‘More than my RA’ – a UK body-image intervention study looking for participants

May 5, 2017 at 1:04 pm | Posted in rheumatoid arthritis (RA) | Leave a comment

Interestingly, just after my good friend Carla’s post about a written intervention study, I saw an invitation to a different written intervention study on Facebook. The details (not on Facebook) can be found here. It sounds like a rather gentler version than the ‘write about trauma’ study that ‘Galloping Grandma’ posted about that is reposted in Carla’s blog  … or at least I hope it is, because I’ve signed up!

This one is about improving your own body image and it’s open to any women over 18 with RA who are based in the UK. It’s some short written exercises (anonymous so that the researchers don’t know who’s written what) and some questionnaires so not a great deal of time required. The exercises are designed to help improve your body image apparently … I try not to think about my body image, which is probably an indication that it needs improving!

Obviously I won’t be posting my thoughts about it … at least until after it’s completely over, for fear of biasing someone else, but I really hope there’s someone out there who’s eligible and will take part – anything aiming to help people with RA I’m happy to have a go … well, OK, not anything … no custard pies in the face, no running marathons … but a few minutes out of a few days … yeah, I’m happy to give it a try!

If you are interested, or have any questions, please contact us Jessica.Alleva@uwe.ac.uk.

Woohoo for Pilates… and other news!

April 22, 2017 at 5:39 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, fibromyalgia, joint pai, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 8 Comments
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I have just realised I haven’t posted on this blog THIS YEAR! Shocking neglect! Part of the reason is that I haven’t been having much in the way of RA problems – things haven’t been perfect but I’ve felt generally much better since Christmas than I have for quite a while … until a couple of weeks ago, when I started to get morning stiffness (I’ve had NONE most of the year) and some pain.

Now various things could have been the (or part of the) root cause of this. We were on holiday three weeks ago (lovely time!) and that meant I had much more caffeine and much more gluten than I normally would – but I’ve been relatively good since I got back and it was only a week away. Then holiday also upset the routine and therefore the sleep, and sleeping badly always adds to the aches and pains.

However, one big thing is that I have been having weekly Pilates sessions since November (I think, maybe October, maybe early December!) and felt a lot better after the first few of those … and due to my holiday and then Easter I’ve had three weeks without a Pilates session. I suspect this has FAR more to do with the increase in pain than anything else, although of course I can’t prove it.

Anyway, I had my first session for three weeks yesterday and felt MUCH better after it … although I still had a lot of morning stiffness and pain today. Hopefully after another session or two I’ll be back on track.

In the meantime, a really excellent new NRAS magazine arrived last week – one of the many interesting articles hinted at a link between fibromyalgia and sleep (although that wasn’t what the article was actually about), and that is something I’ve been thinking for quite a while so it’s interesting to see the medics sniffing round the same idea.

Another interesting article discusses (briefly) a study carried out in San Francisco on why some people don’t respond well to anti-TNFs. Patients who have a higher proportion of an inflammatory protein called type 1 interferon beta, compared to type one interferon alpha, respond less well. Also monocytes (a type of white blood cell) behaved differently in different people. This could lead further down the interesting path of being able to personalise treatment more by understanding a patient’s personal biology, but also perhaps (my suggestion not the article’s) indicates another thing that’s been being suggested for a long time by a lot of people … that RA is not just one disease but many lumped together under the same label.

There are also various grim reminders that being overweight can cause further problems for people with RA so I need to get back on track with the diet, which has gone to pot a bit since the holiday! I did manage to mostly avoid chocolate at Easter … but then went and entered a raffle on Easter Monday with a table full of all sorts of prizes and got a call the other day to say I’d won … a chocolate bunny! Oops. Oh well, I thought, perhaps it’ll just be a little one. I picked it up today. It is labelled ‘Giant Chocolate Bunny’.  Perhaps I’ll do the sensible thing and give it away …  🙂

On the Third Day Before Christmas…

December 23, 2016 at 5:16 pm | Posted in Me, rheumatoid arthritis, rheumatoid arthritis (RA) | 10 Comments
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On the third day ‘fore Christmas my Arthur gave to me, a bad pain in my left knee.

