The name should have said it all, really. Except it didn’t. Or not to me, anyway. They explained back when I first got my diagnosis of Multiple Sclerosis (MS) eight years ago about how my variant was something called ‘relapsing – remitting’; I couldn’t help noticing how the doctors who told me looked relieved, almost as if that was good news.
Why would anyone be pleased about anything so s**t as having MS? Unless they were sadists, but they’d all seemed so kind…
Pizza and dodgy memory
Of course, after I learnt about having MS I didn’t take much in, just went home, cried, raged about it to my husband, cried some more, had a cup of tea, washed my face and tried to make the evening meal. Except I couldn’t. I was no longer strong enough to lift an empty saucepan, let alone one full of boiling water and pasta, especially not with children running around the kitchen at the same time.
We had take-away pizza that night, even though we were worried about money, since I’d also lost my job (the illness damaged my memory and made me repeat things I’d said just moments earlier). Had I been drinking, my boss asked doubtfully? No, it was the MS attacking my memory neurons, I replied. He looked even more doubtful. I couldn’t blame him. They didn’t renew my contract. I didn’t fight it.
In the middle of all the turmoil and illness, I didn’t understand why the doctors had looked so relieved about me having this ‘relapsing-remitting’ variant of MS. Having any type of the illness at all felt hard to take in or accept.
Over time, I’ve learnt, though, that with this type of MS some recovery should be possible. Is possible. First, you have the relapse itself, which for me and many others meant blindness, urinary accidents, inability to stand up for more than a few seconds at a time, other humiliating bodily malfunctions too embarrassing to detail.
But then, if you’re lucky, the illness takes time off, like an extended mini-break for neurological illnesses, or the office temp leaving for another job – the “remitting” part. If you’re lucky. ‘Remitting’ may sound like an old-fashioned type of banking, but in this case it’s when the symptoms of your MS get better, (your sight comes back, you stand up unaided, remember your husband’s name unprompted, make it to the loo okay). Or they even disappear altogether. True, the authorities won’t let you drive again until you pass a battery of visual tests, but life starts to feel closer to ‘normal’.
What I didn’t fully understand in the beginning was that recovery doesn’t happen at all for the unlucky one in ten people (including cellist Jacqueline du Pré) with ‘primary progressive’ MS.Meaning the kind that gets steadily worse from the start. Without any let-ups. Or breaks. Just more types of disability. And worsening of the problems people have already got. When I was younger, function came back on its own after an attack, without me having to do anything much except struggle to be patient. It took a while, though. With this ‘relapsing-remitting’ lark you lose function almost overnight, but it takes months to get it back.
This time, I’m having to work a lot harder to regain function, partly because I’m older now. Which is why you might see me around, pushing my snazzy new Zimmer frame (a contradiction in terms?) that these guys lent me.
Gentle exercise is working, at least up to a point. Back in January I could make it only as far as the post box at the end of our street – on a good day. But by mid-April I’d built up enough strength to make it all the way round the block once a fortnight. Now we’re in mid-May, I’m managing to do that circuit most days, though it can still be a struggle.
Okay, recovery may never mean walking much further than round the block. I won’t be running anywhere any time soon. But the fact even a little bit of recovery is possible makes me want to cry when I think about it. So I took these pictures on my daily trek yesterday to celebrate.