get this one’ or ‘only ten percent of people get that one’ and a lot of people assume that if they try the medication they’ll get ’em all.

Now anti-TNFs have come on to the market too, and the possibilities of treatment, if the costs can be brought under control, look relatively rosy. So, while I’m all for living a healthier lifestyle (if not very good at it myself, she says munching on another chocolate), and it might well have huge benefits for your RA (or rather huge benefits for getting rid of your RA), don’t disregard conventional medicine out of hand!

And finally, conventional medicine doesn’t claim to understand RA fully, know everything about it, or know how to cure it: I think anyone who does make those claims is highly suspect.

(And if you think this is controversial, just wait for the post I haven’t written yet about drug companies and how they’re actually not all a hundred percent evil)

Thank goodness for my iPOD (Yes, this is an RA-related post!)

February 1, 2009 at 9:37 am | Posted in rheumatoid arthritis (RA) | 4 Comments
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I got an iPOD for Christmas. The main reason I wanted it, sad to say, was so that when I felt really crappy and just had to lie down, hands too sore to even hold a book to read, I could lie back and listen to it and it would take my mind off things. Come Christmas I really thought I wouldn’t be needing it for that, as things had been going so well on the methotrexate, and was hoping I’d be using it instead to make long train journeys less boring … I desperately want to visit a friend in Wales, but haven’t been up to it yet. (She’s only been there three years now!)

Anyway, since Christmas I’ve had several bad nights and one full-scale flare-up so just being able to plug myself in and lie back and listen to music has been a real boon. But last night things got even better, iPod wise … and here’s the point where I read this back to myself and think, ‘Pollyanna Penguin, you need to get out more!’ … I discovered iTunes-U. This is a bunch of free downloads from the iTunes site, from various universities, including some seriously good ones like Warwick, Cambridge and MIT. I think these are ‘open source’ type things that various unis have made available on their own sites, but they’re handily collected together at iTunes-U. Last night I downloaded a fabulous lecture on the History of Cambridge by the great David Starkey (renowned Cambridge historian, author and of course, in this day and age, TV presenter …), and lecture on early social history in America from Warwick (lecturer kind of rubbed me up the wrong way with his jokes, but it was still very interesting stuff and I’ll be downloading the rest of them from him today).

It also helps, if money’s tight, to be into fairly obscure music, because obscure music is CHEAP. Having attended an all day lecture on Baroque Music in The Court of Versailles (Louis 14) yesterday (see, I do get out, I just have odd tastes) I came back all re-fired up about Baroque music (which I did quite a lot of in school, but not so much since) and thought I’d see what was available by some of the composers we’d listened to, on iTunes. One of my favourites from the snippets the lecturer played was the slightly weird and rarified by very lovely Troisième Leçon de Ténèbres by Francois Couperin – a meer snip at £2.99 on iTunes. Far cheaper than being in to the latest pop music!

Since I was awake for several hours last night feeling really rotten, I actually listened to all that lot and more, and it really did help to keep my mind off the pain and keep me sane!

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