Tags: aches, arthritis, depression, doctor, fatigue, flare, flare-up, GP, hospital, hypothyroidism, joint pain, methotrexate, MTX, pain, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), sleep, stress, T3, T4, thyroid, thyroxine, tiredness, TSH
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 had a very outdoorsy day yesterday, and it was a good job too as the indoor start to the day really did NOT go well. My friend Weeny and I had arranged to go on a guided botanical walk in my local area (some hour’s drive away from her), and she was picking me up at about nine thirty – or that was the plan. I got a call from my friend at eight thirty, and that’s when things started to go pear shaped; Heck, I thought, something’s gone wrong and she’s not coming.
Weeny: Well… are you OK?
Penguin: Fine thanks.
Weeny: Well … I’m waiting to leave!!
Penguin: Erm … jolly good.
Penguin: Oh … was I supposed to ring you and say I was OK?
Weeny: Well I thought you were!
Oops – I thought we’d agreed I’d ring her if I wasn’t well and she thought I was going to ring either way. Bad start as at this point she was already running slightly late, having waited for me to ring.
So before she arrived, and feeling fine, I thought I’d make myself useful for a change and put some washing in the machine. A bit later on I went to make a coffee, slipped on a small puddle of unexpected water on the kitchen floor and fell over enormous cat, who was less than impressed! Having established that I was still in one piece and so was he, I thought I’d better see where the water had come from. You guessed it – the washing machine. The door seal appeared to be leaking. I pressed the door and it stopped – let go and it dribbled again – pressed the door and it stopped, let go and it dribbled again. O-K, so I stand here all morning leaning on the washing machine, or I bung a few towels under the door and forget about it and leave it for poor hardworking hubby to sort out when he gets home. Well, since at this point my friend is due to arrive any minute I decide on the towel option.
Once that was sorted, and enormous cat apologised to, I thought I’d better get some suntan cream on, as although the weather didn’t look all that promising, I didn’t want to risk it. The suntan lotion leaked too.
OK, I’ll be honest, it didn’t actually leak but somehow I managed to squirt it all over me and all over my t-shirt. Expecting the doorbell to ring any second I frantically scrubbed at the t-shirt, realised it was hopeless, changed rapidly, reminded myself I was supposed to be having a fun day off and managed to calm down and de-stress, only to realise that Weeny was now fifteen minutes late! Round about this point the doorbell did finally ring and there she was, standing there going, ‘Come on penguin, mush-mush, we’re late!’
‘OK, OK,’ I said. ‘Don’t panic. I’m ready. Got my camera. Got suntan cream on, got my jacket, got my notebook and pencil, got my RAC card … keys … erm … where are my keys?’ I think Weeny thought I was joking since there’s a longstanding joke relating to her and lost keys, but alas, I really couldn’t find them. Five minutes later they turned up … in the door.
Needless to say we got stuck behind every slow-moving vehicle in Norfolk and neither of us had thought to bring the mobile number of the chap whose walk we’re going on, but dead on ten o’clock (which was when we were due to meet him) we rolled into the car park … and we were the only car in it! Right – so is it the wrong day, wrong place, what’s going on? Weeny was just about to phone her hubby to get the mobile number for the walkies chap when I had a flash of inspiration.
‘Weeny … you know his instructions said “go over the level crossing and it’s the car park on the left”? Well … what if we went over the level crossing the other way? Then it would be the car park over the other side of the crossing from this one …”
“Oh yes,” says Weeny, “there was a car over there…”
Sure enough, we turned around and went back over the crossing and there was a much larger car park with one solitary car in it and one solitary man scrabbling about on the ground with a huge camera trying to photograph a small plant. That’s got to be our man, we thought, and sure enough it was.