On the second day ‘fore Christmas my Arthur gave to me, two swollen ankles, and a bad pain in my left knee.

Actually, to be strictly accurate, yesterday it was a bad right ankle, but that didn’t scan! Today’s verse is completely accurate, unfortunately. I had recovered nicely from the last flare after a few days, only to go down with a short, sharp and rather nasty stomach upset that put me in bed for a couple of days. This week I’ve been mostly OK, if a little stressed at work, and then suddenly on Wednesday everything at work went right, and I was unexpectedly able to finish for Christmas that afternoon – so hubby and I had a day out at Wells-Next-the-Sea on the North Norfolk coast. It was a glorious, sunny day – if rather cold – and we had a lovely time, except that as we were walking down the high street, suddenly I wasn’t … walking that is … or having a lovely time for that matter. I had a sudden and completely out of nowhere pain in my right ankle.

‘It’ll go in a minute,’ I said cheerful. ‘These sudden ankle pains always do. Let’s pop into this bookshop and get out of the cold while it gets better.’ Several minutes later and £20 lighter, the ankle hadn’t got better … although I had gained a rather fun read and got a little pressie for hubby too. So we walked (I hobbled, hubby walked) down to the harbour and had fish and chips while we waited for the ankle to mend … and it did … or so I thought. We had a lovely walk down the harbour wall but decided not to risk going the whole way (it’s a mile each way) in case the ankle went again. The sun shone, the lapwings called, the gulls squawked, the starlings sang beautifully in the hopes we’d feed them chips, and all was delightful.

Then when I got home the ankle started to twinge again. ‘It’ll be fine by the morning,’ I said confidently. (I don’t learn, do I?!) This morning it wasn’t terrible but it wasn’t good. This afternoon I decided to have a bath and see if that helped. It didn’t. By the time I got out of the bath BOTH ankles were flaring and I had knee pain too. And that’s where I’m at now.

On the bright side, I finished a felt picture I’ve been working on for a while and the hair dresser is coming soon so I can look slightly nicer than usual (not hard) for the first day of Hanukkah and then Christmas Day (aka 2nd day of Hanukkah this year), so it’s not all doom and gloom.

Happy Holidays everybody!

The new vision for the surgery’s journey

December 11, 2016 at 6:34 pm | Posted in rheumatoid arthritis (RA) | 2 Comments
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I do hope you enjoyed my buzzword-generated title for this post.

My local doctor’s surgery is ‘forming an alliance’ with two other surgeries in a town about 25 minutes’ drive way (when there’s no significant traffic build-up). This is, so they tell me, to help them recruit more staff so that in future they can offer new services to their patients which will help them avoid becoming ill in the first place. It will also mean that staff from the town B surgeries (obviously the town with me in it is town A <grin>) will work sometimes in our surgery and staff from our surgery will work in town B.

Well OK – I’m sure the staff won’t be thrilled about that, but I imagine they’ll live with it, and from a patient point of view all that sounds fine and dandy. So… why does it not fill me with seasonal comfort and joy? Well … if you’ve read any of my other posts about the surgery you’ll have an inkling already.

They welcome patient feedback and ideas, so here’s the letter I want to write them, but won’t.

Dear Surgery,

Thank you so much for your letter, sent to all patients registered in the surgery, outlining your new plans and apparently welcoming patient feedback. From past experience I am completely confident that you don’t welcome feedback at all but you know that if you don’t have a ‘consultation’ you won’t be allowed to proceed. However, since you have to ask for feedback, you might as well have some.

Any services offered to help patients stay well, as an additional benefit to what is already offered, will of course be welcomed. What will not be welcomed, and what again past experience suggests will probably be your next move, is being told in a few weeks, months or years’ time that ‘All patients with diabetes from here and town B will now have their monthly checks in town A’ and ‘All rheumatoid arthritis patients in both towns will now have their monthly blood tests in town B’, for example. This is of course something your letter is very careful not to state, noting instead that staff from town B will sometimes work in town A and vice versa.

