Tips on coping with RA

April 10, 2011 at 8:29 am | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, rheumatoid arthritis (RA) | 3 Comments
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Someone just posted a request on tips for coping with RA on the NRAS Healthunlocked site that I mentioned previously, so I thought I’d ‘cross-post’ mine here, although I’ll add to them a bit because I didn’t want to hog the post on that site!

Not saying all these will work for everyone, it’s just what works for me!

  • Make sure you take all your tabs and don’t be afraid to use pain relief too! You’re not proving anything by struggling through without paracetamol (or whatever). I also have a wax bath for my hands when I need it, a TENS machine and a front-fastening neck brace. Hardly ever have to use any of them but they’re there if I need them! (So long as I remember I have them!)
  • PACE YOURSELF. It’s not good saying, ‘I’m just going to battle through with my usual routine’ because that’ll just make things worse. On the other hand, to stay positive I definitely don’t get into the thought pattern of ‘I mustn’t plan anything in advance, because RA might get in the way.’ Yes, it might, and it often does, but you still have to make plans and have things to look forward to.
  • ACCEPT HELP! – but at the same time make sure to stay independent as much as you can. So for instance I make sure I get referrals to physio when I need them and go and nag the doc if I need to. And make sure I don’t turn away offers of help from good friends and colleagues. But at the same time I won’t just sit about and let people run around after me when I feel fine – tempting though it might be sometimes!
  • TREAT YOUR FRIENDS RIGHT: I don’t think you can’t spend all the time moaning to your friends or they start thinking, ‘Where’s the Penguin I used to know? I don’t like this one!’ On the other hand, a REAL friend will at least listen when things are really bad, offer to help and MEAN it! If they don’t do that, then perhaps they’re not real friends anyway! They expect the same thing in return of course. If they don’t it then you’re not a real friend either!
  • In my case I’m extremely lucky to have a wonderful hubby who, bizarrely, enjoys housework, so that’s one big burden taken away from me! I’d recommend a house-work loving partner to anyone with RA but I guess they’re pretty rare!
  • SLEEP! Really make sure that you get enough sleep if you possibly can, and if you need to then try a herbal or a prescription sleeping thing, because getting enough sleep makes everything else better!
  • I strongly suspect that one could help oneself by being tidy and having a place for everything and everything in its place. This would negate the need to try to kneel down and search under the bed with bad knees, and then find whatever it is isn’t there anyway … However, as I’m the messiest person I know and was doing just that scrabbling under the bed thing only yesterday, I can’t put that in as a personal recommendation really!

Migraines again!

January 18, 2011 at 3:03 pm | Posted in Me, rheumatoid arthritis (RA) | 8 Comments
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Hmm, not feeling quite so fine any more! I had to finish work early yesterday because I woke up with a headache and it just got worse and worse until I finally realised it was a migraine. My migraines usually start with handy visual effects that flag up, ‘Hello! I’m a migraine’ straight away, but of course I was probably asleep at the point where those were happening, so I missed that.) Although it was one sided, it wasn’t that bad when I woke up so I just took paracetamol. It just niggled away all morning, and eventually I thought ‘migraine?’ and took a migraine tablet. by then I suppose it was waaaaaaaaaay too late.

At about three o’clock it was getting really bad – feeling sick, couldn’t see properly out of my right eye, bad pain … definitely time to give up and go home. Fortunately hubby had the day off and was there to get me tucked up in bed with an ice pack, a darkened room and middle-sized cat (who purred so loudly at the unexpected pleasure of an afternoon snuggle that I was very glad my migraines aren’t affected much by noise – only light!)

I felt slightly better by about six and was able to eat some dinner, which made me feel better still, but still completely washed out. I didn’t do anything all evening except watch a bit of telly once the headache had gone.

Still, at least woke up this morning headache free. Just one small problem … they’re painting at work! Aaaaargh – the smell of paint is bringing the headache right back again! Not sure how long I’m going to last this time.

Interestingly I’ve got pains in my right shoulder for the first time in a while, coinciding with a migraine over my right eye. I’m fairly convinced they’re related … but the doctors aren’t!

If there’s anybody out there that gets migraines that they think are related to their RA Pain, I’d love to hear from you!

