Nearly a year ago I found out I have bone erosions in my hands associated with rheumatoid arthritis. I’m having another ultrasound scan in 4 days’ time to evaluate the current state of the disease. (Although I’m not a fan of the word disease, it conveys the seriousness of RA and its chronic, systemic nature). The thought of further bone damage terrifies me. On the other hand, it could be good news. Since June 2013, I’ve tried five different drugs to treat RA (and osteoporosis). Currently, I am on Enbrel injections (twice-weekly), Actonel (once weekly) and Vitamin D (once a day).
What I’m hoping for is confirmation that my bone erosions have stabilised (i.e. not progressed). I know that once bone damage has been sustained, it can’t be repaired, but you can prevent further damage happening if the drugs work. If it turns out I have more bone erosions in my hands than last year it will be distressing. I’m trying to stay positive until I know the results. Once I’m informed, my rheumatologist and I can jointly decide on an action plan to do something about it.
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.
A few months ago, self-injecting Enbrel was the last thing on my mind. The idea horrified me. I can’t even watch while the Phlebotomist takes my blood, so being able to inject myself with etanercept seemed a distant possibility. Fast forward to March 2014, and the situation has changed. Now I see it (learning to self-inject) as an exciting thing as it will give me more independence. This change in attitude didn’t happen overnight. I started to get fed up with the amount of time that I’m spending in hospital (varying between four and seven times a week at the moment – and two of those appointments were related to my Enbrel injections). Rather like learning the ukulele (!), I think of self-injecting as a skill that has to be broken down into manageable chunks rather than trying to do it all at once.
Some people are able to inject themselves straightaway – good for them. But it’s unhelpful to compare yourself to other people. In my case, with a history of PTSD and health anxiety following an allergic reaction to the first rheumatoid arthritis drug I tried, followed by side effects from the next four medications (including Enbrel), it hasn’t been an easy process. For ages, I hadn’t even contemplated self-injecting. It was enough of an achievement to get to the clinic and have the injection. Having said that, just in the past two weeks I have learnt how to a) remove the grey syringe lid (no mean feat when you can’t grip properly), b) gently push out the air bubble and c) plunge the needle in at a 45 degree angle to my upper thigh (while pinching the skin). My specialist nurse had to push the plunger to administer the drug. However, I felt a real sense of achievement from getting this far. Next time, I hope to be able to do the full procedure. I didn’t do a, b and c all in one go – but learnt a new skill at each appointment. My fears have subsided. It wasn’t as painful or as hard as I anticipated. I thought it would be a nightmare watching myself do it (as you can’t look away) – but it wasn’t. Hopefully I’ll soon feel able to self-inject without the nurse present. This is exciting. More opportunities lie ahead (such as working and travelling again) and I can’t wait.
Rather than making resolutions at New Year, I’m thinking of them now. I could wait, but I’m impatient to get started! Top of the list is doing a fun run (or more likely walk!) to fundraise for arthritis research. Finding a new (part-time) job is also a priority, but dependent on finding a new flat. (I’m urgently looking for somewhere new to stay in London by the end of January). I’d like to spend less time in hospital (with hopefully fewer appointments) and have more fun with friends. Most of all, I’d like to get better. That’s not a resolution but I want to keep optimistic. Who knows if I’ll reach drug-induced remission this year? At the very least, it would be amazing if Humira gets the rheumatoid arthritis stable so I don’t develop any more bone erosions. And I’d like to do more painting, jewellery-making, photography and other creative stuff. Finally, I’d like to spend a whole week abroad (something I haven’t done for several years due to illness) and to keep playing the ukulele!
People often ask me what’s it like to have Rheumatoid Arthritis. This is what it’s like. It feels like I have flu everyday, with aching, stiff, swollen and heavy joints that actually crack when I move sometimes. My hands feel as if I’m wearing rubber gloves with padding in them and when I bend my fingers all this extra flesh has appeared from nowhere. They look like Michelin Man’s female companion’s hands (if he had a female companion). Never-ending fatigue, joint and muscle pain day and night. Distorted hands and hollows on parts of my body where muscles are wasting away. Feeling weak and ‘shattered’ constantly.
Previously simple tasks such as getting out of a seat require lots of preparation and effort. Gradually edging towards the edge of the seat, gripping on to the sides, and using all my might to lever myself into an upright position uses up a lot of energy. Standing when about to get off the tube train (or bus) involves holding on to the rail with both hands and trying (and usually failing) to remain rooted on the spot (but this is due to having Ehlers-Danlos Syndrome rather than RA).
