Tags: aches, filing, RA, Rheumatoid arthritis, transportation, Wales
I have just got back from a short trip to Wales – or a long trip, depending on how you look at it. I was there for about 2.5 days – but I also spent 16 hours travelling! I don’t know why sitting on your butt on a train is tiring, but it is! Fortunately I was fine RA-wise while I was there, even though I was visiting a friend with a dog and a bunch of mad cats that periodically had to be chucked off me, the bed or sundry bits of furniture, and even though we spent most of the 2.5 days filing.
I am NOT good at filing. First we cleared out a load of old papers from a filing cabinet, and then we cleared out a load of papers from boxes and put the ones she needed to keep IN the filing cabinet. The trouble is that neither of us are any good at filing – firstly thinking of suitable headings for things – like car insurance: do you file it under insurance, car insurance, motor insurance, auto insurance? ‘Well, where would you look for it when you went to find it?’ says I. ‘Dunno,’ says she … ‘I’m putting under car insurance,’ says I with a sinking feeling that EVERY time she’s looking for something in future I’m going to get a phone-call asking what we filed it under.
Secondly the actual physical act of filing. It’s a lot of hand movement for one thing, and my hands are rather sore this morning. Also, you know those cabinets with hanging files that you put papers in? Well I KEPT putting the darned papers in BETWEEN the hanging files so they ended up on the bottom of the drawer instead of filed. I’d only realise hours later when I went to file another car insurance document only to find that the car insurance file was empty. ‘I know I filed some of these earlier … ah … there they are, on the bottom of the drawer …’ It was biiiiig, deep drawer in quite a tall cabinet. I think this may be why my shoulders are also aching this morning.
Still, even with all that going on I was fine … until I got home. I think it’s a question of when you stop you realise how tired you are. While I was there I did not stop! I have now ground to a rather achy halt!
Tags: aches, arthritis, exercise, fatigue, joint pain, knee, pain, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, sleep, stiffness, tiredness, work
I’ve spent the last six months on a very useful course run by our local university business school, on helping small businesses to grow. It’s been great and I’ve met some lovely people along the way. Tonight we were asked to do a ‘showcase’ where each of the businesses on the course had a little exhibition stand and said a few words into a mike and generally chatted to invited guests, university bigwigs, previous course attendees and each other.
Unfortunately I was dreading it because I knew the admin was a mess. Fortunately although the admin was a mess, a handful of very brave people had stepped in at the last minute to salvage what they could, and they did a marvellous job. However, as suspected, when we arrived to set up our exhibit, rather than the floor-plan with everyone’s tables labelled, display boards there and of course, vital for me, and definitely requested in advance, CHAIRS, there was organised chaos.
Fortunately the wonderful people who’d stepped in at the last minute were on hand to sort everything out, and equally fortunately we’d brought some folding chairs with us! I did feel sorry for some of the others though, as there were no chairs available at all.
Having said that, once the evening got going I hardly had a chance to sit down, as we were all buzzing about and chatting to each other. There was a really good atmosphere and, in spite of not looking forward to it, we had FUN. On the other hand, I’m absolutely wiped out, completely shattered, totally exhausted … and my left knee is giving me gyp from so much standing around.
Entirely my own fault of course. I had a chair, I have the capability to sit down in it, but I suppose it was partly not wanting to miss out on anything and partly the old not wanting to admit I had a problem, leading to one of those conversations. You know the ones: ‘My auntie’s got arthritis too. It’s all cleared up though since she started rubbing in bindweed’ or ‘all you have to do to get rid of it is lose some weight.’* What I should have done was go and have a chat with the yoga lady and get her to give me some stretching exercises – but every time I looked in her direction (at least right up until the last few minutes) she was deep in conversation.
Oh well, working from home tomorrow so I think that might start with a bit of a lie-in!
* Not that I’m denying that would help!
Tags: arthritis, consultant, diagnosis, doctor, GP, hospital, joint pain, R.A., RA, rheumatoid, Rheumatoid arthritis, rheumatology, stress, weather, work
I really hate the winter half of my six-monthly hospital appointments. I suppose it could be worse. I have the nurse practitioner visit (usually bad) in summer (not so bad), and the consultant or registrar visit (usually OK) in winter (not so good), so you could say it balances out. I have just had my visit to the register – a very nice young lady who, while obviously struggling with the basics of the English language, still clearly had an excellent grasp of autoimmune diseases! It took rather a long time to find any of that out though.
