I have a list of potential blog-posts somewhere, but have been putting off writing them because I feel like I should start by bringing you up to speed on my present situation. Of course, speed isn’t really my forte these days, so it’s taken me a while to write this little background piece. I hope you’ll bear with my snail-paced postings (maybe I can spark a slow-blog movement?).
Last October I found myself unemployed, and the Wellington public service grapevine came to my aid; an ex-colleague had a month of work for me. The timing was excellent, as I had a few weeks to kill before starting as a volunteer ranger on Matiu/Somes Island for the summer. The work seemed simple, basically just sorting and shifting papers, which sounded heavenly after the stress of working at Corrections. As it turned out, my ‘simple’ summer job consisted of a lot of lifting, a lot of standing, and a lot of repetitive strain. After a couple of weeks my back, shoulders and neck hurt so much that I had to quit.
At first I thought I just needed a bit of rest, and that I’d soon be ready to trot off to the island to start searching backpacks for possums. But after a couple of weeks, I realised wouldn’t be trotting anywhere. In fact, I was struggling to stand, walk or sit unsupported for more than a few minutes. I couldn’t make a cup of tea, hold a book or write an email without the pain returning.
I had an sinking suspicion that Muscular Dystrophy had a role to play in all of this. Fascioscapulohumeral Dystrophy runs (well, walks) in my family. My Mum has it, and my brother Dave has been pretty badly affected since he was at uni. I’ve always had a weak shoulder, but never had cause to think about it much until recently. I was examined by a neurologist in February, who concluded that my symptoms + our family history = FSHD. Probably. I’ll know for sure after genetic testing later this year.
There’s no treatment for FSH, and no way to tell whether or not I’ll get better. There have been times over the last year when I’ve improved and gained strength, but I always regress and lose it again. So I’m learning to slow down, limit my physical activity and rely much more on other people and mobility equipment. It’s incredibly frustrating, but it means I can mostly keep the pain at a manageable level.
The last year has been a bit like a game of snakes and ladders, with a few Chance and Community Chest cards thrown in for good measure. Sometimes it feels like I’m always landing back at square one. But at least now I know that the ladders aren’t wheelchair accessible.
This thing's got legs 