A morning of minor frustrations

January 12, 2011 at 9:47 am | Posted in Me | Leave a comment
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Is it too late to make another New Year’s Resolution? So far the first and only two aren’t going so well … eat less, exercise more. I’ve managed one exercise ‘session’ and then come down with a very painful period … which is usually an excuse to eat more, exercise less!

Anyway, the new one is to try not to let a day full of minor frustrations build up into one major bad mood!! This morning will be testing. It’s not nine o’clock yet and so far:

  • I woke up at 5:50 am with a very painful back (period) and hip (who knows, maybe RA?), to hear the pitterpatter of not so gentle rain on the roof. Oh goody, another wet and painful day!
  • I checked my emails to find I’d managed to slightly upset a client. (Long story I’m not going to go into here, but let’s just say I’d anticipated that, and of course it’s his fault, but still not nice to have it confirmed.)
  • I went into the kitchen to make my lunch and found that Middle Sized Cat had spilt his water all over the floor. Needless to say, I found out by stepping in it.
  • I chopped up a variety of bits and bobs for my salad, and then threw them on to the floor and into Middle Sized Cat’s refilled water bowl!
  • I was running a bit late coming into work and then had a minor run-in with an idiot driver who thought that he had the right to pull out round a stationery bus into my side of the road because he drove a BMW and I only drive a Corsa. Wrong! Genevieve (my car) and I don’t like to be bullied, so we carried on. He wasn’t actually drawn up with the bus yet and had heaps of room to pull over on his side, but he sat there for a minute, pulled right out onto my side of the road and glowering because he thought I should have waited for him. HA! Anyway, we won that one at least, but it didn’t make me feel any better – just cross about more things!

So here I am, sitting at my desk, telling myself that none of these things are exactly a major crisis – especially as both hip and back ache have now gone – and that I should pull myself together and plan for a GOOD DAY.

Erm … so far it’s not working. Part of me is going, ‘Come on Penguin, positive thinking and all that … smile and the world smiles with you and all that jazz.’ The other part’s going, ‘Oh shut up you stupid old bat. I’m entitled to the odd bad mood if I want one!’ Have to wait and see which part wins!

Actually, seeing them all written down on the page helps rather to see just how trivial each individual incident is; the trick is just not to let the frustration build up. I feel better already!

Throwing thyroid into the mix

June 15, 2010 at 9:10 pm | Posted in Me, rheumatoid arthritis (RA) | 5 Comments
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I went for monthly MTX blood tests today and remembered to ask if the thyroid results were normal – I’d assumed they were, since no one at the surgery had bothered to contact me. They weren’t.

Having said that, they weren’t all that abnormal either, so what are we doing about it? In their case nothing as yet, in my case getting rather confused …and cold …and tired … and achy … but mostly just confused. Until I went in and asked for the results I thought a thyroid test was just that, one test, one answer – OK, not OK, whatever. But no … it turns out there’s a test for thyroid stimulating hormone (TSH) which is produced by the pituitary gland and stimulates thyroxine production from the thyroid gland. Then there’s tests for the two types of hormone the thyroid gland itself produces, thyroxine (T4) and the other one whose name I can’t remember (T3). Counter-intuitively, if you have lots of TSH sloshing about it means your thyroid might be UNDER-active, because you have to produce a lot of TSH to get the thyroid to do anything at all. If you have loads of T3 and/or T4 (produced by the thyroid gland itself) then you obviously have an overactive thyroid as the thyroid is producing loads of the stuff. If you have very little then clearly you have an under-active thyroid.

Symptoms of the latter include feeling cold when it isn’t (box ticked), weight gain or difficulty in losing weight (box ticked), muscle aches (box ticked), abnormal menstrual cycles (oh yeaaaah!), decreased libido (what’s libido again, somebody?), irritability (well … erm … guilty) and memory loss (not sure, can’t remember). However, my levels of T-whatever – not sure if they tested for T3, T4 or both, are in the normal range. My level of TSH though is just outside the normal range – just a smidge too high. As a consequence the docs have decided to wait and see. I can totally understand the logic of this – apparently it does fluctuate and it’s not as if it’s wildly off the scale, so try again in another month and see if it’s still high, and if the levels of T-whatsit have decreased or not.

