In 2012, after six years of joint problems and countless hospital appointments, I was diagnosed with Ehlers Danlos III. A rare degenerative connective tissue disorder, which leaves hypermobile sufferers prone to easy injury, dislocation and chronic pain, along with a panoply of multi-systemic complications. There is no cure.
Initially I was relieved to know what was wrong with me. It had a name. I wasn't making it up. I really was sick. But I was too busy, having left a successful career in the fashion industry and launching my first book, to follow my consultant prescribed lifestyle management plan. I just did what I had time for. Something at work always came up, I hadn't caught up with that old uni friend for ages, just one quick drink wouldn't hurt, and that pile of washing wasn't going to sort itself. But EDS is not a gym membership you can neglect. In April 2013 I suffered a major flare up and dislocated my neck.
I was unable to walk, and my physio's were fighting to get my body under control. Nothing worked. I was in agony. Hours became days, became weeks, became months. My world shrunk to my bedroom. My bed. My head. My whole world collapsed in on itself.
I always thought I was strong: I associated with the person in the films, the stories, the newspaper articles, the one who doesn't give up. The paralysed woman who against all odds walks down the aisle on her wedding day. The starving man who gives his last crust of bread away. The triumph over disaster. The hero. But my EDS III flare up didn't just rob me of my mobility, it stole my personality. I was weak. Frightened. Angry. I understand now why those who suffer from chronic pain take their own lives. When nothing works, nothing penetrates the darkness, there are no Hollywood clichés to fall back on.
After weeks of blurred agony, my physio suggested my husband take me to a swimming pool. Supported by the water my body remembered what it was like not to hurt. For a few minutes the pain eased. That brief respite was enough. I was ready to fight.
It was a long journey. After five months I could sit at my desk and type for one hour, three days a week. The rest of the time would be spent lying down recovering. At twelve months I hit the base level of fitness I'd been at before the flare up occurred. By that point physiotherapy had become a daily part of my life. I paced. I did my exercises. I soaked in Epsom salt baths. I watched what I ate and kept my weight down to avoid putting additional pressure on my joints. I used a walking stick when I needed to. Every action, every step, every movement was tempered by EDS III. I was terrified I'd find myself back in the prison of pain, and that this time I might not escape. But you can't live in fear: it's just another form of incarceration. I kept going, because there wasn't another option.
EDS III almost broke me, but it also made me more capable. Exercising is not about how I look in a bikini, it's about how I walk. Physio is not a tiresome part of my day, it's what underpins my work. Eating a nutritious diet isn't a #wellness fad, it's the building blocks of my daily life. I won't moan that my bruised legs are ugly, I'm just damn thankful they work. I'll put on a blue leopard print dress, and team it with my high top trainers. I'm still me, I just look after myself better.
I've learned to say no. Doing everything risks everything: wearing myself out increases the chance of a flare up. I sometimes see people wasting time on those who take them for granted, or staying in jobs they hate, or being too scared to follow their dreams, and I realise I'm lucky. Having EDS III has taught me you have a limited amount of energy, a finite amount of time: use it wisely. I see friends and family who nourish me. I invest in my writing (my first novel, Follow Me has just been published!), my work, because it brings me independence, happiness, and fulfilment. You help no one if you're mentally or physically wrung out. Be resilient. Be kind to yourself. Bend, don't break. Keep going.
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