Pollyanna Penguin’s RA Blog
This is a blog about me, my recently diagnosed rheumatoid arthritis and my struggles to stay positive about it!Archive for Me
The Railways Move in Mysterious Ways … but they move
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:
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!)
An unexpected treat!
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.
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!)-
Wax bath therapy
I’m slightly confused because my lovely physio has suggested wax bath therapy for my hands … and referred me to an occupational therapist for it. My confusion arises from the fact that I would have thought that wax bath therapy was a physio sort of thing to do and definitely not an OT thing! I wonder if the OT will say the same when I see her? I wonder how long it will take to see her, given that it took seven months to get a physio appointment.
Anyway, if anyone has ever used a wax bath could they let me know; I’d be really interested to know if it helped at all. I did find a research paper that said it could be helpful in RA if combined with exercises but not on its own – well my hands certainly get plenty of exercise with all the typing and craft stuff, and I do some simple range of motion type exercises in the mornings too, so perhaps the wax thing will do some good.
A little bit of trumpet blowing
Actually trumpet blowing was one thing I didn’t get round to over the weekend, but I did finish off these three craft projects, and I’m especially proud of this bag.
It’s not my design, it’s from Joan Hawley’s Lazy Girl Designs (And no, she hasn’t sent me a free pattern, I don’t know her personally and I am in no way being paid to endorse her designs!) The thing is that I don’t DO quilting – in fact my friend Steph and I are kinda proud to stick out like sore thumbs at our sewing group as the ones who DON’T DO QUILTING. And yet I managed to follow the instructions in the midst of period and fizzle … so well done to Joan H for making them so nice and clear. (OK, so I did have to sew one bit on three times ’cause I kept messing up, but only one bit …)
I also completed the crocheted twirly scarf, which is a lot nicer ‘in the flesh’ so to speak than it is on the photo.
And finally, I have at last completed this wall-hanging which is part of a City and Guilds embroidery course I’m doing. I’ve lost track of how long I’ve been working on this on and off. It’s ‘all my own work’ in the sense that I designed it as an embroidery/applique from scratch, although it’s very closely based on part of an old Japanese print.
If anyone’s very familiar with the print they’ll notice that my girl is a mirror image of the original. Oops! Wasn’t meant to be but by the time I realised, it was too late.
So now I have to start on the next bit of my City and Guilds module, and I’m not looking forward to it because it has to be an abstract based on my face! I don’t like abstract much and I don’t like my face much either! Oh well, it’ll be a challlenge!
Wet, wet, wet …
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!)
Seem to be OK today …
I was getting to the point yesterday afternoon where I was fairly convinced I was having at least a fizzle … some reasonably significant pain in the afternoon, tiredness too, and by the time I went to bed I couldn’t find a comfortable position because however I lay something hurt.
I’d had a busy, fun evening and a very unhealthy dinner! Yesterday was the night of our local sewing/quilting/crafting/whatever group and as a friend of mine who works locally but lives some way away also goes along, I asked if she wanted to come back to ours for a quick bite to eat before we went. I warned her it would only be pizza because we were in a hurry … so not a healthy start there … and she kindly contributed a chocolate putting with chocolate sauce AND cream for afters! Oh dear … but yum.
Anyway, here’s the thing … I feel much better today! So perhaps pizza and chocolate pudding is my ideal RA diet?
Erm no … before i got lots of angry comments, I’m not entirely serious! But it does show how careful you have to be not to attribute RA (or lack of it) to things without doing some serious research and testing!
My (Super) Hero
Picture the scene: it’s three in the morning and I’m in pain and wide awake. Tim Piggot-Smith has failed me – for once even his dulcet tones reading David Starkey’s Monarchy: The Beginnings haven’t lulled me to sleep. Neither has a podcast of a lecture from the wonderful Dr. Stuart Lee on Anglo-Saxon History – my other failsafe. I’m at my wit’s end.
Suddenly there’s a crash, a bound, and a superhero comes flying through the bedroom window and lands on the bed with an enormous thump. Yes, it’s The Grey Shadow, feline super-hero extraordinaire, to the rescue. A lick, a purr and I’m already feeling better.