At the risk of sounding like one of those very bad school essays (‘What I did on my holidays: I got up at 4am. Mummy was cross and said go back to bed. I got up again at 6am. We left the house at 7am. We arrived in Wales at 11:30 am’ etc.) here’s why I hate the winter appointment. I left work at 10:15 for what should have been an approximately half-hour drive to the hospital for an appointment a bit after 11. Why leave such a long time? Because it’s December. The weather was a bit rubbish and if you have an appointment you can guarantee to get stuck behind something slow. I did. Then there’s the car parking – always fun. I struck gold in the third car-park I tried. As you can imagine, after driving round three car parks, all for several minutes, I was starting to cut it fine, but as soon as I reached the Rheumatology Department I realised I need not have worried. The waiting room was heaving! I handed in my appointment letter, took my seat and waited … and waited … and waited. The usual charmless nurselet called me in, did the ‘weigh and wee’ and then I got sent to the equally busy inner weighting room … where I waited … and waited … and waited.
After about an hour a nurse came out and wrote next to my consultant’s name on the notice board ‘running one hour late’. Twenty-five minutes or so after that, I finally got seen. Fortunately I’d taken in a good book. Unfortunately, as it wasn’t so cold as last year, and they were probably even more short-staffed, no one offered us a drink. I hadn’t had time for a drink on arrival because it was time to check in, so I was a bit parched.
Useful appointment with nice registrar followed, which culminated in a further referral (who knows where, who knows when … but no hurry, nothing urgent!) and a blood test. ‘Will you give me a form so that I can get the test at my GP?’ I asked. ‘No, no,’ she said, no doubt intending to be most helpful, ‘you have it here. Just go to the blood test department …’
So, by now thirsty and pretty peckish too, but thinking I’d better get this done before heading for a café, I went and found the blood test department. Guess what? The waiting room was heaving AGAIN. That’s another reason for hating the December appointment. People get ill in the winter!
I went up to reception and got a ticket – 73. The number just called was 63. Only ten, I thought. Surely it won’t be that long. ‘What’s the waiting time likely to be, just roughly?’ I asked the receptionist. ‘Hmm,’ she said. ‘Could be up to 45 minutes … but it might be much quicker.’ Aaaaaaaaaaaargh. 45 minutes? Aaaaaaaaaaargh! And we were so busy at work too. So I phoned the duty junior penguin at work and went ‘Aaaaaaaaaaaaaaaargh’ down the phone at her. (It’s in the job description – ‘be prepared to listen to senior penguin going aaaaaaaaaaaaaaaaargh periodically’.)
As it turned out though, the queue did go down quickly. All of a sudden they were charging through people and I was the only one left, and then my number came up, and in I went to be processed. (It did feel a bit like that this time, but given the numbers they were having to get through, I can’t really blame them!)
And so back home, stuck behind another slow lorry most of the way and then, somewhat peculiarly, a slow ambulance! I eventually got back into work at around 2.15.
Four hours out of work: total time with medical staff, approximately 15 minutes. Frustration factor: high.
Merry Christmas, Felis Navidad, Feliz Natal and Happy Chanukah to all.
Tags: aches, arthritis, cold, flare, flare-up, joint pain, knee, knee cosy, pain, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, stiffness, stress, warm, weather
Oh crumbs – it’s snowing! You may remember that in my previous post I was winging about the cold the other day; well, it’s colder.
Yesterday the journey home was worse than I ever. I had a hectic day at work but I felt fine (if a little stressed) … and then I left the office to go home.
The moment my left knee found itself outside it started to complain, and the complaints got louder as I drove, to the point where I knew I wasn’t able to concentrate a hundred percent on my driving. Not good!
Although I get the ‘traditional’ sore and achy hands and feet of RA, the worst affected thing has always been my left knee, and if I have a flare that’s usually where it starts. This is the first year I’ve really noticed the cold affecting it though.
I’ve been trying to think of a way to keep that knee warm, specifically while driving. A lap blanket (Afghan in the US I believe) wouldn’t be safe, as it might slip into the foot-well and get tangled with my driving foot. (Fortunately, considering the sate of the left knee, I drive an automatic!)
I’ve decided the solution might be a ‘knee cosy’! I’m not quite sure yet how it would work. Perhaps a combination of a sports-style knee protector and a pouch that could incorporate one of those gel reusable hand-warmer type things?
