I’m going to be a ‘Citizen Journalist’ at Future of Health 2014!

October 29, 2014 at 10:11 am | Posted in rheumatoid arthritis (RA) | 4 Comments

That’s my exciting news – so please follow me on Twitter: @Pollannpenguin – note the spelling – Pollyann not Pollyanna! What is a ‘citizen journalist?’ I hear you cry. Well, I’m not entirely sure yet and I’m not entirely sure that the Future of Health organisers are entirely sure either, but I think I can sum it up quite safely as ‘official twitterer’, or perhaps ‘official tweeter’ if you prefer. I like official twitterer better – I think it has a nice ring to it.

Now your next question, or perhaps actually your first question, is probably ‘What is Future of Health 2014’? It’s a biiiiiiiiiiiiiiiiiiiiiiiiiiig conference, held in Olympia, London, run by NHS England and University College London, with various other partners and sponsors of course, and the theme this year is all about getting above the rhetoric and the finances to try to look at person-centered healthcare – treating the patient as an individual etc. Well, if you’ve been reading this blog for any length of time you’ll know that’s something I’m ‘passionate’ about. (Although I hate the use of the word passionate in that sense, I think it’s justified here!)

How many posts have I got on here complaining about not being treated as an individual? Where do I start? Well, there was the time (actually times) my consultant pointed out, not for the first time, that I was ‘better off than most people I see in here.’ Then there were all time times the junior nurse ‘processing’ us prior to appointments made us feel like ducklings, or perhaps more like Turkeys at Christmas. There are lots of posts like this, but then that post ended fairly positively, and so did some others, like this one where I thought I’d fallen down Alice’s rabbit hole into NHS Wonderland. So, why can’t it always be like that? Well, lack of resources, long hours for nurses etc. And of course the NHS is broke.

So, I’m really looking forward to seeing if Future of Health 2014 can get beyond the rhetoric and beyond the finances and into the heads of people who say ‘Oh, I see worse than you all the time’ or show a complete lack of interest in their patients, or can’t be bothered to read the notes, or employ people who can’t actually speak or understand English well enough to help, and actually change things. I can’t wait!

Oh, and as an added bonus Ben Goldacre of Bad Science fame is talking, so that should be good too!

Tweeting Penguin

October 25, 2014 at 8:29 am | Posted in rheumatoid arthritis (RA) | 1 Comment

Well, at long last I have been dragged, kicking and screaming into the 21st century and I’m tweeting. Now, as soon as I can work out how to add a widget to my sidebar to put tweets in, you’ll be able to see them.

There’s quite an exciting reason why I’ve started tweeting – but more on that soon!

Please note, I’m @Pollyannpenguin – that’s POLLYANN NOT POLLYANNA – spot the subtle difference. That’s because Twitter only allows 15 characters for its usernames – should have gone for Polly_Penguin but didn’t think of it in time!

A bit of an update – I can’t believe it’s been so long!

October 15, 2014 at 1:35 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 4 Comments
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I can’t believe I haven’t posted since June. I wish I could say that that’s because I had nothing, RA-wise, to post about, but that wouldn’t be strictly true. In fact throughout June, July and August I probably did have ALMOST nothing to post about, but, although I’ve kept off those dratted antiinflmmatatories, things aren’t quite so hot now.

It’s just little niggly things at the moment – niggly knees mostly, as it always is with me, plus waking up in the night and finding my right-hand index finger is very stiff and very painful. I have a horrible feeling this relates to my increase in crocheting lately, and I’m wondering if I’ll be able to complete my Diploma in Crochet … although thankfully there’s no time limit so if it takes me a week to crochet a 4″ square, so be it!

And talking of crafts, I’ve just been to the Knitting and Stitching Show at Alexander Palace – a 3.5 hour journey there, mostly by coach, a 4 hour journey back (due to the coach almost breaking down but managing to limp to our drop-off point in the end!) and a loooong day browsing the exhibitions (so-so), trade stands (fabulous yearly treat for a rural type with few local craft shops!) and enjoying a workshop too (Dorset button making). We went on the Friday and it knocked me FLAT for the rest of the weekend but it was worth it!

