Soon after my diagnosis of multiple sclerosis (MS), I realised that life was now all about give and take. I was giving up everything, MS was taking. Not only that, I was navigating a whole new world without a map – there was a new, complicated neurological language to learn, consultant etiquette to decode, reams of legal advice about my work status as a disabled person to wade through, and so on.
As a stranger in a foreign land, I desperately needed to take a step back and a very, very deep breath. One day, at an appointment with my MS nurse, she turned in her chair after tapping away at her screen, looked straight at me and asked, ‘so how do you feel, not physically, but in yourself?’ I had no answer. Nada, nothing. I didn’t really know as it was all so overwhelming. After I dried my tears and used up the rest of her tissues, I left the clinic a different person.
I was heading home to find a large sheet of paper and write down every single way in which my life had changed and how I was dealing (or not) with it – I wanted to reflect on just where my life was headed and how I could make it better.
Researching self-reflection was an eye-opener. I knew most of us do it anyway as a matter of course, but without really thinking about it. Something good happens, we try to do the same the next time to get a similar positive outcome. Likewise, if something not so good happens, we ask ourselves why and what could we change the next time. And that was it. Except now I was going to actively self-reflect.
It reminded me of running a business and working out profit and losses every year, so I was going to do the same thing, although in an empathic and caring way – it was time I started looking after myself with a lot more compassion and much less anger and despair at how my life had turned out.
One of my first active compromises, after drilling down into my life with MS, was to donate all my heeled shoes and boots to my friend. Foot-drop put an end to them and I stubbornly held out as long as possible until I fell downstairs for the umpteenth time. I mourned deeply, feeling unfeminine, boring and frumpy. So I treated myself to a stupidly-expensive pair of beautiful flat ankle boots and never looked back. They’ve become my trademark.
Next, I realised that I was spending more and more time at home, on my own, while the world went on outside my window. I rarely drove, walked much less and my confidence had all but shrivelled up and disappeared. I felt bruised and battered by the MS Storm. I mulled this over on my blog and the responses and support I received spurred me into action. I started small, popping out for coffee with a friend now and again. Or having a friend to my house to share a bottle of wine and commiserations at the weekend. I might not have been back to the cinema yet (neuropathic pain in my legs) but I got out and about in other ways.
Before I knew it, I was demanding more, from myself and from people who could help, such as my GP, MS nurses, my consultant, my friends. The assistance was there if I wanted it, I just had to ask. Perhaps that was the biggest hurdle; I was always fiercely independent and loathed asking for help.
However, not everything turned out so well and I had to accept there was nothing I could do to improve certain aspects of my life, despite everything. I suffer very badly from MS fatigue. I’d been sent to a Fatigue Workshop which was fantastic and provided tips, but no solutions. So I demanded more and asked my consultant for treatment. Sadly, I reacted badly to it and had to stop taking it. Again, I wrote about this on my blog and through writing back and forth, I learned to accept that fatigue is just part of my life I have to come to terms with. I’ve since altered my daily routine to fit around it and I’ve identified my biggest trigger points, and compensate accordingly.
Yet there were many more victories than losses when I started asking for more, and I discovered ways to improve my life on every level; I went back to University and took a Master’s degree. This would not have been possible without me asking for help, having support put in place by the University and discovering that it was okay to admit I needed the help. I always joke that it took me plus eight people to complete the degree, but it’s true. And now I am an Academic Associate and taking a Research PhD, again with a whole team of people behind me.
Self-reflection is now a useful addition to my life; I don’t know about you guys, but it starts from the minute I wake up – how is my MS today? What challenges will I face? It’s such an unpredictable illness, but sifting through my emotions helps me keep on track.
There are good days and better days. Or to flip the coin, bad days and worse days. It’s all a matter of whether I wake up on the right side of the bed.
If you can take away one point from me, please take time to nurture yourself. MS can be cruel and devastating. Self-care is vital, and reflection is a part of that. Reach out, ask for more support if you need it. No one need go through MS alone and I wish I had realised that a long time ago.
Like Barbara, challenge your perceptions and reflect on the compromises you may be making to accommodate your MS with help from our game of Truth or Dare.