Pollyanna Penguin’s RA Blog
This is a blog about me, my recently diagnosed rheumatoid arthritis and my struggles to stay positive about it!Archive for occupational therapist
Wax bath therapy
I’m slightly confused because my lovely physio has suggested wax bath therapy for my hands … and referred me to an occupational therapist for it. My confusion arises from the fact that I would have thought that wax bath therapy was a physio sort of thing to do and definitely not an OT thing! I wonder if the OT will say the same when I see her? I wonder how long it will take to see her, given that it took seven months to get a physio appointment.
Anyway, if anyone has ever used a wax bath could they let me know; I’d be really interested to know if it helped at all. I did find a research paper that said it could be helpful in RA if combined with exercises but not on its own – well my hands certainly get plenty of exercise with all the typing and craft stuff, and I do some simple range of motion type exercises in the mornings too, so perhaps the wax thing will do some good.
New NICE guidelines on RA
Well it seems that NICE (the ironically named and aforementioned National Institute for Clinical Excellence in the UK) have done an about face on their original ‘if you try one anti-TNF and it doesn’t work, tough. You can’t have another one, ner ner ne ner ner’. They’ve released new guidelines which are actually very positive. Of course it doesn’t mean that all rheumatology departments will agree with or follow their guidelines but I suppose it’s a start. Here are some of the positives (IMO), and it’s only a very select few that resonated with me:
- Newly diagnosed people should be offered a combination DMARD therapy straight away, including methotrexate, ideally within three months of persistent symptoms. Well I don’t think I know ANYONE in the UK that was diagnosed within three months of persistent symptoms, let alone given the combination therapy option, but I’m glad if that’s going to change.
- A level of what is acceptable disease control should be agreed with the patient in advance and worked towards. HA! I’ll believe that when I see it. The nearest we come to discussing acceptable levels is ‘Really you’re not too bad. I see much worse people in here every day.’ Well yeah, and there are people much worse off than me in Africa, and indeed round the corner, but that doesn’t mean I have to be content with my lot!
- Quoting direct from the NRAS site (www.rheumatoid.org.uk) “People with RA should have access to a multidisciplinary team (MDT); this should provide the opportunity for periodic assessments of the effect of the disease on their lives ( such as pain, fatigue, everyday activities, mobility, ability to work or take part in social or leisure activities, quality of life, mood, impact on sexual relationships) and access to a named member of the MDT (for example, the specialist nurse) who is responsible for coordinating their care.” Well yeah, I have access to a multidisciplinary team. Like any team, some are fabulous (physio that I see now, occupational therapist, even if we don’t share a sense of humour, rheumatology nurse at the GP surgery), and some aren’t. One that isn’t is the one who would no doubt be ‘coordinating my care’, gawd help me, if that happened; the RA Nurse Practitioner at the hospital. I can imagine quite vividly what her assessment would be like. She would read off a form in a board voice, ‘Are you depressed? No? Good. Do you have sex? No? Good.’ And of course what’s required is that thing they don’t have time for at hospital, a CONVERSATION!
And don’t get me started on the patient guidelines – well, if you know me you know I will no doubt get started on the patient guidelines when I have time and feel up to it, but just for now I’ll say they’re absolutely appalling, patronising, insulting …you get the idea. I asked Arthritis Care for a copy. They were wonderfully efficient and friendly and sent me a copy return post, but having received them I took one look and went straight to the NICE website to find the health care professionals’ version – THAT actually told me things. I am sorry I caused paper and Arthritis Care money to be wasted. The patient guide had lots of nice white space and simple bullet points that told me that as a patient I should definitely have the right to treatment, possibly with drugs. (OK, I exaggerate, but thin doesn’t even begin to describe the level of information!)
Here’s a a link to the patient guidelines if you want a laugh or cry. And here’s a link to the healthcare professional guidelines if you actually want some information.
I’m probably being a bit harsh, but it surely can’t be that hard to have something really, really simple with links or (see page whatever) if you want further detail, instead of assuming all patients are clueless. It’s as bad as the hospital rheumy nurse giving me the very useful methotrexate book and saying, ‘but really there’s more information here than you need’. I think I should be allowed to decide that.
Flare up – and I know I brought it on myself!
The OT gave me a very sound lecture on pacing myself and how important it is! Over the past two weeks I have dismally failed to pace myself, and over the past couple of days I paid the price! I had been feeling much better, and we’re fantastically busy at work, so I’ve just been getting on with it. Getting on with it means working from 8.30 to 6.30 most nights, and not taking a proper lunch break, although I really DO try to get up every hour and have a stretch.
And, because I was feeling so much better, I didn’t crash at the weekends either. It was great – I was busy, I was enjoying myself at the weekends, why slow down?
This Saturday, I had the answer to that question! I was full of aches and pains when I woke up, attributed it to morning stiffness and thought no more about it. But Sunday I was really quite unwell and hardly got out of bed. I was sleeping badly because I woke up in pain, and I felt like everything was back to square one.
The good news is that after a much reduced working day yesterday and a rest all day Sunday, I feel much better today. The bad news is that apparently if one keeps doing this it’s not just a vicious circle … as in feel great, be madly active, crash, get better, feel great, be madly active, crash etc. … it’s actually a vicious spiral in a downward direction. So each time you crash things are just that little bit worse, and you don’t get quite so much better.
Well, I’m glad I KNOW this, and I know what to do about it. Now all I have to do is actually DO it … which, alas, is much easier said than done!
Occupational Therapist – jolly useful!