I also had my hospital appointment not long ago. To my astonishment it went very well – they called us in individually, so again we didn’t have to line up like ducklings behind the mother-duck nurse, and there was a new rheumy nurse there (well, new to me, and young) who was absolutely delightful – she hasn’t had the soft, caring side knocked out of her by working too long for too little and too many hours at a time … yet. She was very sympathetic and very helpful about the knees, which were playing up at the time, although more from the medical (go on, have them drained, it’s not that bad – hah, like she’d know!) side than the practical ‘help yourself’ side of exercises, cold compresses etc. And thereby lies, in my non-expert opinion, one of the biggest problems with any giant organisation such as the NHS. It’s inevitable that everyone has their own specialties, but they do tend to get siloed. She didn’t offer me physio – but then again … I didn’t ask. In all honesty I didn’t feel I needed it, and perhaps neither did she! I know how to manage the low-level pain now – sometimes I may need reminding, being a dopey penguin, but I do know!

And that lack of ‘joined up thinking’ leads to the next thing – I got a letter recently asking me to ring the surgery to discuss ‘some blood results from the hospital’. Slightly worrying that – especially as it arrived on a Thursday, I didn’t get it until Thursday night and I was off to London on Friday, so couldn’t ring until Monday. Anyway, I rang on Monday. ‘Oh’ says the doc. ‘They want us to check your cholesterol risk.’ And ‘quite right too’ I hear you say. ‘You’re overweight and you should do something about it and they’re right to be vigilant.’ Well, yes, but here’s the thing … the surgery themselves had just checked my cholesterol about three weeks before and established that I was low risk.

If the nurse at the hospital had asked me about it, instead of sending me off for bloods and not even telling me she was checking that, I could have said, ‘They’ve just done that at the surgery. This is my level, I’m apparently low risk.’ Instead, lovely as she was, she wasted the following resources:

  • A blood sucker (aka phlebotomist)
  • The lab doing the work on the cholesterol
  • The hospital secretary
  • The surgery secretary who sent out the letter
  • The GP who had to call me back and discuss what we’d discussed three weeks before

‘Joined up thinking’ is no longer the buzz phrase of the day, and it sadly didn’t work when it was, but a little bit more of it would be a wonderful thing.

On mended knee

June 22, 2014 at 8:57 pm | Posted in Me, rheumatoid arthritis (RA) | 3 Comments
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Eye Church from the Pennings Nature Reserve

Eye Church from the Pennings Nature Reserve

Thanks for all the comments. Well, we made it back today, and successfully collected the fabric. (If you have no idea what I’m talking about then you’ll need to read the previous post!) Run4Joy – not sure about ‘spry’, the knee isn’t perfect … in fact neither knee is as good as it was a couple of days ago, but both are much, much better than yesterday!

Maggie, good point! We made it back and this time we got to the nature reserve – and very lovely (and flat) it was too. You can’t see in the picture above but between us and the church there’s a lovely river (the River Dove), teaming with damselflies and dragonflies. Most of the (very small) reserve is a wild flower meadow, so a jolly nice place to visit in the summer!

Carla, I’m sure you’re right – I had been overdoing it, so we had a very short and leisurely walk around the reserve and then headed back home and put our feet up. Poor Hubby, having done all the driving two days running … not to mention the drive up to the coast on Friday night for a walk around Cromer, Blakeney and Wells (did I mention I might have overdone it lately?), was more in need of a feet up afternoon than I was!