After that the day went much better! We spent a fascinating three hours learning about and looking at a variety of plants with fantastic names like Smith’s Pepperwort, Tower Mustard, Stork’s Bill, Shepherd’s Cress and Mouse-ear Hawkweed … and we had Mr Expert to ourselves, which was a bit of luck! (For us – not for him, from a financial point of view, but he never made us feel that we were wasting his day!) Best of all, my RA was totally quiescent – the idea of me spending three hours on my feet a few months ago would have been quite laughable (in a depressing sort of way, rather than a ‘funny ha-ha’ way!)
After a splendid morning we headed back to my place for lunch – both starving after all that fresh air and exercise. Of course we got stuck behind all the slowest moving vehicles in Norfolk AGAIN, and sat there hurling abuse at them and shouting ‘Oy – can’t you see we’ve got an emergency here. We want our LUNCH!’ A very nice lunch it was too, and then off for another stint of outdoorishness, this time butterfly-spotting on another local nature reserve. We didn’t have much luck with that – we were looking for three particular species which we know for sure have been in that area over the last few days. We didn’t see the faintest sign of two of them. The third, Green Hairstreak, we caught brief glimpses of flitting high up in the scrub – and I mean brief. Just enough to go ‘It’s definitely green!’ Still, even though we didn’t see what we were looking for, we had a lovely afternoon in the sunshine, and did see a few other interesting things.
Then I headed home to hubby, who said, rather woebegone, ‘I suppose that means you won’t want to come out for a walk with me this evening?’ So out we headed again – to yet another local nature reserve, for a brisk walk to our favorite bench and back before dinner.
I must say I felt SO much better yesterday evening than I generally do after a day in the office, and I slept like a log!! Still, something has to pay for the days off. And although I did find myself getting pretty stiff today, back to being stuck in the office again, apart from that the RA has remained blissfully quiet. Long may it last. I don’t know if it’s the change in the weather or what, but I’m making the most of it. We’ve been out almost every evening this last couple of weeks, and a fair bit over the weekend. Who knows, at this rate maybe I’ll even lose a bit of weight in time for THE wedding. Then again, given that Weeny brought some rather yummy Greek Salad for lunch … maybe not.
Tags: cats, children, day out, folic acid, gardens, methotrexate, MTX, peacock, RA, Rheumatoid arthritis
Saturday was an absolutely glorious spring day – sunshine by the ton! My Saturday started by being woken by an unexpected visitor in the garden. I thought it was a cat and couldn’t understand why our cats weren’t responding to these incredibly loud meeows. The cats, of course, knew better! Here’s a picture of our visitor.
The sight of him was a grand start to the day, but it just got better and better. Thanks to the f-f-folic acid on F-F-Friday I was f-f-feeling f-f-fine and I braved my first trip out in Hubby’s open topped MG. As bravery went, I wasn’t very! I had a long-sleeved t-shirt, two jumpers, a jacket, a ‘slanket’, a blanket, a hat and gloves!! It felt fab though, being driven along with the wind in my hair … there were times when I felt as though the wind was in my very bones, but mostly it was heavenly.
We visited East Ruston Old Vicarage Garden first of all – an extraordinary place which must surely have pioneered the idea of garden rooms. It’s very close to the coast (as you can see from the picture, where Happisburgh (pronounced hays-borough of course!)) Lighthouse is visible through a cleverly placed hole in a hedge, but due to incredibly skillful planting and deep, deep double hedges, they can grow the tenderest of plants, including stunning camellias.
It has to be one of the easiest places in the world to get lost in because there are so many paths and so many nooks, but although it feels really spacious it’s actually quite small so not even I can really get lost for long!
We made a couple of friends while we were there. The first can be seen below on Hubby’s lap. Note the gazes of mutual adoration. Not sure who’s cuter!
