It was almost six and a half years ago that I met the Gazelle. Just over six years ago we began to hang around together. A lot. And he is now my boyfriend, my partner, my lover, my ‘bloke’ (as my mum calls him), my best friend.
We called him the Gazelle becuase he was always leaping about, bouncing off rocks, leaping accross rivers, and he seemed to have a penchant for pronking.
Four years ago, the Gazelle was struck down with Chronic Fatigue Syndrome (CFS). CFS is one of those bloody annoying ‘syndromes’ which basically means no one knows anything much about it and it exhibits as a bunch of symptoms that differ between different people.
In the Gazelle’s case, he went from being an active bushwalker, climber, canyoner, cyclist, ‘jump-to-touch-the-roof-becuase-I-can’ kind of person, to being someone who couldn’t walk around the block, cook dinner, or clean the toilet. Ok. Maybe I exaggerate. He could have cleaned the toilet, or cooked dinner. But only occasionally, and only if he saved his energy and sacrificed something else.
When I left for work he would be in bed. When I returned home from work, he’d still be scrunched under the doona (admittedly most days he managed to exit the bed). When he first got CFS I remember being horrified when another CFS sufferer had said “we learned to enjoy watching movies together instead of bushwalking…”. I swore that would not become my life.
Ahem. For a while we spent an awful lot of time watching the BBC version of Robin Hood (thankfully Robin is gorgeous, Marian spunky and the whole thing full of heroism, humour and bows and arrows).
The biggest problem was that the Gazelle could pull himself together just enough to put on a brave face for family and friends. We would go to family lunches and people would say ‘oh he looks tired, but I look like that sometimes too’. What they didn’t realise was that we were going home to deal with a crashed and burnt out shell of a man. Living with CFS means you live with a limited energy budget, when we went out socialising he went into energy debt (incidentally Christine Miserando writes a lovely explanation of what it is like to live with a limited energy budget).
Unfortunately I was the one paying the energy bill. Sure, he could put on a sparkly act for everyone else, but once home he became lifeless, exhausted and completely inwardly focussed. It was like living with a zombie.
How hard it was to explain to family and friends the grief and panic that came with that time in my life. Waking up every morning next to someone angry to be awake, going to bed every night next to someone who was not at all attracted to me and was likely to be complaining of extreme neck tension. The grief at losing the energetic and adventurous man I had fallen in love with was coupled with the incredible imobilising fear of the unknown. Statistics suggested that if you’ve got CFS, you’re fucked. Thank God I am a social researcher and don’t bother with statistics.
To those of you out there with CFS, or loving someone with CFS, let me say this. After four years I can safely say, I would never wish this on my worst enemy.
BUT. What a wild ride. I’ve learned such valuable things and have emerged with a stronger, happier and more grounded sense of myself and my relationship. The ride still goes on and there are plenty of tears, but there is a silver lining and to give you hope, the Gazelle is definately getting his pronk back.
This is just an introduction to CFS and I hope to post a lot more about the following CFS things:
- grief and loss
- survival – what do people mean when they say ‘look after yourself’
- getting better – what helped