I haven’t blogged since December 2014! How did that happen?!
Mostly, it’s because I’ve been too busy, rather than too ill. I’ve been loving my work at Manchester Mind, though it does keep me pretty occupied and sometimes a bit stressed too. However, the fatigue and flares have been manageable, and I’ve not had to take any time off because of my arthritis so far. I’ve continued to stick to the gluten free diet, though I’m finding staying off the sugar slightly harder to stick to these days. Overall, however, I think I’m doing okay.
I’ve even managed to start trying vigorous and athletic styles of yoga and been shocked and amazed by what my body is actually able to do. I’m building up my upper body strength and even managed a headstand unaided at last week’s class.
So overall, life with PR is pretty positive at the moment.
But what I did want to write a bit about is a new development in my work which I’m pretty excited about.
Living with palindromic rheumatism – or any type of chronic condition – isn’t just as simple as living with the physical symptoms. The flares, the pain, the restrictions and the fatigue also have a psychological and emotional impact and this isn’t often taken as seriously by medical professionals. When the consultant asks how I am, he is interested in how bad my flares are, and whether there’s any joint damage. He’s not generally asking how I am coping with my PR. Coping with the unpredictability, with the chronic pain, the lack of sleep, and the fatigue isn’t always that easy. I think that sometimes the psychological and emotional impact of the condition can be even harder to deal with than just the physical symptoms. A friend with rheumatoid arthritis told me that she wished she was told when she was diagnosed that it wasn’t just a physical illness she had, but a mental illness too, its psychological impact has been so profound at times.
More than once, I’ve phoned the rheumatology nurse, or Arthritis Care Helpline in tears. It might have been after a disastrous appointment with a consultant who hasn’t taken my symptoms seriously or just during a long flare when I’m at the end of my tether from lack of sleep and constant pain. The early days were particularly stressful and upsetting – when I didn’t know what I had, what to do about it, or what was going to happen to me. I didn’t have any coping skills, and it felt as though no one really ‘got’ what I was going through. It took 8 years before I was even referred to a pain management clinic – by which point I’d already learned the most useful tool I was ever going to learn – meditation and mindfulness.
Life can be stressful enough without a chronic condition, but throw in an unpredictable and little understood invisible illness which causes chronic pain, disability and fatigue, and stress increases massively. I can point to plenty of different stressors. There’s the frustration of not having any effective pain relief when I’m flaring. The stress of the pain and lack of sleep. The disappointment and frustration of having to cancel on friends, or having to take to bed from fatigue. Even people trying to help by offering ‘helpful’ suggestions or commenting “but you don’t look ill” can be a frustration and a stress. There’s also the stress of the financial cost of living with a long-term illness, and in the current economic climate with a whole raft of disability benefits being cut, this is a huge stress for a lot of people.
In the early days, I was often very low, worrying about the future or giving up on certain dreams. Sometimes I still spend a lot of time just wishing I didn’t have this stupid darn condition. Of course, wishing things were different uses up and wastes a lot of energy, and it’s something that happens much less since I discovered mindfulness. But it’s still something that I have to revisit time and time again and work on – the transition from resistance to acceptance. After all, why wouldn’t you wish you didn’t have a lifelong condition that probably wasn’t going to be cured?
One thing that’s been really rewarding for me over the past year is my job for Manchester Mind, which is running a ‘resilience’ course for people with diabetes or heart disease. The course teaches people cognitive behavioural and positive psychology techniques and introduces meditation and relaxation and stress management techniques too. It has really helped some people and I’m really excited because now we’re going to be offering the course to people with arthritis too.
I think this is hugely important. We don’t get taught these skills at school, and unless we are referred to a therapist or counsellor by our GPs, or gone of our own accord (not always affordable for many people), we don’t learn them as adults either. We don’t get taught the importance of relaxing and of deep breathing, and we don’t learn that we don’t have to believe the negative self-talk that can often drag us down into a pit of depression. We don’t learn that accepting pain and illness can be more beneficial to our mental health than trying to resist it. (This doesn’t mean giving up – a longer post is needed to explain this more fully!)
Teaching people these techniques and seeing them learn from each other, and integrate relaxation and meditation into their lives hasn’t just helped them cope with their conditions – it’s helped me with mine. And it’s not a case of such courses or techniques only appealing to a certain, narrow age range. The youngest person I’ve had on the course so far, is 20, the oldest 89. They’ve pretty much all said that they’ve learned something and it’s helped them in one way or another.
Thanks to some additional support from Arthritis Research UK, from July Birmingham Mind, and Manchester Mind will be extending the Building a Healthy Future course to anyone with arthritis. It’s completely free. It won’t make your pain or your fatigue disappear, but it will help you cope with all the extra mind stuff that comes along with a diagnosis of arthritis.I’m so happy to be involved and know that my work can help people with diabetes, heart disease and now arthritis too.