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.

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.

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?

No improvement in patient access to RA treatment in seven years

February 23, 2010 at 2:25 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, rheumatoid arthritis (RA) | 2 Comments
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According to the Management in Practice website , which is a website for GP practice managers, the delay in getting patients proper rheumatoid arthritis treatment is the same as it was seven years ago. I suppose we should be grateful it hasn’t got worse!

Worryingly, to my mind, they say, “The Commons Public Accounts Committee has revealed that patients could suffer damage to their heart and lungs if access to treatment is delayed.” Well I have two things to say on that point. Firstly it’s not exactly a ‘revelation’ by the Commons Public Accounts Committee, but that’s more of a personal gripe about writing style than anything. More fundamentally there appears to be no recognition that patients could suffer permanent joint damage and a drastic reduction of quality of life if access to treatment is delayed. It’s as though ‘heart’ is the magic buzzword – if you put ‘heart’ in your article, at least when it comes to GPs who are forced to be target driven and probably have a big government target about reducing heart disease right now, then people might take action!

Mind you, they say that the average number of visits to a GP is four, before a patient is referred on to a specialist, and blame this on a lack of GP training. I would have thought that wasn’t soooo bad. It is hard to diagnose. It does vary enormously between patients. And it is possible to show symptoms that appear to be RA and then disappear – it happened to a good friend of mine. So I would have thought that an average of three visits (maybe not four) and attempts at less drastic treatment like ‘take Neurofen’ would not be unreasonable. I was very lucky – I had two visits before my referral and the GP spotted immediately that it might be RA and organised a blood test on the first visit. However if I’d been seronegative (negative RF test) then I shudder to think how long it might have taken!

Apparently, according to the same article on the same Commons report, “GPs receive on average only two hours of teaching on musculoskeletal conditions during their training, including minimal coverage of inflammatory arthritis.” I have to say I find that hard to believe, but if it’s true then it’s pretty scary, and it might explain why it’s taking 6-9 months to get people referred.

They also say that there’s a lack of awareness among the public of what symptoms to look for. I’m sure that’s true, and that does stop people going to pester their doctor when they have intermittent pain, but I suspect another thing that stops people going to see their GP is the difficulty in getting an appointment in the first place! But that’s another story for another post on another day …

An unexpected treat!

November 23, 2009 at 8:13 pm | Posted in Me, rheumatoid arthritis (RA) | 4 Comments
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We’d intended to have a day trip up to Blakeney Point yesterday, on the north Norfolk coast. It’s an area of slightly bleak but beautiful marshland, famous for its bird-life and a sunsets, and a lovely place for a walk. Unfortunately it was pouring when I woke up, and I was as a stiff as a board and in pain, so pretty much my first thought on waking was, ‘We ain’t goin’ nowhere.’ My second thought was, ‘Then again … it is only half-past-five…’

In typical Polly Penguin doing the positive thing fashion I thought, ‘I’m sure if I go to sleep again I’ll be fine when I wake up, and so will the weather.’ I wasn’t. It wasn’t.

But gradually, with some TLC (and perhaps more importantly coffee) from hubby (and some TLC from middle-sized cat too) I started to thaw and bend, and the sun started to come out, so we thought we’d risk it and go.

I’m so glad we did, although our arrival and first few minutes were not auspicious. It’s quite a long drive so we felt the need to avail ourselves of the facilities and then top up on coffee, but although Blakeney is a famous beauty spot it is remarkably unspoiled. This is of course a GOOD THING … until you want coffee and a loo. I remembered seeing a big sign outside the King’s Arms saying ‘Kenco Coffee served here,’ so we trudged down, me still somewhat stiff and pained. There was a girl outside emptying bins who gave us a blank look and then ignored us. I eventually found the door, which didn’t look too inviting, went in and was me by a fellow giving me another blank stare. ‘Are you doing coffees?’ I asked. Blank stare. Then, ‘Nah, we don’t open ’til twelve.’ I pointed out that the big sign outside saying coffee was being served was, in that case a tad misleading. We walked out to the accompaniment of further blank stares.

Things got better after that. We decided to brave the Blakeney Hotel. Nothing outside to say they served coffee – it’s not the kind of place that has notices outside. Far too grand. In fact it’s not the kind of place that a pair of scruffs in walking boots and wellies felt all that comfortable about going in to, but we thought we’d risk it, especially as nobody really goes to Blakeney Point if they aren’t walking boot/wellie brigade. The charming receptionist said yes, they were serving coffees, and where would we like them? We chose the magnificent ‘sun lounge’ looking over the marsh to the sea, and had a very enjoyable coffee there before heading off on our walk. Nicely thawed I felt able to tackle a short potter around on the marsh.