The second was equally cute but slightly more worrying. We’d found a nice secluded bench to sit on and soak up the sun for a few minutes, and were enjoying the peace and quiet when suddenly a very small child came barelling in from nowhere and jumped up on the bench next to hubby, pulling his legs in and crouching as small as possible. I whispered ‘Are you hiding’ and he nodded. After a few seconds, when no one had come to find him, he got bored and said ‘Did you know there’s a dinosaur head over there?’ We said we didn’t. (In fact we knew there wasn’t, because we’d already noticed the cow’s skull complete with horns in the part of the garden designed to mimic the Arizona desert, complete with a range of cacti etc.) I asked him if he was sure it was a dinosaur head and he assured me that he was – it was, he said, in fact a Tyrannosaurus Rex head. When we asked him how he knew he looked at us pityingly and said ‘Because it’s got horns!’ Then, grabbing a rather surprised Hubby’s hand, he said ‘Come and see!’ and dragged Hubby over toward the cow’s skull. ‘You’d better come with me!’ said Hubby hurriedly, as images of angry parents, police, child abuse accusations and court cases flashed through his mind! So off the three of us trouped, like a line of ducks, small child pulling Hubby along by the hand and Hubby pulling me along.
Fortunately at this point small child’s father caught up with us. More fortunately he obviously knew his son well! ‘Ah, I see little Jonny has adopted you. Sorry about that. He has a habit of doing that.’ I explained that we were off to see the Tyrannosaurus head (and added ‘cow skull’ sotto voce when he looked confused). Laughing and apologizing he came with us, and when we’d admired the most impressive dinosaur and Little Jonny was satisfied, we went our separate ways. As we wandered of Father said to Jonny, ‘Which way shall we go now then?’ and Jonny replied loudly, ‘Well I’m going with them!’ Fortunately Father persuaded him otherwise, probably with a bribe of ice cream as we saw them later in the cafe!
The rest of the visit was less eventful but still very enjoyable, and after a tea break we headed off around the coast and stopped at Cromer. (Penguins like to see the sea!) We finally rolled home just as it was getting dark, tired by very content. Hubby commented that I was looking and sounding and moving better than I had for quite a while – I felt it too. Amazing what a spring Spring can put in my step!
Feeling a tad creaky today (Monday) but it’s m-m-m-Methotrexate day so hopefully by tomorrow afternoon I’ll be full of the joys of spring again (although perhaps a little queasy as I’ve not managed to see the doc about changing the folic acid dosage and timings yet!)
Tags: aches, arthritis, flare, flare-up, pain, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, sleep, stress, tiredness
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!
Tags: aches, arthritis, computers, computres, exercises, flare, joint pain, neck pain, physio, physiotherapy, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), stiffness, stress
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?
Tags: arthritis, diagnosis, occupational therapist, OT, pain, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA)
Is it me, or do others with rheumatoid arthritis see RA possibilities everywhere? I’ve told my bro, who has had neck pain for years and gets inflamed knuckles, that he really should get an RA test, even though it’s incredibly unlikely in a lad his age. (Unlikely but not impossible, as Rhuematoid Arthritis Guy can testify, and not an unreasonable suggestion given that he’s my brother and we do have family with RA.
However, it starts to get a bit silly when you’re sitting chatting to someone and start thinking ‘ooh, they get stiff in the mornings; could be RA.’ Well yeah, I have to remind myself, but when they say stiff they probably mean their muscles ache a bit because they went jogging last night, not that they can’t move their joints. But then again, RA is notoriously hard to diagnose, so when you’re sitting in the OT’s room chatting to another patient who is being treated for ‘carpel tunnel syndrome’ in both wrists, has been referred to the podiatrist because of pain in both feet, finds it hard to grip the steering wheel for any length of time, gets ‘dead arms’ in the middle of the night just like I do and finds it difficult to be a passenger even in the car for long journeys because when she gets out she’s ‘stiff all over’ … oh yes, and this all started with ‘the change’ … you can’t help wondering, can you? Or can you? Is it just me?
It’s hard to keep your mouth shut sometimes, but I managed it. For all I know she’s been thoroughly tested for it and hasn’t got it, but I couldn’t ask; I’d never even met her before that day. It makes me wonder even more because when I was diagnosed with RA I’d gone to the doctor saying, ‘Help – I think I’ve got carpel tunnel syndrome!’
