Rheumatoid disease is more descriptive than rheumatoid arthritis. These words capture its systemic nature and that it can affect organs such the heart, lungs and eyes. RA, by contrast, is too easily confused with osteo arthritis. Lots of people, upon hearing I have arthritis, say, ‘Oh, I have a bit of that in my knees’, or ‘My mum has that’. Questioning them further, it turns out that they have osteo arthritis. When they find out what RA/RD really involves, people often look surprised. Many people don’t know the symptoms and the reality of what it’s like living with RA/RD. I’m pleased that the National Rheumatoid Arthritis Society’s RA Awareness Week 2014 (16th-22nd June) has ‘invisible disease’ as the focus, as its hidden nature is a huge part of the problem when it comes to public perception.
Until recognition improves, I’m going to continue using both rheumatoid arthritis and rheumatoid disease in conversation. Media coverage of RA/RD should focus on the fact that drug remission is possible, although it may take years, and that lots of people can successfully manage their condition with the right treatment and support network (from friends, families and health professionals). Having said that, it’s also important that health professionals tell RA/RD patients about potential side effects from medication but this shouldn’t be done in a ‘doom and gloom’ way which makes people too scared to take the drugs. The key message is that the benefits of taking the medication outweigh the risks. I had no idea what would happen to my joints if I continued without drugs (I had a 7 month hiatus from them), because no one had ever properly explained what could happen and I didn’t know I had erosive RA. That all changed when my GP said ‘Your joints will crumble if you continue this diet-only approach’. I also think that talking to others going through it is invaluable, whether in person or online. Sharing stories and encouragement has really helped me and I’m sure it’s helped others too. In an ideal world, there would be no need for an RA/RD Awareness Week, as everyone would know what it is, how its treated, and that remission is a distinct possibility.
After my first Enbrel injection today, I waited for a while in the clinic with a sense of dread, worrying if I would have a reaction. Half an hour later, I left, feeling a bit nauseous and tired but otherwise ok. Later on in the morning I developed a slight rash on my face and chest as well as a sore throat, but this was manageable. Then I had yet another blood test (my last one was three days ago). In the afternoon I heard from the specialist nurse that my neutrophils were low. So I have to miss the next dose, repeat the bloods, and perhaps see a haematologist to find out what’s going on with my blood results. Now I’m up at 2.30am in the morning with chest pain, a racing heart and anxiety about what the future holds. One of the hardest things to deal with when managing chronic illness is the uncertainty: over treatment, over test results, over the prognosis. Having an aggressive disease that is not yet controlled is scary and even more so when the treatment is complicating things, not improving them. Hopefully I will be able to continue on Enbrel if my neutrophils go back up to normal(ish) levels.
I’m approaching this by focusing on what can be done now, rather than in the future. It’s very easy to get carried away thinking ‘What if this happened?’, ‘Maybe this drug won’t work either’. This evening I went out and socialised, despite feeling exhausted, because I knew it would boost my mood and distract me from all of today’s events. And it worked. Taking this ‘living in the moment’ further, I’d like to do a mindfulness meditation course soon to get a fresh perspective on what I need to do to create change in my life and to assess how to reach my goals. Living with a disability (or several) shouldn’t stop you from aiming high and succeeding in whatever you choose. And if it doesn’t work the first time, there’s always another opportunity.
At an event tonight I watched guys from the Airborn Academy of Parkour doing free running tricks, flips and twists. It was absolutely mesmerising to watch. I’ve no idea how many hours of practice they put into it but they are real experts at what they do. I also learnt the difference between the two: apparently parkour is about getting from A to B as efficiently as possible, jumping over railings, swinging from one part of a a building to another etc; whereas free running involves still getting from A to B but taking more time, incorporating your own tricks, flips and twists. A backwards flip from a standing position? No problem. Forget the one-handed cartwheel, what about the no-handed cartwheel? Easy. It was a seriously impressive display and got me thinking again about what people are capable of and how much the mind comes into it. When you have rheumatoid arthritis, it’s easy to start thinking about what you can’t do physically. But what about banning the phrase ‘I can’t’ and thinking what you can actually do. I’d definitely like to do more – not trying to be superhuman like these guys – but their stunts have motivated me to get more active and start aiming towards a tangible goal. I may not ever be physically up to running a marathon or leaping across town doing parkour, but I could certainly aim for a 5k walk.
