The MS decade

I’ve realised I found it useful to write a blog annually summing up my year. MS can be so hard to measure distinctly, it’s not that kind of disease with obvious benchmarks, more like a creeping weed which starts as an annoyance but before you know it is obscuring the light coming into all your windows and trapping your doors closed. Ultimately, this is the decade where I became disabled. I was diagnosed in 2006 at just 16 years old (and probably had the condition for a few years pre-diagnosis), but it kicked in and started affecting my writing, walking, and energy from 2013, and I’ve had relatively little reprieve from progression since then. 2019 has been another difficult year:

• Only 18 months after my last social care crisis, I was yet again left with no carers able to visit me. My former agency were short staffed, and the council couldn’t find anyone to take on the work. It felt like all my efforts from the spring of 2018 had been wasted, and I had to start again. So once again I contacted the council, my MP, charities, and journalists, and found myself reappearing on BBC2’s Victoria Derbyshire programme. I’m so grateful to them for featuring my story, and the large response they received on social media was comforting… I’m not making a fuss, it’s just those unaffected don’t realise the extent of inadequacy in our social care system. It worked, and a new agency was found, but am I going to have to battle through this my whole life?
• Two inpatient hospital stays really affected me. The first in May for a serious UTI, the second in October following my catheter operation and subsequent infection. More on that to follow, I’m still getting used to it. Each time my neurologist and MS nurse have said that there should be no change to my baseline strength, that I will recover. But I haven’t. The transition to walking with crutches after my inpatient hospital stay of 2013 (again a UTI) was permanent. No medical professional believes the decline should be, but I’ve learnt from my body, it is.
• So my strength this year has declined, I find it harder to transfer between chairs, in and out of cars, and on and off the toilet. Not only can I no longer hand write, I can’t cut up my food using my right hand any more – I have to ask friends or waiters to do it. I now use voice dictation software at work because my right hand can’t keep up with typing. It means I rely a lot on family and friends for lifting and transferring me around, which I know isn’t fair on them. I’d love to stay hopeful that I can build up some strength, but the reality is that the weaker you get, the harder it is to exercise. I can’t exactly go for a run or pop to the gym, everything becomes a bigger task… which is exhausting.
• Despite all this my mental health is better. I completed nine months of therapy with a psychologist, specialised in chronic illnesses. I’ve seen counsellors and mental health professionals in the past and never got very far with them. It was a real breakthrough this time, to speak with someone who I respected, and whose approach worked for me. I spent a year taking antidepressants while going through the sessions, and it was hard work – it’s not something you can go into passively. It of course doesn’t make MS any easier, I still cry, I still get scared, and that’s not going to go away. But I guess I’m more able to stop those feelings corroding every day.

A great antidote to all the scary unknowns was getting my first tattoo a few weeks ago. I’d liked the idea of having one for ages, and hesitated over the permanence of it… Having a catheter fitted was the final straw. Do I like any of the permanent changes to my body so far? Have I chosen to use a wheelchair? I know it’s only been a few weeks but I adore my tattoo, designed and inked by the amazing Jannali Hepple while she was last working in London. It’s a little piece of my body which I’ve chosen to change, and that makes me happy. The positioning on my left arm is deliberate, long time readers will know how I’ve whinged about any remaining muscle I have migrating to my upper arms, my left arm in particular, as the right becomes more useless. I should not complain about any part of my body being strong, I genuinely know that. But again, now there is a part of my arm’s appearance which has been chosen by me, and that feels great. As for the pain, it is nothing compared to the shooting nerve pain which flares through my neck and arms, or even having a cannula badly inserted (I’ve learnt which nurses to avoid on my monthly Tysabri infusions), to the extent that I nearly fell asleep on the tattoo table.

It’s hard to imagine how my MS will progress over the next ten years, or the ten after that. I know it will, it’s one of the few certainties I have, but trying to predict which limb or sense will be next affected, and when, is impossible. Which all sounds morbid, but the reality is that all I can control is trying to do as much of the things I like: travelling, and seeing friends and family. So I’ll try and fit as much of that into the next decade as possible, The rest will happen when it happens… and I’ll let you know.