Really – I can totally understand that – but it’s just sooooo frustrating, as I sit here grumpily shivering, with period pains! (Oh yeah, and a flare just to increase the fun.)

One interesting thing – apparently the most common cause of hypothyroidism (under-active thyroid) is an autoimmune problem. Surprise, surprise!

As to the confusion – I’ve just about got it straight in my head that there are all these tests and roughly what they’re for, but nowhere can I find clear guidance as to what is and isn’t normal range for any of these tests – it seems that for TSH it used to be considered that up to 5.5 was OK, now they reckon about 4.5, or maybe 3.5, or sometimes 2 depending on who you ask, and apparently some authorities in the UK reckon up to 10 is fine! I’m just going to go off and find a nice sandpit to bury my head in for the next month.

Ten GOOD things to do during a flare … if you’re me

June 10, 2010 at 5:24 pm | Posted in rheumatoid arthritis (RA) | Leave a comment
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In the spirit of this blog being positive, here’s the antithesis to the post below. Ten good things to do during a flare – but of course it only applies if you’re me, ’cause everyone’s flares are different!!

1. Take it easy.
2. Take time off work.
3. Really – take time OFF work.
4. Listen to your own excellent advice about taking time off work.
5. THINK – try to be slightly more aware of hands and feet BEFORE you do dumb things!
6. Keep as active as possible – but don’t force yourself.
7. Do everything you can to get to sleep and stay that way at night! E.g. Take 5HTP, take paracetamol just before going to sleep even if you’re not sure you need them, listen to Bill Bryson reading one of his books in his gentle, soporific voice (or Tim Piggot-Smith reading David Starkey, or anything by Stile Antico)
8. Eat sensibly and TRY not to comfort eat!
9. Learn to count.

This flare I have managed to take note of 1-4 and 6-7 this time, and I am feeling A LOT better. I’ll try harder next time and see if I can manage all ten … well nine … well eight really …

I give up!!

June 8, 2010 at 12:58 pm | Posted in rheumatoid arthritis (RA) | 2 Comments
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I think that now is the time to admit defeat … talking of which my feet are admitting defeat too, but I’ll come back to that in a minute!

Ever since I was diagnosed with this dratted thing I’ve been trying to see if my RA followed some sort of pattern – diet, stress, tiredness, weather, hormones … and every time I try to keep some sort of log and think I’m getting somewhere, the pattern just falls apart after a while. I think I give up on trying to find out exactly what it is that makes my RA worse – not because I don’t think the patterns are there, but because I think they’re just too complex. I suspect that tiredness AND weather AND stress AND hormones AND diet probably all play a part – but my analytical abilities (or record-keeping abilities for that matter) just don’t stretch to trying to work it all out … especially when I’m feeling ‘carp’ anyway!

It would be really interesting to keep a log of all the different factors every day and try to analyse it – anyone up for the challenge, ’cause I’m not!

On the bright side, I have an outfit (minus shoes of course!) for the wedding of Mr and Mrs Mooseface (aka my brother and his fiancée). This is why my feet have admitted defeat – not that I’m going to give up on shoes (don’t panic Mr and Mrs M, I’m not coming barefoot although that has been suggested!) Just that my friend Debbie and I had a NINE HOUR shopping trip on Saturday (including the drive to Norwich and back, which Debbie did thank gawd!) and my feet have given up as well since then!

We had a terrific time, and a successful outfit hunt, but as my dress has black in it I thought ‘Aha, I probably have some shoes at home that’ll do the job!’ Well y’all know how much I love shoe shopping (not), so I thought that seemed like a cunning plan. Got home, tried on the outfit, showed Hubby (who liked it, thank gawd!) and tried on the shoes. These are pretty un-fancy black sort of court-shoe/pump things that I’ve had for years, with a harmless-seeming one-inch heel. I thought perhaps a shoe-bow in one of the other colours in my dress, or in silver to match the shrug I got to go with it, would smarten them up.

Well – the shoe trying on session was NOT a success. I have one thing to say about it. OOOOOOOOUUUUUUUUCH!!! Actually the heel on them was really ugly, so perhaps it’s for the best! Anyway, looks like it’s flats for me! (OK, that was more than word … I don’t care! I ache! Stop getting at me! Waaaaah!)