O’oh …

June 21, 2014 at 8:38 pm | Posted in rheumatoid arthritis (RA) | 5 Comments

Well, I’ve had no problem at all with giving up the anti-inflammatories … everything’s been fine – until this afternoon. Hubby and I decided to have a trip to the very pretty little town of Eye in Suffolk – about an hour away from home. It’s this pretty:Image

And if you think it looks a bit like Toytown, that’s because it’s taken from the top of the castle mott. That’s this:

IMG_3055

Quite a long way up … and I walked all the way up there, lots of steps … and down again, lots more steps, and I was fine.

And then we found a lovely little restaurant, Lindsay House, which I highly recommend if you ever find yourself in Eye on a Thursday to Sunday (they’re not open the other days) and had a first-class lunch … and I was fine.

And then … while sipping the surprisingly good decaf coffee (surprising because decaf coffee isn’t normally that good), my right knee started to twinge. And then it started to do more than twinge … which was a shame because we were planning to investigate the nearby nature reserve after lunch and instead we went back home. ‘Let’s see how it is on the way to the car park’ I said … but alas, it wasn’t good.

So I’ve managed not quite two weeks I think without anti-inflams, but I had to have one today. The good news is that the knee’s not been too bad since I got home.

I suspect going up the castle hill was a step (or two) too far! Hopefully I’ll be OK tomorrow … There’s a good chance we’re going back to Eye tomorrow. (It was nice but not THAT nice. However, I bought some rather unusual fabric in a shop there, and managed to leave it behind when we left the restaurant. DOH!)

 

 

Cutting back on the tabs!

June 13, 2014 at 10:27 am | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 9 Comments
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You may have noticed I haven’t actually said anything much about my RA for a while … well that’s because it’s not really affecting me in a big way, and hasn’t been for a while. And yes – I do appreciate how bloomin’ lucky I am!

I saw my consultant the other day and for once we were in agreement – things are going well both from his point of view (bloods and 2-second examination) and mine (how I actually feel). These two things rarely combine but this time they did, and what’s more, six months ago when I saw the nurse things were going well too, so we’ve made the decision to cut back on the tablets.

I must say I felt awfully brave doing that … still do actually, it’s scary how dependent one gets on the comfort of knowing that if you keep taking the tablets things are mostly OK. It’s only the anti-inflammatories that I’m cutting back on at the moment, and the idea is that if that goes OK I’ll step down my methotrexate next time I see him. In fact, I’ve cut out the anti-inflammatories altogether for five days so far and things are going well. Apart from the odd twinges in my bad knee and occasional mild stiffness and achiness if I wake up after a cold night, I’ve had very little indication that they were making any difference. Unlike the methotraxate, there was no build-up with the anti-inflams I was taking, so the good news is that I can cut them out for the moment but if I have a flare, or just a bad, achy day, I can take one whenever I need to.

Of course we’ve had five days of glorious sunshine and DRYNESS – which I’m convinced makes a difference, so we’ll have to wait and see how things go when that stops – and given it’s the weekend that will probably stop tomorrow! Watch this space! I’m really hopeful though that things will carry on going well and I can reduce the methotrexate in six months’ time!

World Autoimmune Arthritis Day

April 21, 2014 at 8:16 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 4 Comments
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waad

World Autoimmune Arthritis Day, a 47 hour ONLINE Virtual Convention that starts at 6am ET/USA (11am UK) May 19th and ends at 5am ET/USA (10am UK) May 21st.

Anyone interested in finding out more about autoimmune arthritises can join in, but you MUST register. If you want to attend the live events it’s $5 before May 19th or $7 ‘on the door’ (it’s all virtual of course!).HOWEVER you can also register for free if you just want access to the library of info and all the free resources, which will be downloadable until May 31st.

For info on all the great live events taking place, go to the registration page here.

There are some sick people out there – and I’m not talking about the ones with RA!

March 25, 2014 at 10:00 am | Posted in rheumatoid arthritis (RA) | 3 Comments
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I got this in my email yesterday morning, purporting to be from NICE (National Institute for Health and Care Excellence). 

