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A life unexpected: Karen Cripps on living with CFS
Sunday 4 November 2012
A life unexpected: Karen Cripps on living with CFS
Today in the Speakeasy, Karen Cripps describes how a diagnosis of Chronic Fatigue Syndrome (CFS) changed her life - in some unexpected ways...
Eight years ago life changed overnight for me: one day I was living a fast-paced life (think big corporate job, studying MBA part-time, gym bunny, busy social life), then the next my body just stopped - and stubbornly refused to start again.
I was eventually diagnosed with Chronic Fatigue Syndrome. Armed with my diagnosis, I went off in search of answers. I wasn't very impressed about being so unwell, but I was sure that with the right focus and determination, I could beat it. (Oh, how naive I was.)
You see, here's the challenge - there is no conventional treatment for CFS. It is a complex, multi-faceted illness (it is essentially an umbrella diagnosis for a whole range of symptoms) and there are still more unknowns than knowns within the medical profession. But in my research I read that some people did get better, and I was determined I was going to be one of them: I had always got good grades as a student, I'd been good at my job, I was damn well going to get an A for getting well.
As conventional medicine did not have the answers for me, I began an interesting relationship with alternative health, something the old me would have turned her busy corporate nose up at - but desperation can show itself in strange ways. Over the years I have tried many, many holistic treatments, some bordering on the crazy (crystals, anyone?). But sitting back - or rather lying down - and just waiting for a miracle to occur never felt like a palatable solution.
At first, one of the hardest parts for me was not being able to work. I had been so career orientated, and it was such a huge part of my identity, I felt bereft without it. And it also meant becoming financially dependent on my husband, Mike; I had always been so fiercely independent, I struggled immensely with being a 'kept' woman.
As time went on I adjusted, because essentially humans are adaptable, and you just get used to a new normal. And I recognised how privileged I was to have someone to support me - both emotionally and financially. If it hadn't been for Mike, I would have had to move back with my parents (not something on the life plan in your mid thirties!).
The severity of the illness fluctuated from one day to the next. Sometimes I could manage to lead a small life. Then other times, I would be hit by such extreme fatigue, that I would struggle to move from the bed to the sofa, and spend weeks stuck at home, mainly horizontal. But, believe it or not, I am one of the lucky ones: some people are bed-bound for many years with this illness.
I learnt to grab the moments when I didn't feel as awful, and soak up as much life as possible. And those points of respite kept me going; I honestly don't know how I would have managed without those breaks.
The other point of sanity for me was travelling. When I first became unwell, we didn't know what was wrong (it was about twelve months before I got a diagnosis of CFS), so we took off for six months in a motor-home round Eastern Europe; we thought the change of scenery would be good for me. Unfortunately, it didn't make me better, but it was an amazing experience (especially getting married in Slovenia - aaaah). And the great thing about the motor-home was that there was a permanent bed with us, so a lie down was never far away.
It also gave us a taste for travel, and despite my health challenges, we have travelled extensively over the last eight years (including Argentina, China, Iceland, Israel, Japan, Jordan, Malaysia, Morocco, Russia, and Vietnam). It's been a way of having shared experiences outside of the illness, which has done its best to dominate both of our lives. But I could only cope with these trips because Mike did everything for me: all I had to do was turn up, and to be honest, sometimes that was enough of a challenge! It would take me a week just to pack, doing a small amount each day. Then once we got to our destination I would have to take lots of rest. It was always a lot of effort, but it always felt worth it; a way of reclaiming some life from CFS.
Then about three years ago my health started to improve. I wasn't well enough to cope with going back to work, but I wanted something to focus on outside of the illness. I fancied giving writing a go and I set up a blog - it was quite simply love at first post, and I have not looked back. I treated my blog as a writing apprenticeship and used it as an opportunity to develop my skills as a writer. As my writing improved I started writing for other people too (lifestyle, travel, personal development) and if you catch me on a brave day, I even say out loud 'I am a writer'.
This may have not have been the life I had planned, but it has certainly been an interesting experience. I won't lie, there have been plenty of dark moments when I have thought I'm not going to make it. But I have never thought why me? Why not me? And I always knew it could have been worse: there are plenty of more severe illnesses out there.
And at the risk of sounding like a self-help cliché, I am happier because of this experience. In a situation like this you are forced to get to know yourself in a way which changes you - hopefully for the better. And I have also learnt to appreciate the small things in life, things I was too busy to even notice before.
My health has continued to improve (as has my writing - I hope!) and I have decided to give it a go as a freelance writer. Starting a new career at 41, unexpected, yes, but also rather wonderful.
You can read more from me at The Reinvention Tour
The above, with comments, originally appeared here.
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