So … will have to have a shoe shopping day some time in the near future! Probably not this weekend as am hoping to fit in another hike with Weeny, hunting butterflies and orchids to photograph … at least the feet will be in walking boots for that so I can probably cope, if the weather improves. It’s continuous rain at the moment.

So much to post about, so little time

May 13, 2010 at 1:09 pm | Posted in rheumatoid arthritis (RA) | 6 Comments
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It’s been ages since I posted! First of all I was on holiday (fab) and then I was back (less fab) with intrays (both virtual and paper) bulging at the seems, even though ‘the boss’ was doing a sterling job of dealing with stuff while I was away. My stress levels weren’t helped by the tax office sending out wrong info about maternity pay just when I needed to look into it, as ‘the boss’ is nearly half way to having a baby! Their calculator told me I could claim back about 10% of what I paid out in statutory maternity pay – which worried me a bit, since I’d thought I could claim back 100%. Turns out I CAN claim back 100% – but I had a stressful week or two before I found that out. Then they decided to keep me on my toes by telling me I’d not paid April’s PAYE, so I had to waste time phoning them up, only to be told ‘Oh sorry – the computer is accidentally sending out non-payment notices every time someone sends in an end of year tax statement.’ Marvellous!! Work itself has been pretty stressful too – but at least busy, which as usual I have to keep reminding myself is GOOD THING!

On top of all this I’ve recently heard that a good, and local, friend of mine has just been diagnosed with breast cancer. She also has RA! As my friend Weeny would say, ‘You really must stop going for those buy one, get one free offers!’ Seriously though – you’d think RA would be enough to cope with!

As to the good ol’ RA, it’s MOSTLY been behaving itself. I thought I was in for a holiday flare as I watched my hands getting redder and redder and more and more swollen as hubby drove us down to Dorset, but a few hours after we had reached our friend’s house, where we were to stay the week, they’d settled right back down. Perhaps my body suddenly went ‘Hey, chill out penguin – you’re on holiday!’ Had a blipette (florette, flarette?) this week, probably due to finding out about my friend’s cancer, but again it hasn’t materialised into a flare, thank goodness.

I’ve also just had a thyroid test (again) because I’m feeling tired and FROZEN all the time. While this MIGHT have something to do with the fact it’s bloody cold and we’re getting early April weather in mid May, I’m frozen even when it’s quite warm, so I think there’s more to it than that. The only time I’m really warm, in fact, is when I’m having a hot flush. Imagine the fun of dressing for a day of being 90% frozen and 10% boiled – it’s kinda tricky!

I think there’s about six things that could be expanded on in separate posts here, not to mention an interesting bit of info about blood tests that Maggie sent me before I went away and that I’m still planning to blog on at some point. But meanwhile it’s nose back to the grindstone – a rather grim mixture of interviews on child abuse and prostitution, and a disciplinary hearing! Oh well – it can’t be chocolate every week – last week was mostly all about chocolate, so I suppose I shouldn’t complain!

Weddings and wearables

April 15, 2010 at 12:57 pm | Posted in rheumatoid arthritis (RA) | 15 Comments
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I have a wedding to go to in August – I’ve mentioned this once or twice before! – but what am I going to wear when I can’t wear ‘nice’ shoes?

I get the feeling (probably erroneous) from my mum that she and other family members  have been discussing how to make sure Polly doesn’t look too awful for the wedding. <Sigh> Shoe-wise I really can’t wear the ugly contraptions that are my everyday-wear, but I want something deep and wide enough to fit my orthotics, closed-toed so I don’t feel self-concious about the RA side of things and that doesn’t look like this:

Dr. Scholl's - Men's Michael Air-Pillo Gel Velcro Shoes, Wide WidthI’m sure you can see why!

Thanks to my ‘interesting’ body shape it’s a sod to find trousers that fit properly so the obvious trouser-suit option probably isn’t a serious option … although I suppose I could alter it … and anyway, it’s going to be summer, so those kind of shoes are going to look wrong with ANYTHING! And I don’t want to look like this:

(With apologies to LimeGreenSquid for nicking his picture. If you object, let me know and I’ll take it down but it’s just soooo perfect!)