I’m disappointed, but not surprised, to discover I’m not the first person (by a long, long way) to think up the neat ‘knee cosy’ moniker, but people are using it as a name for lap blankets, not for my cunning plan. I may have to make this my Christmas craft project!
Tags: aches, arthritis, R.A., recipe, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), stiffness, weather, work
No, unfortunately I have not just come back from a spa break or something. The warm, spicy sauna was my kitchen a few hours ago, and very nice it was too, having come in from work absolutely freezing.
The trouble is, if you can call it a trouble, that I only live a couple of miles from work, so I get into my freezing car at the end of the day and arrive home frozen to the core ten minutes or so later, as the car hasn’t had time to warm up. No good for me or the car really! I definitely find joints stiffen more when they’re really cold, and I generally arrive home pretty achy at this time of year. Hubby, being the good sort he is, is usually there to provide warming hugs and coffee (unless he’s working late), but today I decided I needed something really warming for supper too.
So I made Polly Penguin’s Super-easy Vaguely Moroccan-inspired Chicken and Couscous, which always goes down well. Since this involves much froiling (a combination of boiling, broiling and frying, except that really it isn’t frying as I don’t use any extra fat) and lots of lovely warm-smelling spices, by the time I’d finished the kitchen was steamy and smelling like a spice market, and I was WARM! Even warmer when I’d eaten it.
If anyone else fancies turning their kitchen into a spicy sauna, here’s how, but I warn you it’s a bit vague as recipes go because I don’t tend to measure anything, including time!
Polly Penguin’s Super-easy Vaguely Moroccan-inspired Chicken and Couscous
Serves one penguin and one hubby
1 large onion
1 chicken breast (I’m sure Quorn would work equally well)
Half a can of tinned plum tomatoes
A couple of squirts of tomato purée
6-8 green cardamom pods
1/2 teaspoon of ginger
1/4 teaspoon of cinnamon
A generous grating of fresh nutmeg
Couscous – I like to cheat with a packet that’s got bits and bobs mixed into it
Dry stir fry the chicken over a fairly high heat, adding a little boiling water as necessary to stop it sticking to the pan. Add the onion and a bit more water and turn the heat down. Lightly crush the cardamom pods, and chuck these in along with the rest of the spices. Allow the onion to soften for five mins or so adding boiling water as necessary. Then chuck in half a can of tomatoes and allow to simmer on a medium to high heat until it’s reduced (i.e. a lot of the water from the tomatoes has boiled off) . Then turn down to a low heat and prepare the couscous as per instructions on pack. This generally involves waiting five minutes. Once the couscous is prepared and you’re waiting for it to be ready, add the tomato purée to the pan and stir in, which will thicken everything up beautifully.
Serve up and enjoy – and feel lovely and warm and, if like me you hardly ever cook properly, virtuous!
The whole thing only takes about half an hour from getting the onion out of the cupboard to serving up, so you don’t have to be on your feet for ages either … and there’s plenty of time in between for a quick sit down!
(I kinda spoilt the warming effect by following this up with a toffee ice cream … oops!)
Tags: aches, flu, flu jab, GP, medicine, neck pain, NHS, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), sniffles, sore throat
I have the post flu-jab sniffles, so presumably that means my immune system is going to respond and do its job in creating anti flu antibodies, which will be very handy if we have a flu epidemic this year … provided of course that it’s the ‘right’ flu. I had a slightly sore throat yesterday afternoon, post flu jab, and distinct sniffles this morning, but at least the big red lump on my arm is now a big red pinprick with a small red rash around it, and much less painful.
All more than worth it though if it keeps flu at bay! If the Flu Jab had a Facebook page I’d sign up to be its fan. (Oh lordy, perhaps it does … )
Tags: aches, arthritis, doctor, flu, GP, immunosuppressed, injection, jab, joint pain, medicine, pain, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology
I’ve been noticing a few improvements around the whole flu jab situation this year. In the previous few years I have a) struggled to book in for one because the surgery receptionists didn’t know about immunosuppression b) been disgusted at the ‘cattle market’ approach to the flu clinic, which I thought was restricted to our rural Norfolk surgery, but then found, via Helen at Pens and Needles extended to Canada too!