Maybe you have no intention of forcing the mostly elderly and frequently infirm and, to put it politely, non-wealth patients from each town to go to the expense (often considerable since many don’t drive or can’t afford to run a car) of travelling to the other surgery for routine appointments once a month or even more often. If that’s the case that’s simply spiffing, splendid and super. I just have a feeling … Please tell me I’m wrong!

I still remember Mrs Practice Manager saying to me once how ridiculous it was that people objected to having to go into Norwich for the open clinic if they needed to see someone quickly. Well … yes, of course they do … given the local demographic, the fact it’s about a 40 minute drive (if you have a car and someone to drive you or you’re able to drive), the taxi return cost is about £55 and the demographic above, I’m not bloomin’ surprised!

Peace and good will to you and all men, women, children, penguin, cats and other animals,

 

Pollyanna

Pilates and a flare – hopefully coincidental!

December 10, 2016 at 6:01 pm | Posted in rheumatoid arthritis (RA) | 7 Comments

Yesterday I had my first ever Pilates experience – not sure what to call it other than an experience; not a class, not a treatment, I suppose a one-to-one session is the best way to put it. I did an hour of totally personalized exercises on weird bits of equipment – and it was great! The instructor was extremely encouraging and also had a sense of humour that fitted well with mine. She’d tell me exactly what to do, for instance, ‘Lie on your back, make sure you’re straight, as we practiced before, grip the bar with your hands, keep the elbows into your body, relax your shoulders and pull steadily down.’ I’d do that (or so I’d think) and she’d say, ‘Well done, really well done! Now, once more … ‘ and then dryly, ‘This time with the elbows in and relaxed shoulders’ and we’d both get the giggles slightly.

The other good thing was that if anything hurt AT ALL she would stop me from doing the exercise and either suggest something else or find another way to do it that didn’t hurt. She was very responsive and got by my over eager-to-please not going to admit it hurts attitude by keeping an eye on my face!

I felt as though I’d been stretched on a rack at the end of it … but in a good way!

Luckily for me my lovely hubby happened to have the day off and drove me in to Norwich and back. I think he was worried I’d come out completely crippled and unable to drive, and certainly while the first part wasn’t the case, I was very grateful I didn’t have to drive home after that first effort. Next time I will though!

Other than a slight feeling of stretchedness I felt fine – full of energy in fact. I did expect to be stiff as a board the next morning though – not so much joints, although of course they’re always a concern, but muscles I’d used in the session that I didn’t even know I had. For anyone that’s read Dune (or rather read Dune and actually remembers the beginning of it) I felt a bit like Paul Atreides being taught muscle training by his (not so) lovely mother! (Only my Pilates instructor really was lovely!)

I wasn’t even stiff as a board this morning – or even particularly stiff at all. But this afternoon all of a sudden I’m having a bit of a flare (or at very least a bad flare-ette). Given that I was fine this morning and that the weather’s taken a slight turn for the worse, I’m hoping it has nothing to do with the Pilates at all. Time will tell. Next appointment in January and if I have a flare straight after that one I’ll start to worry.

 

 

 

A cracking anniversary weekend

October 20, 2016 at 1:27 pm | Posted in Me, rheumatoid arthritis (RA) | 2 Comments
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Well, on a discussion on Carla’s blog, Irma said ‘Wouldn’t describing a normal life, despite RA, be far more conducive toward offering hope to others newly diagnosed?’ and I thought heck, yes … at least up to a point, and didn’t I used to do that more, and not just moan about a) pain b) the **** GP surgery c) the b**** hospital d) the **** NHS? Yes, I did! Perhaps I should do that again!

So here goes-  I’m not going to mention the pretty miserable last couple of weeks where I’ve been suffering quite a bit of pain and fatigue, and I’m not going to mention that the GP lost my prescription AGAIN and I had to push to get a sharps bin in time to actually put my methotrexate injector into it  … (although perhaps I’ll post about those later!) Here I’m going to tell you about our fabulous 10th anniversary weekend instead.

