Relapse on the Horizon

Here's one I wrote earlier:
(Ironically, the relapse never actually arrived and I remained on the "plateau" til October.)

23 August 2006

It seems I’ve reached the end of the peak. Since the last relapse I’ve struggled to return to the blessed plateau of “health” (relatively speaking) where I can squeeze that little bit more out of life. I glimpsed another chink towards freedom. Now I’m crying inside at the thought of the little extra things I’ve been doing these last 3 or 4 weeks that I don’t be able to do a again until the next peak – next year sometime? Go to Costcutter with Sofia in the pushchair. Drive her to the park, and sit on a bench while she chases the birds. Cook dinner for us all. Manage Sofia all by myself at lunch time instead of always having to be helped by my parents. It wasn’t easy. All those things used up all my strength. But now it seems they’ve slipped away over the horizon completely.

I can’t stand the thought that these miraculous moments are just occasional blips in the unending cycle of relapse and remission. Why can’t my body just stay in that gear a bit longer, and then shift up into a higher gear. What is this awful ceiling that’s stopping me progressing back to health? I was able to carry Sofia for a couple of minutes longer than usual. There wasn’t quite the same tightness in my heart muscle and shortness of breath. It was impossible not to feel a surge of hope. Like that elusive higher gear was just around the corner. I almost wish I hadn’t had that hope. I’ve come to terms before with the notion that I’ll be disabled for the rest of my life. I will have to again.

The ceiling is descending on me again. Not all at once, but gradually. There’s the usual bowel symptoms, the nausea, the tingling down my spine, the tightness in my brain like I’ve been knocked on the head, the loss of power in my limbs, and, most tellingly, the tightening of my heart muscle and the shortness of breath. Like a paralysing injection working its way round my nervous system and my organs, seeping into every blood vessel. Like my body going into hibernation.

But I have to celebrate all that happened during the peak. I swam with my little girl in the Italian sunshine. I held her in my arms, for what seemed like hours, because the water bore her weight for me. I cradled her while she splashed and spluttered with delight. It was heaven. (Why didn’t I think of that weightlessness in water effect before?) We sat around idly by the pool with friends: other babies and toddlers and their parents and I was Sofia’s mum, just like the others.

And now that we’re back home again we all love each other more than ever. Sofia is learning new words by the day. It’s fantastic. It’s just as I thought, or hoped it would be. That once she started talking that terrible physical gulf between us would be bridged by communication. Now when I’m sitting or lying down she comes to me and asks for a “cuwwoo” (cuddle). She calls out to me, Mummy, mummy mummy! She listens to my every word and learns everything from me about the world. And at last I know for sure that I’m the centre of her universe, along with her daddy, and not just a shadowy presence in the background. I could cry with relief to know at last that the bond between us is real and strong and just like normal mums have with their offspring. For all those times when it felt like my not being able to carry her close to me caused a chasm in our relationship that couldn’t be bridged by words. At last I’m starting to feel more whole as a mum. I’m so, so glad we embarked on this adventure. It’s really paying back a thousandfold for all the hardship and the heartache that we’ve put in.

And no matter how deeply I sink into this relapse, Sofia wakes up bright eyed and bushy tailed every morning, calling out for me and filling my heart with love.