My journey with chronic pain...

I’ve had a complicated relationship with my health. It’s been a journey, and one that I’m still navigating. Here’s an introduction to my story…

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As a kid, I often had sickness bugs, headaches, and generally felt like I was ill a lot. Throughout my teens this was very much the theme, but I was mostly able to get on with things relatively normally. I had issues with very low moods and depression, and I had aches and pains all over, but nothing that couldn’t be chalked up to ‘growing pains’. I needed glasses and an inhaler, and I had eczema and allergies, but I managed ok.

In early 2009, having just turned 17, fresh out of both school and my first (terrible) office job, I started an apprenticeship at a nursery, a breeding ground for bugs and the like. Within 2 weeks I caught a chest infection, and within 3 weeks I had chickenpox. I’d never felt so ill, and, not to be a dramatic teenager about it (I definitely was and sometimes still am), I thought I was dying. I spent weeks in bed and was unable to leave the house, I was fired from my new job and apprenticeship, and I felt pretty shitty.

Over the next months, I felt like I couldn’t quite get back up to par. I caught a lot of colds, felt tired a lot, and just generally had no energy. I eventually managed to get a part time job, and then applied to college to study music, but I had a lot of time off sick and no one could really put a finger on why. I had digestion issues, terrible hormone and period problems, and I couldn’t concentrate much on anything.

Countless visits to doctors and lots of Googling my own symptoms later, I was diagnosed in 2010 with PCOS (Polycystic Ovary Syndrome) and IBS (Irritable Bowel Syndrome). I felt some relief that there was an answer to my problems, but oddly, I didn’t embrace the idea that I had any power in treating them. When I saw specialists, I was hesitant to take responsibility for my lifestyle and I pretty much stuck my head in the sand. I generally abused my body for the next year or so, partying and being generally irresponsible as a lot of 18 year-olds do.

In 2011 I started my degree. Within the first term, I started getting migraines, I was struggling to wake up in mornings, I would often collapse feeling like my legs were jelly, and my eczema had flared up to the worst it had ever been. It was quickly clear that I wasn’t coping very well with university life, and by the end of the second term I was relying on a wheelchair. To my family and friends, I think it was a fairly dramatic decline in my health. It was around this time I was diagnosed with M.E. (Myalgic Encephalomyelitis), C.F.S. (Chronic Fatigue Syndrome), and multiple chemical allergies. I had been fighting against the ‘it’s all in your head’ comments from doctors for so long, that I think I clung to my new diagnoses with victim-fuelled pride.

‘Cripple’ - my choice of nickname at University…

‘Cripple’ - my choice of nickname at University…

I fumbled through university, relying a lot on support from my family and friends. I tried to joke about or hide my pain as much as possible. At the beginning of my third year I was diagnosed with Fibromyalgia. During this time and until about 2 years ago, I spent a lot of time trying new pain killers and medications. The side effects were often unpleasant or even worse than my normal symptoms, but I clung to the idea that I needed drugs to help me feel better.

After graduating university, I started an internship and worked full time. Within 6 months I had to reduce my hours. I felt like there wouldn’t ever be a time when I could have a ‘normal’ life. I carried on like this for about 4 years. Trying new medications, diets, and trying but failing to understand what I could actually do to improve my health. I went through ups and downs and experienced regular flare ups, but I never really understood the role I could play in my own recovery. My health generally deteriorated until last year when I was experiencing more migraines than usual, up to 5 a week, so in October 2018 I was diagnosed with Chronic Migraine Syndrome… another to add to my list. This one was a shock. I thought I knew ‘what was wrong with me’ and I’d become an expert in living within the confines of my disability.

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The biggest change since that point has been learning about the responsibility I have towards my own body. There may be some things that fall outside of my control, but I have some power in determining how today might go for me, and that in itself is empowering!

Over the years there’s a lot I’ve learnt about my pain, my triggers, and how to live life with chronic diagnoses, but right now, I’m the healthiest I’ve ever been in 10 years, and I’m sure there’s a lot more improvement where that came from. For now, I’m going to write about what’s helped me and what I’m learning on my journey to loving and nourishing my flawed, beautiful body.

Stay tuned folks

Love

Sarah x