Here’s the way it used to work: You fight to get into the clinic in the first place, get your slot (which if I remember rightly was ‘morning’ or ‘afternoon’) and then turn up to join the queue extending all around the waiting room and out the door. You are told to be ready and waiting with your arm exposed ready for jabbing, even though the surgery is freezing because the door is permanently open due to people standing in the entry waiting for flu jabs. The receptionists ask why you were there if you looked under 70, and are puzzled when you tell them … but let you through anyway. You have now been singled out in front of hundreds of somewhat elderly people who are now all staring at you and wondering if you’re trying to con the system, so you feel great! You get to the far side of the waiting room eventually and are asked to ‘fill in this form’. The form has nothing to do with the flu jab but asks if you smoke and would like anti-smoking advice. (Apparently doing this meant they could tick a box somewhere and claim extra funding for ‘offering anti-smoking advice!) You get through to a corridor where all the doors of the rooms are open and wander about until someone says ‘in here’. You go in, and with the door still open and other bewildered patients pottering about in the corridor behind you, you’re asked, ‘Why are you having the flu jab?’ You tell them … again. They say, ‘OK’ and jab you, and then follow that up with something like, ‘Oh – hope you aren’t allergic to egg or pregnant – should have asked you first.’ Fortunately I was neither!
Here’s how it is now: You phone up and say you need a flu injection. The receptionist says fine, she’ll book you in. She goes to your record, sees you’re not elderly and says, ‘Why?’ You say, ‘Immunosuppressed.’ She says, ‘That’s fine,’ and books you in. To your astonishment you’re given an actual time, 3:10, not ‘afternoon’. Then later on in the week you find out that some of your friends have already had their jabs at the surgery and they’re doing it like a proper clinic – called up individually, closed doors, proper checking that it’s OK to give you one etc. Wow – you’re impressed!
You go for your regular methotrexate blood test and notice a big poster in the surgery window about, of all things, getting the flu jab if you are immunosuppressed! After a general rheumatology chat, taking bloods and general chitchat the nurse says, ‘Have you had your flu jab yet?’ ‘No,’ you say, ‘ but it’s booked in for next week.’ ‘Would you like it today?’ she says. After picking yourself up off the floor, rubbing your ears and asking her if she could please repeat herself because you thought she’d just offered you the flu jab today, and finding that in fact that is what she said, you say, ‘Yes please.’ After she’s sucked the appropriate amount of blood she goes and gets the flu injection. ‘I don’t know if I can roll this shirt up far enough’ you say. ‘ I wasn’t prepared for this.’ ‘That’s OK,’ says the nurse with a grin, ‘We can do it through the shirt. On second thoughts better not, the needles are so flimsy we’re having trouble just getting them through the skin!’
Aha – you think – I’m back in the land of normality now! Damn, I was enjoying this strange fantasy world where the surgery actually seems to be doing flu jabs in a sensible and logical manner.
But then you find you can roll up your shirt and in fact the needle goes in fine, if somewhat painfully!
‘Right,’ you say, ‘I suppose I’d better go and cancel my appointment for next week at the front desk.’ The nurse smiles and says breezily, ‘Oh no need – with this new database system we’ve got I can do it really easily from here,’ and she does!
Now you might think surely that wasn’t actually that much to ask – you might say, as ‘brother Penguin’ did some time ago, that your surgery has been doing this for years, but when you’ve become conditioned to being in the cattle market scenario for so many years, this just seems incredible, fantastic, too good to be true …but it’s not. It really happened.
Incredibly the nurse told me that some patients had actually complained ‘We wanted to come to the big flu clinic like last year!’ There’s no pleasing some people!
Tags: acceptance, aches, arthritis, flare, flare-up, joint pain, knee, neck pain, normality, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, stiffness, tiredness
I’ve been thinking a lot lately (although writing very little!) about what ‘acceptance’ of RA means, and also about redefining my idea of ‘normal’. I hadn’t managed, and still haven’t managed in fact, to get my thoughts into words, but I think this afternoon I came as close to ‘acceptance’ as perhaps I ever will.
As I was relaxing in the bath (sorry, probably ‘too much information, especially for those that know me!) and letting my thoughts drift along pretty randomly, I started to think about some of my friends and colleagues: one’s still coping with the aftermath of the Japanese earthquake; one’s recently widowed; one’s, to put it bluntly, losing her marbles; one’s spending this weekend picking up the pieces in her house, since large swathes of the downstairs flooring were dug up on Friday to find a leak.
Good grief, I thought – I’m bloody lucky! I have a loving (and all-round fab) husband, a terrific family (especially the nearest and dearest, including the recent addition of Mrs Mooseface), I have great friends, I enjoy my job, I have time (never enough time of course, but some time) to indulge my passions of messing around with textiles, drawing and pottering about in bits of nature, and although one could always be better off financially, the finances aren’t a complete disaster! The interesting point is that at no point during these thoughts floating over the bubbles did I consider, ‘Yes, but I do have this bloody disease to deal with, so perhaps not so lucky after all.’
