If 2015 was the year of blogging about my myasthenia to try to figure out if there were any patterns and what my body responds to, what was the theme for 2016? I’d say trying to forget that my MG exists.
After writing a blog every day for a year, I was fed up with MG being the third wheel at dinner and Elaine was definitely fed up with competing for my attention. So in 2016 I took some space.
How can you take space from a condition that impacts many things in your life? I’ve found that with the less stressful life I chose to live in Edinburgh I rarely felt symptomatic this year. And when I did, I’ve learned that listening to my body – normally that means rest – is the quickest way to feeling normal again. So it’s been less of a big deal.
I also took a step back from MG charity Myaware due to the less active community in Scotland. So other than the morning medicine ritual and the monthly blood tests, I found myself rarely thinking about it.
While I know that means I had a very blessed 2016 and there will be other years when MG plays a leading role, having it as a bit part meant I’ve been able to focus on other things this year. Writing creatively, climbing mountains, getting outdoors as often as possible, reading like a fiend…
Looking forward
If 2016 was quiet on the MG front, what does 2017 look like? It will all depend on how the next 3 months go. Let me explain.
I had been feeling less symptomatic for a while when I had my first visit to my new Scottish consultant in late summer. As my aim has always been to get off the immunosuppressants, I decided that now was a good time to test how my body would respond. To my delight (and shock after previous experiences), the new guy was more than happy to oblige my request. So at the start of December I was finally able to start reducing the aziathioprine by 25mg each month with the aim of being completely off them within 3 months.
Each time I reduce my dose, I’m sluggish and exhausted for the first week as my body adjusts but then it goes back to normal. I’ve found that pattern repeated with all reductions and am now half way to freedom.
I’ll probably be blogging a bit more this year – firstly about coming completely off the immunosuppressants and then about travel and MG. That’s because after fighting to get healthy, I’ve got some big adventures planned for this year…and I have no idea how my body will react. Stay tuned for more details.
365 days of myasthenia 