 

Dear [email address removed] We have been sent a sample of your blood analysis for further research. During the complete blood count (CBC) we have revealed that white blood cells is very low, and unfortunately we have a suspicion of a cancer. Wite Blood cells 1200 Low Hemoglobin 12 Normal Platelets 19000 Low We suggest you to print out your CBC test results and interpretations in attachment below and visit your family doctor as soon as possible Sincerely,Dr. Avery Ernie National Institute for Health and Care Excellence

My first instinct was to laugh – for so many reasons. Honestly, can’t these spammers do their research properly? NICE doesn’t stand for that at all – and your average doctor can probably spell ‘white’ too. Then there’s the fact that NICE don’t do any research or analyse any samples. (All they are there for, as far as I can see, is to decide if drugs are too expensive for patients to benefit from!) Not to mention the fact that blood samples don’t go whizzing around the country for ‘further research’ without my permission, and when they do, since I’m part of an epidemiological study, they are anonymised. 

However, my second reaction was absolute fury – I presume the ‘attached’ was some sort of virus or other nasty, so what if this had gone to some really vulnerable person, not overly familiar with silly spamming tactics and actually awaiting the results of blood tests for possible cancer? The last thing someone in that situation needs is some moron to cause their computer to crash or steal their bank details or whatever other nasty things these people do these days!

I was reading this morning about medieval punishment practices;  a seller of off wine for instance would be hauled to the pillory, forced to drink a draft of his off wine and have the rest poured over his head before being locked in to the pillory  – most unpleasant – but too good for these people, I can’t help thinking! I shall be daydreaming of suitable ways to punish these people if they’re ever caught! <evil grin>

 

A day (or two) in my life with RA

March 23, 2014 at 9:58 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 19 Comments
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This post will be part of the Word Autoimmune Arthritis Day Blog Carnival. WAAD is May 19th 2014 but you can sign up for it now over at the site. This year’s theme is “A Day in the Life of an Autoimmune Arthritis Patient.” I hope I’m not cheating, but I’m going to describe two days – one just post diagnosis and one post-“control” where I am now!

4:00 am A day in March 2008

Wake up hurting – everything’s hurting. My neck and shoulders are very stiff, my back aches, my feet are killing me, one arm is numb and the other has pins and needles going from shoulder to finger-tips – but oddly only the little and ring finger.

Worry – a lot. Come on, I was diagnosed as ‘likely’ are in November last year, and definitely in February  – so how come it’s still not sorted. OMG, what if it never does get sorted? Am I going to end up a wheelchair? Will I cope? Will hubby cope?

And where the heck is that physio appointment they promised me months ago?

4:00 am A day in March 2014

Zzzzzzzzzzzzzzz…..

7:00 am March 2008

Wake up feeling completely un-refreshed and cursing myself for having spent an hour in the middle of the night worrying instead of sleeping. Worry some more as I creak my way gradually out of bed, gently testing bits of me to see how mobile they are. The relief of shaking off the pins and needles and then plunging my hands into warm water is enormous.

7:00 am March 2014

Wake up, blinking the ‘sleep’ out of my eyes. Slight stiffness. Hubby draws the curtains and says, ‘How’s the Penguin?’ ‘Stiff and achy,’ I reply, but then I realise that this is nothing to how it felt a few years ago, really NOTHING, and instantly feel a bit better.

7:30 am March 2008

Take a hydroxychloroquine and a diclofenac and wonder if they’re helping or not. I know I have to wait another couple of months to find out. It’s frustrating!

7:30 am March 2014

Take a hydroxychloroquine and an ‘arcoxia’ cox-2 inhibitor. I had to stop taking the diclofenac eventually after a nasty stomach upset – the arcoxia are supposed to much worse for the stomach, but so far don’t seem to be worrying mine!

8:00 am March 2008

The stiffness is just starting to think about wearing off. My left knee is very swollen and I hobble out to my car using a stick, to head off to work. I’m wondering how I’ll make it through a whole day!

