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.

So much to post about, so little time

May 13, 2010 at 1:09 pm | Posted in rheumatoid arthritis (RA) | 6 Comments
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It’s been ages since I posted! First of all I was on holiday (fab) and then I was back (less fab) with intrays (both virtual and paper) bulging at the seems, even though ‘the boss’ was doing a sterling job of dealing with stuff while I was away. My stress levels weren’t helped by the tax office sending out wrong info about maternity pay just when I needed to look into it, as ‘the boss’ is nearly half way to having a baby! Their calculator told me I could claim back about 10% of what I paid out in statutory maternity pay – which worried me a bit, since I’d thought I could claim back 100%. Turns out I CAN claim back 100% – but I had a stressful week or two before I found that out. Then they decided to keep me on my toes by telling me I’d not paid April’s PAYE, so I had to waste time phoning them up, only to be told ‘Oh sorry – the computer is accidentally sending out non-payment notices every time someone sends in an end of year tax statement.’ Marvellous!! Work itself has been pretty stressful too – but at least busy, which as usual I have to keep reminding myself is GOOD THING!

On top of all this I’ve recently heard that a good, and local, friend of mine has just been diagnosed with breast cancer. She also has RA! As my friend Weeny would say, ‘You really must stop going for those buy one, get one free offers!’ Seriously though – you’d think RA would be enough to cope with!

As to the good ol’ RA, it’s MOSTLY been behaving itself. I thought I was in for a holiday flare as I watched my hands getting redder and redder and more and more swollen as hubby drove us down to Dorset, but a few hours after we had reached our friend’s house, where we were to stay the week, they’d settled right back down. Perhaps my body suddenly went ‘Hey, chill out penguin – you’re on holiday!’ Had a blipette (florette, flarette?) this week, probably due to finding out about my friend’s cancer, but again it hasn’t materialised into a flare, thank goodness.

I’ve also just had a thyroid test (again) because I’m feeling tired and FROZEN all the time. While this MIGHT have something to do with the fact it’s bloody cold and we’re getting early April weather in mid May, I’m frozen even when it’s quite warm, so I think there’s more to it than that. The only time I’m really warm, in fact, is when I’m having a hot flush. Imagine the fun of dressing for a day of being 90% frozen and 10% boiled – it’s kinda tricky!

I think there’s about six things that could be expanded on in separate posts here, not to mention an interesting bit of info about blood tests that Maggie sent me before I went away and that I’m still planning to blog on at some point. But meanwhile it’s nose back to the grindstone – a rather grim mixture of interviews on child abuse and prostitution, and a disciplinary hearing! Oh well – it can’t be chocolate every week – last week was mostly all about chocolate, so I suppose I shouldn’t complain!

World Arthritis Day – Let’s Work Together!

October 12, 2009 at 12:01 am | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, rheumatoid arthritis (RA) | 1 Comment
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It’s World Arthritis Day and this year’s theme is ‘Let’s Work Together!’ It’s got me thinking about how lucky I am to still be in work considering I’ve got this dratted disease/illness/condition, whatever you want to call it.

I’m very grateful that I can still work, in spite of the R.A. It’s been a difficult road to travel, but I feel not nearly so difficult as for those in employment. Yes, it’s “mild R.A.” but when my symptoms are bad it doesn’t feel mild to me! As a self-employed person I don’t have to worry about breaking the news to the boss, explaining why I can’t play golf with the company, or put up with silly comments or lack of understanding from colleagues. I only have one colleague and she’s very understanding … if she’s not then she does a good job of hiding it, since I’m her boss (at least officially – we suffer from role reversal now and then).

There has been some research, sited in the excellent book on Living a Full Life With Rheumatoid Arthritis by Jasmine Jenkins (a delightful lady whom I had the pleasure to meet in Barcelona – Gosh – who’d have thought you could name-drop in the world of rheumatoid arthritis?), that suggests that self-employed people are likely to remain in work longer than those who are employed. If I remember rightly, since I can’t lay my hands on the book right now, it was suggested that this is due to difficulties with employers. On a bad day I wonder if it’s more to do with desperation – there’s no going off sick and still being paid by the company! On a normal day though I’m grateful that I can take small amounts of time off here and there to cope with a flare, and that I have been able to cut my hours back to normal full-time hours from slightly in sane morning and evening and weekend hours that I used to work, without having to justify myself to anyone except myself.

It would be good if World Arthritis Day, and indeed the My Day for RA site, brought some real understanding of rheumatoid arthritis to those who don’t have it but who have friends, family or colleagues who do, to lighten the load of those people in employment who have to put up with R.A. on top of all the usual frustrations of a job!

Holiday to Gloucester

May 21, 2009 at 9:37 pm | Posted in rheumatoid arthritis (RA) | Leave a comment
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Got back from our short holiday this week – five days in Gloucester, very nice apart from the hotel. There is NO excuse in this age of cafetieres and even good instant coffees to massacre a coffee the way they did at breakfast! And as for the ‘friendly welcoming staff’ … well ‘not’ springs to mind. So if you ever find yourself in Gloucester, UK, don’t go to the Edward Hotel.

Anyway, whinge over, apart from that we had a lovely time – no television (I mean there was one, we just didn’t watch it), fun days out, lots of reading and relaxing, only one mildly panicked phone call from my colleague during the whole week, superb food … if you ever find yourself in Gloucester UK DO go to Bearlands restaurant and wine bar (excellent set menu for £15 a head … insanely cheap for what you got. Of course they’re hoping you’ll have a bit to drink … at £4.50 a glass!) and Topoly’s Italian Restaurant.

So all in all a jolly good break … Gloucester itself was a tad run down, due to a combination of the recession and terrible floods two years ago – but the surrounding area is lovely and there’s loads of places to visit.

The RA behaved itself for the first few days and then gradually built up, and my feet have yet to recover from all the walking we did, but it was worth it! Mind you, it was about a quarter of the walking I would have done two years ago, but I try not to dwell on that.

As to coming back to work this week … well, I’d rather not think about that right now! ;o)

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