Monthly Archives: November 2011

How many spoons will I have today?

The spoons in question are an analogy for available energy. If you haven’t read spoon theory, it was developed by a woman with lupus who was trying to explain to a friend what it was like to live with a disability/illness. She used the spoons to help her explain that for many people – especially young people – spoons (energy) were limitless. However, for people living with illness or disability, there are only a limited number of spoons (energy) available to them each day, meaning that careful choices need to be made.

As she says: “the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.”

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Why exercise is so important to me

I was never particularly active when I was younger. Certainly not at school, where the emphasis was on competitive sports, as I was terrible at most of them.  I didn’t really start exercising regularly until I was almost 30 and training for a Himalayan trek. It was a big shock to my body. I hated it at first. But gradually, I grew to like going to the gym, and enjoyed being fit enough to enjoy cycling round Manchester; exercise became an important part of my life.

However, just a few years later, the palindromic rheumatism put a halt to my regular training, especially at the beginning, when I didn’t know whether or not I’d seriously damage something.  Often, I’d mistake a flare-up for an exercise-induced injury, but when the pain stopped so suddenly, realise that it was just the arthritis.  And yet, as all the leaflets and consultants will tell you, exercise is important for people with arthritis. Once I was reassured that I wouldn’t hurt myself, I was back at the gym. But the problem was… each week there was another bit of my body that wouldn’t work. Sometimes, I’d not be able to use my hands, so weights were out of the question. Other times, my knees were giving me gip and there would be little point doing anything at all. Eventually, I lost all motivation for going because I couldn’t be consistent enough. I concentrated instead on the fact that I was cycling when I could (as a mode of transport) so at least I was getting some aerobic exercise. With occasional yoga and pilates, I figured that I was doing enough.

The thing that I’ve always loved more than anything is dancing. I love lots of different kinds of music – especially live music – and I love the feeling of totally losing myself at a gig, and dancing totally unselfconsciously. But I don’t like clubbing any more (too loud, too late, too full of drunk people), and there aren’t enough live gigs to get me out dancing regularly enough.

I’ve never been trained in any formal kinds of dancing, so at first, the idea of dance exercise classes – which is essentially what Zumba is – was kind of daunting. However, my first class last year was so fantastically fun and liberating that I was hooked. Never mind that sometimes my knees meant that I couldn’t really jump as much. If I could walk, I could go. Unfortunately, when that teacher left the leisure centre, the classes stopped and I couldn’t find any others. However, a year on and there heaps of classes near me to choose from. Even better, there are classes in the morning – when I am more likely to actually have the energy to GET there. The problem with exercising in the evening – when most classes are on – is that I often have run out of energy by then and, even though I know I will love it, can’t really drag myself to get there.

The fact that I love the music at Zumba and enjoy the classes means that I can now incorporate some regular exercise back into my life again. While I was feeling quite depressed over the past few weeks, it’s no exaggeration to say that Zumba was the only thing that was keeping me going and getting me out of bed in the morning.

The class is just so much fun that it takes me out of my head (now that I’m more familiar with the routines), and into my body. Often in my life, when I’m focusing on my body, it’s for a negative reason – because I’m in a lot of pain, or because I can’t do something (my hands are too stiff/knees stop me walking/jaw stops me eating). But when I’m doing exercise – whatever type of exercise – even if that is limited by pain or a flare up, I feel so much more positive about myself. I know that it’s to do with the endorphins, but I also really think that it’s an important aspect of being present, of being in my body, in the now.  It promotes a more positive relationship between my mind and the body that mind is living in. Also, I spend so much time in bed when I am at home that moving as much as I do in a class makes my body feel alive again.

Today, I was in quite a lot of knee pain in class and the temptation was for my mind to take over and be disappointed because I couldn’t participate as fully as I normally do, and frustrated that I wasn’t ‘up to it’. It took a lot of effort, but I managed to revel in the music, in the swing of my hips, in the fact that I was there AT ALL and not in bed, and in just letting my body enjoy what it could do. Amazingly, the finger flare ups had completely gone by the end of the class, and the knees were no worse for it either. I left feeling exhilarated and positive again. I can’t wait for Friday’s class.

A positive consultation

I woke up to a multiple joint flare up this morning, and was sort of relieved that I would have something ‘physical’ to show the consultant at my appointment today!

It’s been just over three weeks since my disastrous consultation with Dr ‘Y’, and I still feel fragile about it. So, even though I was looking forward to trying to make progress about changing my disease modifying drugs, I was also really nervous about how today’s consultation might go. On arrival, I was relieved to find that I was actually going to get to see Dr S. Even so, I was pretty nervous while waiting, especially as Dr Y was also working the clinic.