Hubby and I had a weekend away in Ely, not too far from home. I had the Friday off and we drove down late morning, very leisurely and had a really lovely drive – we were lucky with the weather and the we took the back roads so no traffic issues apart from the odd tractor. We reached the really lovely Poet’s House Hotel (which I posted about when we stayed there last year too) rather early for check-in, but luckily the room was ready anyway, and what a lovely room it was. Alas, no photos, but the rooms are beautifully decorated, spacious an comfortable … really comfortable. I slept like a log when I was there! We had mostly good weather and Ely is a beautiful city. ‘City’ makes it sound big, but it’s absolutely tiny. It’s a cathedral city, not an economic/size-related city. We had a delicious and beautifully served anniversary celebration meal on the Friday night – with none of the Fawlty Towers elements that plagued our Sussex stay recently! We shared a bottle of wine – which may have something to do with the sound sleep that night!

We visited Cambridge on the Saturday and the walk down to the station was through the cathedral grounds two lovely parks – about twenty minutes walk, but very pleasant indeed – and my RA wasn’t bothering me much at all so the walk was a pleasure.

In Cambridge, apart from a general potter about, we went to a really superb exhibition at the Fitzwilliam museum, called Colour: The Art and Science of Illuminated Manuscripts. It really was a cracker of an exhibition – unlike most museum exhibitions in my experience, it told me pretty much everything i wanted to know and much, much more! It was easy to pick out the info I wanted (mostly about science and technique) and ignore the bits I was less interested in (mostly the details of which biblical tale was being illustrated etc.) and the way it was organised meant that even though it was quite busy, everyone could easily get to see everything. As the icing on the cake, we went to a fascinating talk by Patricia Lovett, who is not only an expert on calligraphy and the creation of such manuscripts but also a tremendously witty and personable woman who kept us all entertained for over 1.5 hours. She must have been tired after it but it didn’t show! I was flagging slightly by then, although I didn’t notice during the talk, because it was so good, so we went to the cafe and got a drink to perk us up, and then walked back to the station (more walking, RA still not a problem!) and then back up to the hotel (more walking, still fine!) We then headed all the way back down the hill (I forgot to mention Ely is on a hill) to get fish and chips, in memory of what we actually did on our wedding night ten years ago! We ate them in one of the parks and then headed back to the hotel, back up the HILL. Yes, I was tired and achy by this time, but that was OK because we were done for the day!

The following day we thought we’d go for a walk as I was quite stiff and wanted a chance to loosen up before going home … but we didn’t get very far. Just down the road we found a book shop which, to our surprise, was actually open. (This was Sunday morning.) It was a new bookshop, not second hand – you don’t see many of those about anymore! The staff were very cheerful and chatty and offered us ‘anniversary coffee’ when they found out why we were there – and lovely coffee it was too. That was the only disappointment in Poet’s House – great food, not so great coffee! Of course that meant we spent all our time there, not walking – but that was fine. I came away with two books I bought myself and one hubby bought me as an anniversary present.

Couldn’t have gone better really – apart from a bit of a breakfast hiccup where Fawlty Towers caught up with us again… but I won’t go into that! It was a gem of a short break and lots memories I’ll treasure. In fact, to help us remember to treasure the memories, hubby’s anniversary present from me will the picture that was hanging on the wall in our bedroom at the hotel. It’s the Bookworm by Carl Spitzweg. It’s a satirical picture poking fun at the poor bookworm, but in spite of that hubby and I both would actually quite like to BE the bookworm, so we’re happy to have it in our living room cum library!

RA Blog Week: Day 5 – Great blogs I’ve read this week

September 30, 2016 at 5:39 pm | Posted in arthrits, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 1 Comment
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My picks are top heavy towards the top of the list of contributors, not because they’re (as far as I know) any better than the bottom of the list or the middle, but because I started being methodical and going to each blog in turn, and then I got short of time and had to skip to a few others at random – so if I’ve missed you out it’s nothing personal!

I seem to have found the biologics posts especially interesting and inspiring, maybe because it’s something I know so little about. I really enjoyed the wide variety of takes on this fascinating topic.

Starting stories: A depressingly typical but nicely written starting story can be found at Jax.