Since methotrexate’s magic weight-loss effect seems to have lasted a mere two weeks, I suspect I won’t be losing a few stone before then and presenting a sylph-like figure either, so all in all I’m a bit fed-up. There’s no pleasure in clothes shopping when you look and feel like this and I’ve never in my life had pleasure from shoe shopping – so while I’m really looking forward to the wedding, the preamble is worrying me slightly.

Pumps or flat Mary-Janes won’t fit the orthotics, but at least they’d be flat. Maybe that’s the way to go and a day without orthotics might not hurt toooo much. (I can see the steam coming out of hubby’s ears when he reads this, but sometimes a gal’s gotta do what a gal’s gotta do!)

Whatever I end up with it has to be flat. I don’t fancy spending the week after the wedding in self-induced vanity-related agony!

Bright ideas anyone?

I’m fed up with being a yo-yo!

March 24, 2010 at 10:46 am | Posted in Me, rheumatoid arthritis (RA) | 7 Comments
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On the plus side, at least a yo-yo goes up as well as down! I’ve had another mini-flare (fizzle, floret?) since I last posted, which is why I’ve been so quiet lately … well, that and the fact that work has been insanely busy lately. I rather strongly suspect the two are connected!

I have posted before, once or twice🙂 on the importance of pacing yourself and a week or so ago I gave a great demonstration of exactly how now to do that! Worked long hours, worked part of the weekend, ignored the warning signs, took paracetamol or rubbed in magic herbal rub stuff and just kept on working … and of course woke up one morning almost unable to get out of bed. I did get out of bed … still had deadlines to meet, but came home early in a LOT of pain.

So, what would a sensible person do at this point? Take some painkillers, go to bed and have a bit of a snooze probably. I thought, ‘Well, I don’t feel well enough to work but I still have all this City and Guilds embroidery stuff I need to do, so I’ll go to bed with some research books for that …’

Eventually I reached a point where I HAD to go to sleep, but was still trying not to as I thought that would mean I wouldn’t sleep at night. I got to the point where I realised that I’d need matchsticks if I was going to keep my eyes open and gave in.

At this point I was still in a LOT of pain but did drift off to sleep … and woke up an hour later feeling fine! I know sleep is important, but that’s a really extreme example! And I did sleep well that night too. I must have been really sleep deprived and not even realised it!

Mind you, waking up with five to ten hot flushes (flashes) per night is not exactly helping on the sleep front.

Still, things are looking up – work is now steady (which means that I’ll be panicking in a week or two that there’s not enough), apart from one odd twingey pain in one knuckle I’m not bad on the RA front … the yo-yo is on the upswing again … and will hopefully sit at the top for a while at least!

Puzzling pains

March 11, 2010 at 9:19 pm | Posted in Me, rheumatoid arthritis (RA) | 3 Comments
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I’ve got two different rather odd pains to add to the usual mix at the moment! One is a burning pain that I get intermittently in my spine, a few vertebra down from my neck. It’s not too bad, just a bit odd, a bit burny and a bit tingly. Bizarrely, my physio thinks this is a sign of a bit of stiffness. Does anyone else get stiffness manifesting as burning?! Well, she’s given some exercises for flexing the upper thorax, and if they work then I guess she’s right.

The other one is that, having found ultrasound fantastically helpful for ages now, I’m suddenly finding it incredibly painful on my acromioclavicular joint. (Excuse my showing off my knowledge of joint names – it took ages for my physio to teach me this one and I rarely get the chance to use it … it’s the little insignificant (until it hurts) joint between the shoulder and color bone, right at the front.) It starts off alright and then it very quickly gets incredibly sore and painful. Physio says she’s come across this happening before but she doesn’t know why, and she wonders if it’s just a bit more inflamed than usual.

I hope it’s NOT more inflamed than usual. Did I speak to soon about averting a flare? Today certainly didn’t help on the stress reduction front – all clients want their work now (if not last week), and one thought I could proofread 90,000 words in two weeks. Well, I could if I had nothing else to do … grrrr… Oddly enough I feel more stressed now with both computers working than I did yesterday with both computers not working. Does this say something about computers, I wonder?

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