The consultation itself went pretty well. Why all doctors can’t be this sympathetic and reasonable? It didn’t start too well though. Dr S had already received my official complaint about my treatment at the clinic over the years, and the particular consultation three weeks ago. He pointed out to me that it would take a considerable amount of his time to investigate fully and deal with the complaint properly and even then, I probably would not get the outcomes that I desired.  Thankfully we didn’t dwell on this too much, and we managed to move on to actually discuss both pain management and a new course of treatment for me.

I’d brought a couple of abstracts of articles detailing the use of antibiotics in the treatment of people with rheumatoid arthritis. Thankfully, unlike Dr ‘Y’, he was not threatened by me bringing in what I’d found, though he did point out (reasonably) that he could not make a decision there and then just on a quick reading of two abstracts. We did discuss it a bit though, and he did recall that on my return from working overseas, I did report fewer flare-ups while abroad and agreed that it was interesting that I had been taking antibiotics at the time. He explained that initially, rheumatoid arthritis was thought to have been caused by an infection and that antibiotic treatment for it was not actually new. Apparently, people with rheumatoid arthritis used to have their teeth removed and their appendixes taken out as a way of treating it!!  Thankfully things have moved on from then, even though it’s not really understood all that much more I think!

Anyway, so antibiotic treatment isn’t a new thing at all, but it has never been shown to have a high enough success rate to be a regular treatment. However, it does show greater success with reactive arthritis apparently. Thankfully, he agreed that my case was ‘unusual’ because Palindromic Rheumatism is so little understood and that he could understand my reluctance to move up to Methatraxate if there was another possible route to go down first.

I told him that I was probably in some sort of pain or flare-up about a third of the time and that it was really affecting my quality of life. I know preventing joint-damage is generally the priority for a rheumatologist, but with PR, that’s less likely to happen because of the nature of the condition. So as far as I am concerned, my priorities are just about not being in pain (or exhausted) as much of the time as I am at the moment. Thankfully he listened to this sympathetically. We finished the appointment with him agreeing to go away and read the full papers that I had brought abstracts of, and possibly do a little more research to see what else he could dig up.  He promised to get back to me with a decision in a few days.

I finally feel as if I’ve been taken seriously, and almost have a glimmer of hope that there could be something worth trying that could reduce my flare ups. Watch this space.

4 days til next rheumatology appointment

4 days to go and I’m getting a bit nervous about Monday’s appointment with the rheumatologist. I had hoped to see this particular consultant at my appointment three weeks ago, but for some reasons, the powers that be had allocated me an appointment with a consultant who had never seen me before. Without going into too much detail, the appointment left me extremely distressed, as well as leaving me exactly where I was before in terms of treatment. I had wanted to discuss changing to a different regime of “disease-modifying” drugs as I had felt that the ones I’m on weren’t substantially reducing my flare-ups enough.

I was so upset by this appointment, that I phoned up my consultant’s secretary in tears and she managed to get me an appointment with him. At least I hope it’s with him. I can’t count the number of times I’ve turned up expecting to see Dr S. and ended up seeing a registrar instead. So, yes, I’m anxious about whether I’ll even get to see him.

I’m also bringing along a couple of bits of scientific research papers with me that I wanted to discuss. I found one to do with diet and palindromic rheumatism. When I showed the horrible consultant the paper, he barked at me “how did you get hold of that? you’re not supposed to have that!” and refused to read or discuss it rationally. I’m hoping that Dr S. will have a more mature attitude.  I think my symptoms are pretty complex, so I think it could be tricky to prove a link, but I did want to discuss it anyway.

I am also bringing an abstract of a paper about a type of antibiotic. While I was living overseas in 2007/8 I was taking a type of antibiotic used to stop you getting malaria and I had fewer flare ups. Now, this could have been down to many many other factors – different diet, being under a LOT of stress, the good weather – or a combination of all of them. But when I did a search on the internet I found out that this antibiotic is sometimes used with people with rheumatoid arthritis. So, I wanted to discuss this with Dr S too.

With only a short appointment allocated by the NHS – 15 minutes – I may not get the time I need to fully discuss or consider these options. So that makes me nervous too. The last horrible consultant had told me off for taking up too much of his time. But how can I fully appraise the implications of new treatments, discuss pain management AND discuss what has been happening in the previous six months in such a short space of time? It’s hard enough with a consultant who has seen you before. Even harder with one who has never met you or read your notes and goes over a bunch of treatment options you’ve already tried. At least Dr S. has seen me before, so hopefully we can get straight down to business. I hope.

Brief first post (but not the last)

Hello everyone!

Having now had palindromic rheumatism for 7 years, I’ve hit a bit of a tough patch recently – not with the illness per se – but with the practical and emotional sides of living with a long-term chronic condition. Palindromic Rheumatism (PR) is a relatively rare condition, and there is little information available about  it. Over the years, I’ve found online forums and blogs to be incredibly useful, both in terms of offering support, and providing me with leads and credible information. I decided, therefore, to start my own blog, partly because I find writing therapeutic and partly with the hope that other people diagnosed with PR might find it useful. Comments welcome (indeed, positively encouraged).