The joys of a winter routine hospital appointment

December 23, 2011 at 9:03 pm | Posted in Me, rheumatoid arthritis (RA) | 1 Comment
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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.

Warm, spicy sauna

December 14, 2011 at 10:18 pm | Posted in Me, rheumatoid arthritis (RA) | 2 Comments
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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!)

Split personality

November 21, 2011 at 9:44 am | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, fibromyalgia, rheumatoid arthritis (RA) | 5 Comments
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Well more split Penguin really – my right side is ready to take on the world this morning, but my left side just wants to go back to bed with a hot-water-bottle (or perhaps Enormous Cat on hot-water-bottle duty). This is not my usual pattern – usually I have, for instance, a bad knee and a worse knee, or a pair of bad shoulders, but this morning everything on the right is fine but my left hand, elbow, shoulder and knee are all stiff and painful!

I rather suspect that this has as much to do with fibromyalgia than it does with RA, because although the knee and elbow feel joint-related the shoulder is definitely muscular … well, when I say definitely it’s actually hard to be sure I find, but it doesn’t feel like the usual rheumatoid arthritis pain. I’ve had a few problems in the last few days with it, having foolishly swung round to grab something behind me on Saturday and then found myself curled up in a ball on my chair going, ‘Ow, ooops, I really shouldn’t have done that’.* Unbelievably I then did exactly the same thing twice on Sunday! It’s such a dumb thing to do for someone who knows damn well they get problems in neck and shoulders! I blame the fact that they’d felt so good lately that I’ve been less aware of having to be careful … which I suppose is something I really can’t complain about.

Oh well, I have a mountain of work to get through today thanks to the over-enthusiasm of a colleague on Thursday who, forgetting I was on my own for the first half of the week, may have bitten off more work than we can chew, so I’m going to have to let the right side rule!

 

*This is the expurgated version

There’s no telling some people (Also ICK!)

November 5, 2011 at 9:27 am | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, rheumatoid arthritis (RA) | 2 Comments
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I met up with a friend yesterday who I haven’t seen for ages, in spite of the fact that we work in the same tiny town. It was great to see her but I was somewhat dismayed when she asked me about my arthritis and then told me that her husband seemed to be suffering from what appear to be RA symptoms too.

‘One of his fingers is permanently hooked now,’ she said, ‘and sometimes when he goes to open a jar or something he hand locks around it and I have to force the fingers open one by one. I hate doing that, it’s gross.’

My immediate reaction was something like ‘Aaaaaaaaaaaaarrrrrggghghhhggh!’ This was partly for the grossness and partly because you MUSTN’T do that. ‘Every time you force his hand open you’re damaging the joints more!’ I nearly screamed.

‘Well,’ says she with a shrug, ‘what else can we do?’

‘What treatment is he on for it?’

‘Oh he isn’t on any treatment. He’s not been to the doctor about it.’

Did I mention Aaaaaaaaaaaaarrrrrggghghhhggh?

Well … erm … that might be your answer about what else you can do about it then! Now I know some people don’t want to go on treatment and have some success with alternative therapy or diet, and the very best of luck to them, but he’s not doing that either. He’s just ignoring it and waiting for it to go away. What makes it worse is he has a very active, physical job and he really NEEDS to be able to do this stuff.

On reflection, perhaps that’s why he’s not going to the doctor – he’s terrified of being told that he shouldn’t/can’t carry on working, so he’s just trying to ignore it. I can kind of sympathise with that … but he’s still crazy if you ask me!

Tips on coping with RA

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

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

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

Coffee on the knee

March 3, 2011 at 9:59 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | Leave a comment
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We’re a nervy (or at least reticent) bunch when it comes to telling friends and colleagues about our RA, and often for very good reason! There’s probably a post born every minute about this. Two good recent ones are from Squirrel and Laurie at ‘Frozen Woman’. I suppose it’s partly that we’ve all had bad reactions from someone, somewhere at some point, and it’s once bitten, twice shy, but also, as Squirrel mentioned in her post, that it’s really hard to get people to understand that you can be fine one minute and flaring the next … and then fine again soon after, if you’re lucky.

What one doesn’t often hear is what a good laugh it can be trying to explain things to folks wot don’t know.

Well today I had to explain to the ‘temp boss’ (‘the boss’, who knows all about the whole RA thing, being on maternity leave) that she was on permanent coffee duty today because I couldn’t get up and down the stairs terribly easily. Now I was probably muttering a bit because this whole RA thing shouldn’t make me feel embarrassed, but it does, and I was feeling guilty (another dumb and pointless emotion that shouldn’t be related to being ill!) about not being able to get my share of coffees, and temp boss’s hearing isn’t as acute as it might be, and she was probably only half listening because her mind was on getting coffees, but anyway, somehow my saying, ‘I won’t be able to get the coffees today because I’ve got a bad knee’ followed by an attempted explanation of flaring etc. got translated in her mind as ‘I can’t drink coffee today because I’ve got a bad knee’ and the pair of us ended up in fits of giggles at her vision of all this coffee pooling somehow in my knee and causing it to swell up.

Well, laughter is definitely therapeutic, so for once telling a colleague about RA turned out to be more therapeutic than painful! I think the pair of us will be referring to any future knee flares as ‘coffee on the knee’ from now on!

Giving myself a kick up the …

February 1, 2011 at 10:10 am | Posted in rheumatoid arthritis (RA) | 1 Comment
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I’m feeling a lot better at the moment. Exercise obviously is the cure for or ills! (Well perhaps not, but I think it might have helped a bit! Perhaps it’s browsing books that made me feel better!) Anyway, in spite of feeling better physically I woke up yesterday with a major ‘Monday morning feeling’ and a distinct grump on about the fact that we’d had too really gloomy days over the weekend and yet last Friday and this Monday (when I had to work, of course, or in Friday’s case would have been working if I hadn’t been at home with my head under a pillow trying to shift the latest migraine), we had gloriously sunny, spring days.

Then I decided this was not the positive thinking penguin I wanted to be! So I ‘reframed’ and started to think, ‘Hey, at least I can glance out of the window and see blue sky and the promise of spring, even if I do have to work.’  Then at lunchtime I managed to reframe, ‘Oh heck, we’ve gone a bit quiet at work, will we have enough to keep us going?’  to ‘Ooh, goodie, we’re a bit quiet. I’ve got time to go for a nice walk at lunch time and enjoy the sunshine.’ And I did. I only went up and down the high street, popped into a few charity shops and had a browse (got seriously tempted by a knitting machine, but that’s another story)  but mostly just wandered up and down soaking up the sun (in a well wrapped kind of way, given that it’s still February!) but I felt so much better for it, and so much better for seeing the aconites starting to flower, bright yellow splashes of colour that are definitely the heralds of spring round here! (It was the primroses where I used to live, in Devon, but here it’s the snowdrops and the aconites.) Anyway, I’m feeling much better for it – and hoping that today will bring a bit more sunshine and another chance for a walk … although my fears about lack of work were groundless, as a load more has come in! Even so, I shall jolly well make time for a walk at lunch time!

Migraines again!

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

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

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

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

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

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

A morning of minor frustrations

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

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

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

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

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

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

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.

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