Soon the gentle sound of purring has done the trick and I’m fast asleep.
I wake up at around 5:30 and The Grey Shadow has mysteriously disappeared. My ankle’s in agony. Why? Ah yes – Enormous Cat is fast asleep on top of it. I wonder where The Grey Shadow went? He would have been far too considerate to sleep on my ankle.
Thanks to Wren at The Rheuma Blog for reminding me about this incident with her post on wee beasties! What would we do without them? I’d far rather put up with the discomfort of the occasional sore ankle than not have these nocturnal visits from my superhero at all!
Enormous Cat
Three Golden Rules for Potential GPs
1. Don’t become a GP if you have the personality of a lettuce.
2. Remember that it’s probably going to get pretty boring by Thursday afternoon – loads and loads of six-minute appointments seeing snotty little people who should have stayed at home – but it’s part of YOUR JOB NOT TO SHOW HOW BORED YOU ARE!
3. When examining a patient it might be helpful to say things like ‘I’m just going to feel your neck for glands’. Otherwise you may one day find yourself pinned to the wall at the back of the surgery by an angry young man who thought you were trying to strangle him.
Yes, you guessed it – I just saw a GP I didn’t really take to. And, as you might also have guessed, I’ve gone down with a stonking cold, probably courtesy of hubby, although mine is NOT flu. (No, I’m not suggesting he’s had ‘man flu’ – he had a temperature of 102 for two days; but I haven’t had a temperature at all.) It went with an equally stonking sore throat. When I looked in the mirror (as you do … don’t you? Well I do), I could see little red wheals right across my throat. When the GP looked he said he couldn’t see anything. Hmm, that’ll be because my tongue was in the way I expect. However, as he’d already decided to give me antibiotics given the fact I was on MTX for the R.A., and as we had had an instant personality clash and I wanted to get out of there a.s.a.p. I didn’t push the point.
So – all the usual drugs plus paracetamol, sudafed, antibiotics (third lot in a month I think). I’m heartily sick of all these drugs … but then again, the MTX is WORKING, so who am I to complain?
Oops! Pill trays are NOT infallible!
I wondered why I was feeling so peculiar this morning … put it down to the fact that hubby and I both slept terribly last night, as did half of Norfolk if hubby’s patients’ comments are anything to go by. Now I wonder if it was more than that.
When I got home this evening I went to take my evening pills (augmented at the moment with antibiotics for the lump doing Vesuvius impressions on my arm) and found it empty.
I then had a vague memory of taking my pills after breakfast this morning and thinking, ‘Odd that I forgot to take them before breakfast as I usually do!’
You guessed it – I didn’t forget to take them before breakfast. I had my evening pills about twenty minutes after my morning pills.
I think I should probably be panicking and phoning NHS Direct and stuff, but given that that was now nearly 12 hours ago and I’m still sitting here writing this, I figure there’s probably no need. Luckily the only apparent ’side effects’ were the desire to eat a horse (not literally of course, although who knows what went into the pasty I ended up having, most unhealthily, for lunch) and a feeling of general wooziness which may have had nothing to do with it given that a) I did have a lousy night and b) I’ve been feeling dopey all week!
NICE refuses yet another drug for R.A.
NICE have rejected yet another R.A. drug – this time for ‘moderate to severe R.A.’ It’s RoActemra (tocilizumab), known as Actemra in the U.S. apparently.
OK, so right now this isn’t a huge personal concern for me – apart from the ’scrofulous pustule’ and other minor unpleasant side effects, the methotrexate is doing its job; but it’s a huge concern for R.A. patients in the U.K. in general, and potentially also for me personally in the future.
Here’s a link to an article about it, as there’s no point in me saying everything that’s already been said … and that I’ve already said about other drugs on this blog! In brief, and I quote: “the Committee has concluded that, at an approximate cost of £9,295 a year for a patient weighing approximately 70 kg, the therapy is just too expensive for use on the NHS and would not represent a cost-effective use of resources.”
I’d better start losing weight now, as if I ever need anti-TNFs in future NICE will probably decide it’s too expensive to fund overweight patients, as underweight patients need less drug! Well I suppose if NICE are inadvertently making me lose weight, that’s one positive benefit of them!
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