I remember a couple of years ago I was in London, along the South Bank.
It was a place I knew really well from when The Teenager was a baby; I’d walk for miles as he screamed for no reason.
I’d stop at the book stall where he was momentarily distracted by the endless rows of colourful paperbacks, having a coffee at the National Theatre (where he screamed some more), then crossing the bridge and walking past St. Paul’s before making my way home to Shepherd’s Bush.
A couple of years ago, I could barely make it onto the South Bank walkway from the hotel I was staying in. I was stunned and angry.
I had a similar experience yesterday. I’ve taken a taxi to hospital for several years now, despite living very near by. As the driver dropped me off right outside the main entrance, I remembered the days back in 2011/12 when I would park outside the hospital grounds and enjoy the walk.
There is no way I could do that now. When did that happen? Mixed up in having to take a taxi due to parking restrictions, I had lost something.
And it got worse.
From the main entrance to the MS nurse clinic, it was a long, long walk. It took me several stages. What happened? I had my stick, so that helped, as much as I didn’t want it to. There were metal benches dotted along the way and I sank into them and pretended to look at a letter or my phone (no reception).
I was truly stunned. I knew things were bad, just not this bad. My walk has always been wibbly-wobbly since MS. I grab things, hold onto any passer-by (never a single, eligible male, sadly), and bounce off the walls. But this was different.
Despite three courses of Alemtuzumab treatment, there is always that lurking thought that my MS hasn’t quite stabilised (although a lot more than it perhaps should have) but it is definitely getting worse.
Frankly, I’m scared. Is it a slippery slope or will it stabilise? Why does the base-line seem to drop continuously? Am I just getting older? Why does my MS still seem to be rapidly-evolving and highly active?
So many questions. The evenings are getting worse, with the nerve pain ramping up around 3pm. There are many evenings I regret getting rid of the telly in my bedroom.
If I could just sort out the pain in my legs, I’d be happy, but I’m already at the highest limit, 600mg a day of Pregabalin. Arms I can cope with – they simply don’t obey, and I’m used to that.
It’s the legs. My freedom, my everything. I feel like a walking med student map, with all nerve channels coloured brightly and buzzing.
I used to think of MS as a see-saw – treatment, better, more treatment, better – but now it seems like one of those slides kids get stuck on. Good to start with, twig in the way, blip, bit more, then sliding to the bottom …