8:00 am March 2014

Stiffness? What stiffness? Did I say I was stiff and achy this morning? Heavens! I’d forgotten. That wore off in about ten minutes.

9:00 am March 2008

Work  – chat to colleague – drink strong coffee – work some more. Try to remember to MOVE because otherwise I freeze into place and struggle to get out of my chair when I need to later.

9:00 am March 2014

Work – chat to colleagues – drink decaffeinated coffee (this change has nothing to do with the RA, but I have rosacea and the symptoms of that are drastically decreased by drinking only decaf coffee rather than ‘caffeinated’), work some more. Move when I want to – it’s not a particular issue any more.

12:00 pm March 2008

Strewth I’m stiff – I got a bit too involved in some interesting work and haven’t moved out of my chair for an hour. Now I’m in the embarrassing situation of needing a ‘comfort break’ rather urgently and thinking it’s going to take me five minutes to un-stiffen enough to get there!

Time for the next diclofenac. Oh no! I’ve left them at home! Mad dash home in the car to get one, and then back to work.

12:00 pm March 2014

Lunch time – get up, stretch a bit, possibly say ‘creak’, which makes my ‘Junior Penguin’ colleagues chuckle, but really I’m quite mobile. Grab a bit of lunch and go for a mile walk – I know it should be longer … and faster … but it’s about what I can manage comfortably in the time I can spare and my knees aren’t right, though much better than they were a few years ago.

Happily no lunch-time tablets any-more – as life-style changes go, this one has had a surprising amount of impact ! I’d really hate to have to go back to trying to remember lunch-time tablets again!

3:00 pm March 2008

Really wondering if I can last until five. If I was on my own I’d be out of here – but I’ve got an employee now and I feel I should set a good example so I stay.

3:00 pm March 2014

Wow – I love this job – time for a bit of a coffee break and then back to some really interesting transcription about language usage … followed, for a bit of a change, by some transcription about sheep diseases! Variety – that’s what I love!

5:00 pm March 2008

‘I’m tired and I wanna go home’ but we’re really busy and I’ve promised someone to get some work back to them this week – I’d better stay a bit longer, even though I feel soooooo tired and achy!

5:00 pm March 2014

I’m outa here – life’s too short! My way of working these days is to delegate or subcontract what I can’t fit in between 8am and 5pm Monday to Friday. I’ve got about 15 hobbies (and one hubby… and friends) and I want time to enjoy them all… especially as, let’s be honest, I don’t know how long I’ll be able to carry on with some of my hobbies, especially those involving a lot of walking or using my hands! I don’t feel negative about it though – things are going well at the moment and I’m making the most of my free time!

6:00 pm March 2008

Still at work.

6:00 pm March 2014

Just leaving a friend’s house. I’ve popped round for a post-work chat and coffee. Feeling pretty fine.

7:30 pm March 2008

Just about manage to get some supper on the table. I only arrived home half an hour ago so it’s ‘oven fish and chips’. 7.5g of methotrexate tonight, with another diclofenac, another hydroxychloroquine and a lansoprazole (stomach settling tablet).

7:30 pm March 2014

We’ve eaten already – I like to eat early and have the evening to play in – especially as I’m usually in bed by 9:00 pm these days – I find an early night makes a huge difference to my general well-being.

Tablets were 17.5g of methotrexate (yeah, it’s gone up a lot but I don’t care – it’s working, and there’s still room for it to go up a bit more … although I do worry sometimes about what happens if/when I’m up to 25g and there’s nowhere else to go  because my symptoms are too mild to get anti-TNFs etc. on the NHS!), and another hydroxychloroquine and a lansoprazole.

9:00 pm March 2008

Getting ready for bed – head still buzzing with what’s happening at work, worries about health, worries that I’m not finding time to do the things I love and speak to the people I love, worries, worries, worries. Heaven knows when I’ll get to sleep. Read a book for a bit to try to take my mind of it.