I suppose I shall never know, and I really hope I’m barking up the wrong tree altogether, for her sake … but I can’t help wondering. Am I being silly?
Tags: arthritis, consultant, DMARD, doctor, hydroxychloroquine, joint pain, methotrexate, MTX, National Institute for Clinical Excellence, NHS, NICE, NRAS, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology
I got my shiny new NRAS magazine through the post today. Great to see an article by Rheumatoid Arthritis Guy in there! Well done RA Guy! But there’s always something in there to get me aeriated, and the first magazine of 2010 was no exception!
Interesting also to see a two-page spread on the ‘European Fit for Work Report’. Frankly, I’m not sure there were that many surprises in there, although I was a bit surprised at the number of people who become ‘work disabled’. Apparently 40% leave work altogether within 5 years of diagnosis, which is not happy reading. However, it appears that the main reason for this is people being diagnosed and treated too late or incorrectly. The report recommended ‘new and more inclusive methods to evaluate the cost-effectiveness of treating musculo-skeletal diseases in particular; one that considers more than the up-front costs of medical expenditure and incorporates wider social and economic factors.’ No kidding. In other words, this report recommends doing exactly what NICE doesn’t do. The article goes on to say that ‘NICE in the UK has already begun such a deliberation, although no decision has been reached to date.’ No surprise there then!
Now, my honorable friends, please turn to page 12 of your NRAS magazine. Don’t have one? Not to worry – here’s the headline: ‘People on Enbrel stay in work longer’. It goes on to state that a 500-person study (the COMET study if anyone’s inclined to look it up) showed that those with active early RA were three times less likely to stop working if treated with MTX and Enbrel, rather than MTX alone. Absenteeism was also reduced by almost 50% for those on the combination therapy. But here’s the rub – NICE won’t allow anyone to start on a combination therapy like this until they have been proved unresponsive to at least two other DMARDS including methotrexate … so when does early stop being early? It takes, I would think from my own experience, at least six months to show that a DMARD is not working for you, because it can take them that long to start working. So you’re diagnosed (probably not immediately), you’re given a DMARD if you’re lucky, perhaps hydroxychloroquine, for six months; it doesn’t work. You try MTX (either on its own or in combination with HCQ) for another six months. That doesn’t work either. You’ve now been diagnosed for at least a year. Is this still early enough to count for this study? Perhaps it is. If so, fair enough. If not then are NICE ruining people’s chances of staying healthy yet again. I don’t know the answer – I just pose the question.
And finally to a little article by a brave lady called Jean Burke, who works with NICE to provide a patient viewpoint in their deliberations. Rather her than me but I am full of admiration. Apparently she was asked by a member of an appraisal committee ‘Surely a twenty percent increase in quality of life isn’t worth bothering about?’ Well, I suppose that’s why they need the patient viewpoint. If you’re reading this blog as someone with RA I imagine you’ll see it her way immediately; I know I did. She points out that if the extra 20% means she can make a cup of tea in the morning, go to work or walk to the shops then yes, it’s worth it!
So long as NICE remains in its ivory tower, untouched by all these deliberations about the socioeconomic effects of diseases and so on, I simply cannot see how the system can ever work effectively.
Tags: appetite change, appetite gain, fatigue, GP, hormones, hunger, insanity, medicine, menses, menstruation, monthlies, neck pain, norethisterone, periods, R.A., RA, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), tiredness, weight gain
No I’m not actually sick, I’m just sick to death of the way hormones seem to rule my life. Until Wednesday I’d been menstruating pretty much constantly since before Christmas. By Sunday last I looked and felt like death warmed up, was bursting in to tears at the slightest provocation (or no provocation) and figured it was time I saw the doc. I knew I’d have trouble when she recommended a tablet that messes with the hormones, but heck, what else are you supposed to do stop a continuous period? So I bit the bullet and went on to Norethisterone (synthetic progesterone). I was a good girl – I didn’t even look at the side effects when I started it on Tuesday. I didn’t even look to see it was synthetic progesterone at the time.