We did even have some sunshine! Then hubby said, quite unexpectedly, that he thought he’d treat me to lunch at the hotel! Yum! I’m sure that melon with lemon sorbet and a port syrup, followed by roast pork with all the trimmings and a rhubarb and ginger trifle would not be what the rheumy would recommend, but hey, it was a treat and it was absolutely delicious! Service was very good too on the whole, although there was some confusion regarding post lunch coffee. (Yes, I know, I drank too much coffee yesterday!) We got it in the end though, and it rounded off a lovely meal very nicely. We sat in the Sun Lounge again and watched the rain lashing down outside!

By sheer amazing luck we’d just decided we’d better wend our weary way when out came the sun again, so we didn’t even get wet walking to the car park. Did get this lovely shot of a boat against the stormy sky, with the sun catching it just right.

Boat at Blakeney

Then home past a lovely rainbow, and even got to see a barn owl drifting along in a field by the side of the road. One of my favourite birds and always a treat to see.

So a day with a very unpromising start certainly turned out to be full of promise after all. And talking of promise, hubby’s promising me one of his Hubby Special Shepherd’s Pies, so I need to go and eat it. (Although you’d think after yesterday’s lunch I wouldn’t need anything for a week!)-

Life without RA seems like a lifetime away

November 19, 2009 at 11:00 pm | Posted in rheumatoid arthritis (RA) | 2 Comments
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I do hope that RA hasn’t come to define my life, but I when Robin at The Truth About JRA asked me about a medical test I’d taken some years ago and I couldn’t remember I found myself thinking ‘That was before R.A. Well … I can’t be expected to remember THAT far back!’

I was diagnosed eighteen months ago.

That scares me. I’m not sure what to ‘do’ with this realisation that RA has become such a big part of me … possibly the best thing would be to screw it up in a small ball and throw it in the waste paper bin.

Thank goodness that if I wake up with this thought at four in the morning I have my trusty iPod to console me – newly loaded with two excellent glum thought-destroying missiles – Cranford (a present from hubby) and Pride and Prejudice (a present from me!) I can also picture Wren building a chocolate pizza, which is sure to cheer me up!

Wet, wet, wet …

November 16, 2009 at 10:38 am | Posted in Me, rheumatoid arthritis (RA) | 8 Comments
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Ouch, ouch, ouch.

It rained all day on Friday, and I had to come home early from work because I was in a significant amount of pain and just not working effectively. It is entirely possible that teaching ‘the boss’ to crochet was not the best move for either my achy hands or our workload, but it was fun!

Ohoh, I thought, here comes a proper flare … then, curiously, in the evening I felt much better (even though it was still wet). The next day I woke up with one of my approximately five-monthly periods! I’ve said before that I often find I’m completely R.A. symptom free while menstruating, and sure enough I was almost symptom free over most of the weekend …apart from period backache of course … well, there’s always something.

It probably helped that we had a beautiful day yesterday, sunny, bright, deep blue autumnal sky, gentle breeze, trees clinging on to the last of their leaves, almost sparkling in a variety of fiery hues … lovely. (Why isn’t fiery spelled firey? Sorry, I have a tendency to go off on tangents like this … you may have noticed.)

Unfortunately it’s been pouring most of the night and it’s still pouring now … and I HURT! ‘The boss’ has a day off today so, as there are only the two of us, I ought to be here manning the (dead quiet) phones, just in case I miss something vital. Not sure how long I’ll stick it though! The problem is, the moment I do decide, ‘That’s it, I’ve had enough!’ and go home, I know some client will ring with something vital. (I even know which client … the same one that picks every single occasion when I’m away to find something urgent that needs doing!)

So I shall probably struggle manfully (womanfully, penguinfully?) on and just collapse these evening in front of some silly comedy on the telly or something. At least I know there is some silly comedy to collapse in front of. There’s Miranda at 8:30 – I’m still not sure about this. It’s only had one outing so far, last week, and it’s very old-fashioned Victoria Wood style humour, pretty basic gags, but the lead, Miranda Hart, is very good. Then there’s huge tracts of the wonderful ‘Jeeves and Wooster’ series to watch, as Hubby got the whole shebang from my bro for his birthday. It’s the series with Stephen Fry and Hugh Laurie in the eponymous roles. (Not sure I’ve used eponymous correctly there, but it’s a great word, isn’t it?) It ran to four series and is ideal to watch when feeling ‘carp’. The script takes a few liberties with the original P G Wodehouse stories, but I rarely find it worries me, and Fry and Laurie have absolutely become Jeeves and Wooster for me, to the extent that when I read the original books I hear Stephen Fry and Hugh Laurie’s voices in my head! (Hmm, afraid that last sentence makes me sound crackers, but never mind … I probably am.)

Right back to work … oh joy … Mantra for the day: “Me gusta mi trabajo, Me gusta mi trabajo, Me gusta mi trabajo…” (I like my work in Spanish … Hoping the mantra might a) help me learn Spanish, and b) convince me that me gusta mi trabajo! (I do … really I do … just not today!)

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