9:00 pm March 2014

In bed sipping a cup of decaf coffee that hubby’s just made me. Feeling satisfied that I’ve done a bit of Spanish ‘homework’ and managed quite a chunk of embroidery and a bit of crochet this evening, while watching an interesting documentary on the telly and discussing it with hubby later in some depth. Reading a good book on my iPad and feeling very relaxed.

10:00 pm March 2008

Oh no – I really don’t feel sleepy. I’ll read some more and try to relax. ‘Come on Penguin – light’s out’ says Hubby. ‘Just another five minutes’ I say, knowing he’ll be asleep in four and I can carry on reading!

10:00 pm March 2014

Zzzzzzzzzzzzzzzzzz…..

11:00 pm March 2008

Better put the light out. Toss, turn, toss, turn.

11:00 pm March 2014

Zzzzzzzzzzzzzzzzzz…

1:00 am March 2008

At last  … zzzzzzzzzzzz…..

1:00 am March 2014

Zzzzzzzzzzzz…

2:00 am March 2014

Wake up – stiff, in pain, pins and needles – wriggle about until I feel vaguely comfortable, lie awake for 20 minutes and eventually drift off to sleep.

2:00 am March 2014

Wake up – roll over – zzzzzzzzzzz…………….

And so another day starts in the life of Pollyanna Penguin …

My Day with RA

March 10, 2014 at 8:27 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 1 Comment
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This post will be part of the Word Autoimmune Arthritis Day Blog Carnival. WAAD is May 19th 2014 but you can sign up for it now over at the site. This year’s theme is “A Day in the Life of an Autoimmune Arthritis Patient.” My previous post on this is here.

As I said in my previous post, these days RA doesn’t have such a huge impact on my life. In fact I almost feel a fraud posting about it, but there are some little things, and some equally small hints and tips on coping with them, that I can post about.

Other than making sure I take my medication really regularly, I don’t have to do an awful lot to manage my RA but one of the most important things I do is wear orthotic insoles in my shoes. It certainly helps being married to a chiropodist! These insoles have made a massive difference to me over the years. They’re now just a part of life, but if I do have occasion to wear ‘fancy’ shoes or, as I did yesterday, wander downstairs with bare feet without thinking, I soon know about it – and not in a good way! I had painful feet for years before diagnosis whenever I spent a bit of time walking about, and I just assumed it was the pain everyone had when they said ‘Ooh, it’s good to take the weight off your feet!’ It didn’t dawn on me for ages that when I took the weight off my feet they still hurt, and other people’s didn’t!

Another little tip is warm water – warm water is a wonderful thing if your hands are stiff first thing in the morning! I rarely get significant morning stiffness but if I do, plunging my hands into a sink full of lovely warm water really does help. (Hubby will read this and suggest I should do more washing up, I dare say!)

The other major effect RA has on me, and the most difficult one of all to get through to people who don’t understand the disease (including family, doctors, family who are doctors …) is the fatigue! This really is a big problem and the only way I can deal with it is to pace myself and try to keep to a boring routine of early nights and early mornings. (Obviously if late mornings are an option for you, that’s fine – they aren’t for me as I work full time.) People always pull faces and think I’m making excuses when I’m being a party pooper at 9 pm … and maybe they’re right as I’ve never been a fan of parties … but really, an early night and a good sleep makes all the difference to me.

The final thing is flares – even though my arthritis is mild and controlled I still get flares. They’re a fact of life. The hardest thing is to remind myself during a flare that it may seem like a dark tunnel but there IS light at the end of it. It’s ridiculous – every time I have a flare I feel as though THIS IS IT and things will never be right again. After seven years since diagnosis and quite a few flares you’d think I’d be over this but I’ve spoken to other RA sufferers and people who have other diseases that also flare and die down, and many seem to go through the same thing. It’s not sensible but I haven’t yet found a way to avoid it! So if anyone would like to offer me a hint or tip on this, it would be appreciated!  :-)

 

 

 

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