Walking isn’t something that happens naturally now. Each step is a slow, conscious manoeuvre and my spongy knees and creaking hips are always painful. My hips and knees feel like honeycomb inside – as if they are hollowing out and becoming unstable – but I don’t know how much of this is mental or physical as I have never had a full body MRI scan and last had a DEXA scan a year ago.
Putting clothes on becomes a lengthy performance as buttons are hard to do up. I’ve actually broken the chain on a necklace twice because I couldn’t do it up properly and took it back to the shop to be told, gently, that no one else had had that problem. I was crestfallen. To their credit, they gave me a new chain each time. I then decided to buy a nifty gadget that fits on my necklace that acts as a magnet and means I don’t have to undo necklaces in the conventional way. Relatives bought me a special plastic ‘flower’ that means I can open bottles more easily without having to ask strangers in cafés or on public transport to help me. I’m on the hunt for other gadgets or innovative ideas to make living with RA and EDS easier and to free up my time to live as ‘normally’ as possible.
This Arthritis Week (7-13 October 2013), Arthritis Research UK is encouraging people to make a ‘Joint Effort’ to raise awareness about arthritis. I’ve been doing that in my own way by talking to people about what it’s like to live with rheumatoid arthritis. Yesterday, on the tube, I got talking to a woman in the seat next to me (about 30 years older) who had osteoarthritis. During our chat, she showed me her hands and wrists, pointing out where she’d had an operation on her wrist and which fingers were particularly affected. I showed her the little finger that I fractured through typing which was clicked back into place while in Paris on Easter Sunday 2012; the effusion on my left wrist; and the accumulation of synovial fluid above my wrist joints, making them appear even more swollen. We agreed that one of the hardest things about having arthritis (whether RA or OA) is that it can be an invisible illness and people don’t always realise.
Then today, at the hair salon, I mentioned it (having arthritis) to the hairdresser. She asked lots of questions – how did I get it? how was it treated? would it just go away with diet? Her last question is a myth that I’m constantly having to bust. So many people think that it will just improve by changing diet, or with exercise, or that all I need to do is pack my bags and go to live in Australia! If it was that simple then no-one in Australia would have it! I’m not angry, just frustrated at people’s lack of knowledge around such a common disease. Although I dislike the word ‘disease’,’illness’ makes it sound less serious, like flu, and doesn’t seem to capture the severity of it. Having said that, I also use the word ‘condition’ so maybe it depends who I’m talking to and how positive I feel about the situation. Ideally, just saying ‘rheumatoid arthritis’ would prompt a ‘yes, I know, that must be tough’ reaction rather than questions about sun and diet. Hopefully things will change, and awareness weeks are a big part of that. One brilliant way to get RA into the public consciousness would be through a soap character, showing their journey (TV word but the best one in this context) from diagnosis to treatment, with readjustment to daily life and managing friendships and relationships all part of the mix. Showing the character experiencing drug-indued remission on screen would also be amazing. Until that happens I’m going to keep talking about RA whenever there’s a chance (in a ‘did you know?’ way rather than a ‘you should know this’ way) but not let it dominate my life. It’s a tricky balance to strike, and at the moment the RA side is beating the enjoyment of life side. With luck, once I start Humira, the balance will be firmly back in favour of ‘having fun’.
Over a week ago I watched an amazing TV programme called Fabulous Fashionistas, following 6 women between the ages of 73 and 90, who were all stylish (in different ways). They shared a positive attitude and approach to life and enjoying it. As 75 year old Bridget said: “I don’t give a damn what people think about me or the way I dress. I dress for myself because I love style and design and colour.” And I wondered whether dancer and choreographer, Gillian Lynne, 87, had either hypermobility syndrome or Ehlers Danlos syndrome because she had such great flexibility, and is still working: “It’s all about having a purpose. And that’s why I think to retire is dangerous.” Her morning routine includes 40 minutes of stretching every day, which makes me resolve to keep going with my physiotherapy routine although my energy-levels are at an all-time low. I thought Daphne Selfe, an 85 year old model with striking, almost waist-length silver hair, summed everything up perfectly: “Enjoy it as much as you can. After all you don’t get a second chance.”
The fashonistas’ ‘joie de vivre’ shone through and it was an incredibly feel-good film. So feel-good that I’ve watched it again, as their energy and enthusiasm for life is inspirational. It’s been a tough few weeks as I’m still in limbo, waiting to start anti-TNF treatment for rheumatoid arthritis (Humira), so I need all the positivity I can get! I’m hopeful that once I find the right drug for me (hopefully this one), I’ll be able to embrace as many challenges as possible – starting with a 5k run.