Well the good news is it worked like magic – by Wednesday my seemingly never-ending period had stopped, the hot flushes hadn’t come back and I had very few RA symptoms. By yesterday I felt tired but so much better than I had been feeling. Then last night I woke up at two in the morning with a gnawing hunger pang in my belly – I lay in bed fantasising about porridge with tons of Golden Syrup on it! Fortunately Middle-size Cat and Enormous Cat were both firmly on top of me, purring and being cute, so I resisted the temptation as I didn’t want to disturb them. (Note, disturbing hubby didn’t even enter into the equation – awful, aren’t I? Then again, not much does disturb hubby once he’s asleep!) It’ll pass, I thought.
I woke up again at about six-thirty with a really awful gnawing hunger pang in my belly again! Hmm, I thought, this isn’t good. Heck, it’s Friday. Let’s go wild and have some porridge (instead of the usual and rather better for me Bran Flakes). I had some porridge. The hunger pangs didn’t go away. I made my lunch – beef salad. Normally when I’m making my lunch the absolute last thing I want to do there and then, straight after breakfast, is eat it. Today I could have eaten the whole damn lot. (I didn’t, but I could have done.) Tiny and Middle-sized cats were lucky to get their usual rations of my lunch today!
The gnawing hunger pang in my belly has NOT gone away. I ate a mid-morning snack of soya nuts, I had another slightly later morning snack of a few grapes and some dates. I had an apple. (All this before lunch!) Still gnawing hunger pang in my belly.
I had my lunch. Gnawing hunger pang in my belly. I hate to admit this but I then went to the local bakery. I’m not going to admit to what I bought (and ate) but suffice it to say that Mrs Baker would have been quite shocked if she’d known I was off back to the office to eat it all there and then, but that’s what happened. So would hubby, for that matter. He would have rather hoped I might have brought a bun home for him. (Sorry darling!)
Guess what? Gnawing hunger pang in my belly – still. My helpful friend Weeny’s response was, ‘You’re hungry? So what’s new?’ (She’s renowned for her sympathy skills – her hubby and I tease her regularly about their lack!) The thing is this isn’t just hungry – it’s like a pain, it has to be pandered to; it’s constantly demanding. I can think of nothing but food. I just want to eat everything in sight. I look at my half-cup of cold coffee and picture a big hot chocolate swirling with cream and marshmallows; I look at the snow swirling around outside and think of ice cream; I don’t quite look at ‘the boss’ and think ‘roast beef’ but believe me I’m not that far from it. And to add insult to injury I’m doing a transcription all about chocolate!! (I kid you not.)
You know what? I don’t think I’ll be taking any more Norethisterone! I looked at the side effects this morning and sure enough weight gain and appetite change were nestled amongst them. I’ll put up with a constant period, I’ll live with anaemia and fatigue if I have to, but I really can’t cope with any more of this!
Tags: fibromyalgia, menstruating, menstruation, pain, periods, R.A., RA, rain, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, weather
I’m baaaaaaaaaaaaaaaaaaaaaack! Don’t suppose anyone missed me (sob) but if you did wonder where I’d gone, I’ve been quiet because I’ve been having MAJOR computer problems at work and major getting my City and Guilds embroidery modules done on time problems at home!
Yesterday I was completely convinced I’d sussed my R.A.! I know there’s a link with the weather and I know there’s a link with hormones. I haven’t kept a diary but I thought I saw a pattern emerging. The pattern I thought I saw was that hormones were in the lead – provided I was menstruating or there abouts then, regardless of the weather, I’d be pretty good. If was in the midst of hot flushes then I would be less good and even worse when it rained.
Of course that turned out to be far too neat and tidy! Today I’m menstruating again (oh joy!), grumpy as hell and full of aches and pains. Aaaaargh. Of course things are complicated by the fibromyalgia, but it all FEELS like joint pain right now (apart from the period-related back ache of course!) A little hard to be sure though.
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:
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!)