Biologics: A great, and well balanced, tale of biologics from someone who has had a LOT of experience at As My Joints Turn. And a less positive one, sadly, so far, for Trish. But to balance that, Brenda has had a great experience. And a wonderful post in defence of biologics from Lene at the Seated View, and a fascinating alternative take (as always) from Cateepoo. 

Wildcards: There’s a terrific post about RA and depression over at Single Rheum including some great advice.

Active versus passive patient: A nice take on this from J G Chayko and the old lady in her bones. 

The pain of pain meds: Arthriticchick says it all and Deserae’s is actually painful to read  … but I think you should! I really empathized with this one.

It’s been a fascinating week and I’ve come across a whole heap of blogs I didn’t know were out there.

Thanks to Rick Philips of RADiabetes for setting it all up and introducing me to them, and for some great posts of his own. I wish I had had time to participate more fully and post and read more but it’s been one of those weeks! Maybe next year …

RA Blog Week Day 4: The Pain of Pain Meds

September 29, 2016 at 2:13 pm | Posted in rheumatoid arthritis (RA) | 2 Comments

Um … I have no horror stories to share because of the new laws; we can still get opiates when we need them in the UK … for the moment, and I’m lucky in that most of the time, in between flares, paracetamol (Tylenol) does the job for me pretty well. During flares I intersperse that with ibuprofen and that’s as good as it gets – still painful, but that combined with hot water bottles, cold compresses etc. and my Physicool bandage, usually keeps me going until the steroids kick in. Of course, getting steroids is a whole nuther story...

My sincere commiserations to my US buddies, and indeed everyone suffering under the new laws there on pain meds!

So, since I can’t use the other wildcard and write about depression as I don’t suffer from that either, that’s me blogged for the day! I shall look forward to spending my blogging time reading some other blogs, so that I have something to say tomorrow on the topic of Great Blogs I have Read this Week! It’ll mostly be great blogs I’ve read on Thursday because work’s just a tad hectic right now, with one employee on maternity leave and one about to take holiday (and I only have two!) Now if I could just teach Tiny Cat 2 to type …

RA Blog Week Day 3: Advice

September 28, 2016 at 2:25 pm | Posted in rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 8 Comments
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I’m taking a ‘wildcard’ option today. The topic is ‘Biologics’ but I’m still on good old methotrexate and likely to remain so unless things get much, much worse, because biologics aren’t an option for mild RA in the UK. So there are two wildcard options – depression and advice. I don’t suffer from depression although a flare certainly makes me low and grumpy, so I’m going for advice.

What advice can I offer people who’ve just been diagnosed?  Well, off the top of my head, here goes. I’m sure there are many more sensible things I could have said if I’d been more organised about RA blog week – but this is me!

  1. DON’T PANIC!Perhaps I should display this in ‘large, friendly letters’ across my blog, a la Hitchhikers’ Guide. 
  2. Listen to your doctors and nurses, but don’t assume they know it all. (That’s for them to do and they usually do, but it’s not the case
  3. DON’T PANIC specifically about the side effects in medications. Most people don’t have any side effects. You might be lucky, you might not – but if you don’t try, you’ll never know. I’ve been lucky and had only the most minor of side effects, or none at all.
  4. Get advice from the RA community – local support groups, online support groups (such as Health Unlocked in the UK) and local or national charities e.g. NRAS in the UK, who I have found extremely helpful.
  5. Use what aids you need – and find out what aids are out there that can help you.
  6. Don’t be embarrassed to tell people about your RA and to use aids. Amanda John has written some terrific stuff over the years about dealing with embarrassment – or sometimes failing to do so.
  7. Find ways to deal with people – This can be HARD! Most people will be curious, many will ask stupid questions and even more will offer completely useless advice about their aunt’s cousin’s daughter’s dog who had RA, ate some honey and got better. It won’t help you to give a snappy answer, although it might feel good at the time. (I learnt this the hard way.) At the same time, try to find a quick way of explaining RA – true friends will listen to you harp on about for hours; the more acquaintance-level ones are understandably easily bored!
  8. Read blogs about RA – but remember everyone’s experience is different. Just because Carla, author of the terrific Carla’s Corner, has had to have multiple ops, doesn’t mean you will. Just because Wren has days when she can’t turn a page without pain doesn’t mean you will. But when you want support and advice the RA blogging community is a great place to be!
  9. Pace yourself! This is so hard! Fatigue is a big part of RA for a lot of people. ‘Pushing through it’ and ‘carrying on regardless’ DOES NOT WORK! You need to pace yourself. I frequently refuse to arrange to do something Sunday if I’m already busy Saturday – or vice versa, and I am pretty strict about keeping my work hours to a standard working week.
  10. Consider writing a blog. As you can tell from some of my more moaning efforts, it’s cathartic! It also puts you at the heart of the great RA blogging community, allows you to find new friends who really understand and empathise with what you’re going through, and allows you to moan at the blog sometimes if you feel you’re overdoing complaining to your loved ones!