It’s not as though things are going great with the RA at the moment either. I wake up every morning in pain, although it often clears for the most part within the hour. I go to sleep most nights in pain. I have pain and stiffness during every day. This is perhaps extra frustrating because for around four months between a flare in March and sometime around August, I felt as though I was pretty much fine, almost symptom free, nearly in remission. And yet, in a way, this on-and-off low-grade (for the most part) pain has just become the norm for me. It’s just another thing to put on one side and live with – and yes, I do appreciate I’m lucky that I can put it on one side at the moment, it’s not so bad that it stops me doing all those things I consider myself lucky for, but what interested me was the fact that it was so far into the normal, everyday that I didn’t even give it a thought when considering other people’s problems and drifting into comparing my life to theirs.
I think I might have once ranted that I will never ‘accept’ this disease, and don’t even mention the word ‘embrace’ in the same breath as rheumatoid arthritis, but perhaps this is acceptance, Penguin-style.
Tags: embroiderers guild, hands, RA, Rheumatoid arthritis, silk, spinning, wool, yarnscape
I said in my last post that I’d post about the spinning day, so here we go!
I had a grand day out on Saturday – as previously mentioned a friend and I (and nine other ladies) had a ‘Spinning with a Drop Spindle’ workshop with Alison from yarnscape. Like all speakers for our branch of the Embroiderers Guild, poor Alison had to do a talk on the Friday night AND a workshop all day on Saturday. We work ‘em hard! She turned out to be a fascinating and engaging speaker though, and an excellent tutor.
I discovered the whole concept of archao-linguistics at her talk – something I want to find out more about … if I ever have time. Absolutely fascinating. You can trace a technology such as glass-making or weaving around the world, seeing when it was adopted into different cultures etc., because as it’s adopted, a culture wouldn’t have a word for it so would tend to use the word of the culture or person introducing it to them… so you trace the words and the rest follows from there. Cool!
We all had a great (if frustrating) time at the workshop on Saturday. I think learning spinning is inherently frustrating – there were an awful lot of ‘aaaah’s and ‘urrghs’ early on in the day, even though Alison very wisely started us of gently with plying and unplying ready-made yarns and only moved on to fibres later. I think I know why it’s called a ‘drop spindle now – not because you let it dangle as you spin; rather because the dratted thing keeps dropping! Fortunately the groans were followed by more and more happy noises as people finally found they’d got the hang of it … or in my case ALMOST got the hang of it!
I was quite concerned, given the very changeable but fundamentally damp weather we were having, that my RA would play up and make holding the spindle and yarn and fibre (in hands, knees, mouth and any other available appendage!) Thankfully it didn’t, and neither did my friend’s – she’s the one I’ve mentioned before who also has RA but who I actually met on at a quilting group. However, Alison says we need to practice ten minutes a day if we’re ever going to master this (or words to that effect) and my hands are playing up a bit today, so it’ll be interesting to see if it makes things worse or doesn’t make any difference. One good thing is that the spindle itself (this particular one that Alison provided anyway) is very light, and one of the things we spun was silk, which is of course incredibly light, but even a handful or so of wool isn’t exactly back breaking, so I think it might be fine.
I’m sure if things were REALLY swollen it would be completely hopeless but luckily I tend not to get really swollen; just a bit on the achy side now and then … or in fact now! Off to see what effect spinning has … I hope none!
Yup, twenty minutes of spinning, one dropped spindle and two broken threads (over twisting!) later, I can safely say it’s not hurting! In fact I feel slightly better for it!
Tags: City & Guilds, embroidery
For anyone that’s been following this blog for a while, you’ll know I’ve been working towards a City & Guilds Level 3 in Embroidery – but it was touch and go for a while whether I’d complete the course because a) I got diagnosed with RA in the middle of it and b) I suddenly discovered after four years that I had to complete it in five years, so last year was a tad hectic!
Anyway, I have the certificate in my hot little flippers now – very exciting! It’s not a great certificate to look at, as certificates go. No spangley bits, no big red wax seals, no ribbon rosettes – but in spite of that it’s definitely going to go into a frame and up on the wall! It may not be something I ever use professionally, but it’s been a long, though fascinating, journey, and frankly I’m dead proud that I got there in the end!