For a long time I didn’t even know about the Disease Activity Score, ‘a measurement of rheumatoid arthritis disease activity’. It turns out that mine is currently 6.1. Apparently that means it fits into the ‘severe disease activity’ bracket:
• Less than 2.6: Disease remission • 2.6 – 3.2: Low disease activity • >3.2 – 5.1: Moderate disease activity, may merit a change in treatment for some people • More than 5.1: Severe disease activity, will merit a change in treatment for most people
Rather than freaking out about this newly acquired knowledge, it’s actually strengthened my resolve to do everything I can to get better and to lower my DAS. That means a combination of drug treatment, regular blood monitoring, physiotherapy, hydrotherapy, hand therapy, wearing splints on my hands, a healthy diet, relaxation and gentle walking.
What I’ve learnt is to ask lots of questions to get informed about treatment plans; to trust health professionals to carry out all the relevant health checks rather than worrying about it; and to keep making time to enjoy non-health-related interests. The more I know about this disease (I used to say condition but that made it sound more harmless and non-aggressive than it is), the better equipped I am to deal with it mentally and physically.
It’s only been three days since starting Sulfasalazine and having a steroid injection. And it feels like it’s starting to make a difference already. Not a dramatic difference, but I have slightly more movement in my left hand and wrist and less overall joint pain. On the flip side, my fingers and ankles are swelling up like the Michelin man (the living tyre)!, but perhaps that’s due to the current heatwave.
Treating my rheumatoid arthritis feels like taking part in an experiment, as even though the drugs have been used on other people successfully for years I’ve had three bad reactions to separate medications since September. From Wednesday I’m doubling the dose of Sulfasalazine so fingers crossed that my health will continue to stabilise. Next up, there’s more hydrotherapy, physiotherapy and a trip to the thoracic (chest) clinic and the neurologist. Plus fortnightly blood monitoring as a result of the Sulfa and I’ll keep going with the gluten-free and dairy-free diet. In the midst of all these medical appointments, thank goodness for my friend’s wedding party and my cousin’s christening – should be fun and a great distraction. As I lift my non-alcoholic cocktail, I’ll be toasting not only their happiness but also celebrating the gradual improvements in my health.
One of the best ways I’ve found to deal with chronic pain is keeping myself busy and making time to actually have fun and relax. When so much of your time is spent going to medical appointments and talking about your (bad) health, I think it’s important to do stuff that takes your mind off things. Today, I went to an event where artists open up their homes to complete strangers across the city. You can drop in to any artist’s home and look at the art – everything from portraits and landscapes to jewellery, sculpture and digital art. I absolutely loved it – the explosion of colour, the beauty and realism of the paintings, the intricacy of the digital art that made 2D faces jump off the page. Best of all, while talking to the artists and finding out the individual stories behind their art, I wasn’t focusing on my painful arthritic hands, knees and hips. I was distracted for just a few hours out of the day, but what a wonderful afternoon and I’ll definitely be going back for more inspiration tomorrow. It’s been about 5 years since I last painted but I’m feeling ready to pick up a paintbrush again for the pure joy of it.
Yesterday, when I went for a physiotherapy session, I was offered the chance to try hydrotherapy. As luck would have it, although there is normally at least a 4 week waiting list, amazingly a slot was available the same afternoon. So I turned up a few hours’ later and got into the pool with the physio and one other female (older) patient.
Being immersed in hot water relaxed my joints immediately. The water was warmer than I expected (about 34 degrees celcius). Our physio spent time with each of us in turn to run through exercises, which we practised on the spot. One of these was ‘cycling’ while sitting down on a special underwater seat; another involved walking from left to right while holding the bar. I have a tendency to over-extend my joints (due to hypermobility) so had to work hard to avoid that. By the end of the session, I was exhausted as you don’t realise how much energy you’re using up just doing what initially seem like simple exercises. At the same time, it was fun and we had one or two laughs along the way.
Although it’s too early to say what difference it’s made, my joints did feel less painful while in the pool and I did feel better afterwards. As I’m waiting to go on another drug (Sulfasalazine) which won’t be for another few weeks (I need to have an MRI first), it will be interesting to see what impact this treatment (and other non-drug options) have in the meantime.