RA Blog Week Day 2: Active or Reactive Patient?

September 27, 2016 at 10:20 am | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 1 Comment
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Well, what a dismal excuse for a blogging penguin I am! I completely forget that yesterday was day one of RA blog week. I guess this makes me a reactive blogger, or at least definitely not an active one, but now it’s day 2 and we’re discussing active versus reactive patients. Well, I’d like to think I’ve been an active patient from day 1 … that’s what I’d LIKE to think … and indeed I was already looking into RA and researching it before I was diagnosed, because the GP had suggested it as a possibility and I wanted to find out more. Pretty active, eh? Maybe too active? Maybe I was filling my head with RA concerns and worries, and RA symptoms that I might then convince myself I had?

I don’t think that was the case though – I think it’s important to know as much about the disease as possible, as soon as possible – although having said that, there’s so much info out there of, shall we say a less positive nature, that it can be pretty scary! It’s important to remember that most people with only mild RA, such as myself, have other things to do than write about the fact that they’re actually pretty OK most of the time and have nothing much to say! Consequently the really useful and important blogs out there, and other patient inputs, such as the Health Unlocked network, are written by patients with serious problems and severe RA.

Nevertheless, I was active from the start, partly because it was such a relief to have even a possible diagnosis, after years of odd symptoms that had doctors scratching their heads and trying to tell me I was depressed. (I know depression, I’ve lived with people with depression, I have friends with severe depression … I can recognise it, and I’ve never been depressed in my life.)

Having said all that, it’s hard to remain an active patient, I find, once you’re a number in the NHS health system. It’s hard to keep going and pushing and demanding what you’ve already been promised but aren’t getting, when you’re already feeling at a bit of a low ebb on the health front. It’s hard to put up with appointments not when you need them but when the hospital feel like fitting you in, and with nurses who clearly don’t care. Even harder when you read about the system being hailed as a paragon of virtue in the US. The IDEA of the NHS is fabulous – the ideal is spot on – the actual working is a bit of a disaster, sad to say. There are times when I go along to an appointment with no more active thought in my mind than, ‘Let’s get this over with for another six months to a year.’

Having said that, I think I’m still pretty active. I’m still prepared to fight with the GP for a steroid shot when I’m darned sure that’s what I need … and I’ve been proved right so far. And I’m still interested in the disease from a standing back and looking at the biology, being fascinated with the latest research and possible cures on the horizon point of view.

I think this is a rather different picture of the ‘active patient’ than the one painted by many of my US blogging friends. The US health system is as badly flawed as our I think, but in very different ways. IF you have got health cover and can maintain it, you’ve probably got a relationship with your rhemmy doctor and can see them when you need it (or within a few days not a few months). If you go in with a list the doc is impressed whereas here they just roll their eyes and groan. But fundamentally to my mind an active patient is one who takes control of their RA as much as possible, and not just on the purely medical, drug-related, front, but also doing what we can to control it and minimise impact – such as exercising whenever possible, eating sensibly etc.

Why haven’t I talked more about that? Because I’m a bit rubbish at it! I have been trying to get a 1.5 mile walk in at lunchtime though – sometimes it’s only 1 mile, sometimes it’s half a mile, but at least I’m trying! As to eating … let’s not go there in this post. It’s something I do rather too well!

 

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