I consider myself very lucky that my rheumatology department runs this early arthritis clinic, even if it is a little tricky to get into it (as you’ll know if you’ve read the two previous posts). I don’t think someone with symptoms as mild as mine would normally have access to an OT. Silly little things have become very frustrating over the last few weeks – opening jars, turning on the kitchen tap, which gets quite stiff, and, on bad days, gripping anything that’s smaller than an inch or so in diameter. I wouldn’t have thought to bother a doctor about any of these things but it was great to talk to someone who not only really understood the frustration, but actually had some practical advice to offer. She’s suggested simple pipe lagging, which comes in a rang of diameters, can be slid over things like toothbrushes, hair brushes etc. to make the grip softer and wider, and she’s given me a bit to take away and try. She’s also given me a bit of magic plastic grippy non-slippy semi-sticky stuff. It’s officially known as a piece cut from a Dycem non-slip reel but I just call it magic! It does the gripping for me so I just drape it over the very stiff tap and I can turn it on just using the palm of my hand! I expect one can open jars and things with it too, but they do also make a jar opener so I might look into that. I’ve got a cane with a moulded hand grip for really bad days … although if my knee’s bad then my hands will probably be too bad to use it … at least I have the option though. And finally I’ve got her phone number … which if she actually answers and is happy to give advice over the phone, could be worth its weight in gold.
I really shouldn’t say this, because she was so lovely, but we obviously didn’t share a sense of humour. ‘What do you use to open jars?’ she asked, before providing me with the little slice of blue magic mentioned above. ‘My husband,’ I answered, with a grin, or something as close to a grin as I could manage given my mood. Now everyone else I’ve said this too has laughed, or at worst chuckled, but she took me deadly seriously … and in fairness I was serious, I suppose. I do use hubby to open jars, but that’s never worried me unduly. ‘Hmm,’ she said, ‘now we must maintain our independence, mustn’t we?’ One of my pet hates is being referred to as ‘we’ but I let it go, because really, she was so lovely and helpful.
Early Arthritis Clinic – I get there at last! Hurrah.
It seems to me, and this is sad if it’s true, especially as I have an academic background myself, that the lower you go down the medical food chain, the more human the practitioners become. So, at the top you have the consultants who are so far removed from reality that they only see you as a point on a chart of severe to mild cases; then there’s the nurse practitioner, brisk and efficient, not going to put up with her time being wasted, slightly patronising, but well-meaning and quite friendly on a good day. And somewhere ‘below’ her … although some people reading this might ‘flame’ me for suggesting they’re not on a par (or perhaps even that they should be higher), are the occupational therapists and physios. So far I have experienced two physios and one occupational therapist and they’ve all been lovely – human, helpful and really caring.
I’m afraid the occupational therapist (OT) might have been a bit too human and caring under the circumstances, which is why I ended up rather snuffly with her, if not quite bursting into tears! I was having a BAD day – I don’t know why, but another law of arthritis (or mine anyway) seems to be that you NEVER see the consultant or nurse practitioner on a bad day. However, the day I attended the early arthritis clinic, last week, was a very bad day, thank goodness. If you don’t have RA yourself, or perhaps even if you do have it and don’t have to work within the confines of the NHS, you might not understand the ‘thank goodness’ comment. Well it seems to me that unless the consultant or nurse practitioner actually sees you unable to walk, or with beetroot red joints the size of turnips, they don’t really believe it happens, although they’re all too polite to say so. As my RA seems to come and go and be peripatetic as far as which joints are affected, this is thoroughly frustrating!
Anyway, I turned up at the clinic, after the whole appointment debacle I’ve already mentioned in the post below, and the receptionist couldn’t find me on the system. She was polite, friendly and baffled. Eventually she called over another receptionist, who was also baffled – although lacking the polite friendliness of the first. I was getting just a tad fed up at this point because I hurt, I’d been standing for a while (not comfortable) and I was really worried that after the five month wait they were suddenly going to decide they couldn’t find me on the system … again … and I didn’t have an appointment. She looked at me over her glasses and said, very patronisingly, ‘And what appointment did you think you had today?’ And believe me the italics were hers, not mine – there was a very scornful stress on the word ‘think’.
Eyes flashing, lips a thin line, I growled, ‘I know I have an appointment with the early arthritis clinic.’ She continued to look blank. ‘A combination of occupational therapy and physiotherapy,’ I explained.
She gave a deep frustrated sigh and said, very rudely and abruptly, ‘Oh well then, you’re in the wrong place.’
‘Interesting,’ I said. ‘They told me to report to rheumatology reception.’
She went back to baffled. At that moment a third receptionist, who had been sitting quietly in the background dealing with other things, (or possibly just eavesdropping and having a laugh), said ‘No, the early arthritis clinic – it’s this list here you should be working from, and look, the lady’s name is on it.’
‘Call that a list,’ she said, with scorn. Now I have to agree with her here – it was a slightly smaller than A5 bit of paper with a tear down one side, looking like scrap, with a few names scrawled in biro down it. But still … it was her job to know it was there or someone else’s job to have told her. Rather than apologising nicely she managed to grate out, ‘Well … we apologise. Take a seat.’
I was fuming and unfortunately when I fume, rather than yelling and shouting, or even being calm and productive, I just want to burst in to tears … so when the OT was so nice that’s nearly what I did! Anyway, she was very helpful and made some useful suggestions, which I’ll post about separately. Then I saw the physio, who gave me some basic ‘range of motion exercises’ for all the joints and has referred me on for more physio. No idea when that will materialise, so I’ll keep forking out £35 a week for the private one for the moment! I hope the NHS one kicks in soon though!
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