My pain story began when I was about 14 or 15. My wrists and thumbs were causing me agony, my joints would click out of place and lock and I had pressure points on my forearm that we incredibly painful to the touch. I was sent for physiotherapy and ultrasound treatment. It didn’t work and made it worse. They gave up. I struggled through hours of GSCEs with horrendous writing and somehow still did quite well.
My memory fades a little after that until I was 16 and an office junior. My shoulders became so painful I felt sick. They too would lock and click, I could barely lift my arms up and working at a desk made it worse. The GPs said it was psychological and sent me on my way with big pink painkillers.
A few years later I was in more agony than before, and it hurt to put pressure on my hips. The GPs decided because I was so underweight (not through choice, I ate anything in sight, including my families leftovers from dinner!) my joints weren’t supported and they were blistering. I was sent on my merry way again, this time without painkillers.
By the time I was 25 I was living in Brighton and working in the most depressing job possible. I often went into my own world on my walk home from work as an escape from the draining experience that was every day. It was North Road, I looked twice, the traffic had stopped, nothing was coming, I stepped out into the road, next thing I know I was lying on my front looking at my glasses that had been thrown down the street, and my shopping underneath a big white van. I had been hit by a high speed bicycle who had no intention of stopping at the red lights 10 meters away. The bike and it’s rider landed on top of me. The bike was bent and ruined and I was lying in the middle of the road with traffic moving around me and a huddle of wonderful strangers – off duty nurses, The British Transport Police and lots of lovely passers by. They got my glasses for me and called an ambulance. I could hear the sirens for what felt like half an hour while the ambulance was stuck in traffic.
I was the third person that day to be hit by a bicycle in Brighton and attended to by that crew. They told me it was a miracle nothing had been broken. They checked me out, told me I’d feel like I’d lost in a rugby match the next day and sent me home in a police car. There was nothing a hospital could do. The injuries came out of the next couple of days and I still have scars from the massive bruises around my pelvis. I had tyre marks down my entire leg, my elbows and knees were cut and swollen, I was in shock and I felt incredibly awful.
I assumed within a few days I’d be better. But the pain never went away. That was three and a half years ago. Now, my pelvis cannot take any pressure at all, my shoulders are constantly in agony and as the years have passed my knees have started popping out of place, my back has given up and I am exhausted, weak and very unwell.
It took 6 months to diagnose fibromyalgia, and I realise this is quite quick in the fibro world, but that 6 months of testing and ruling out a large number of awful degenerative conditions was a scary time. In the end my rheumatologist told me as I did not have a degenerative condition, he had more important people in his waiting room to attend to and discharged me back to my GP. I’ve seen about 12 GPs since then, few of them know what to do, or really seem to care.
I finally saw an on call GP a few weeks ago who prescribed me pregabalin. While my sleep has dramatically improved, the pain has not. Another on call GP this week referred me to pain management. I’m sad it’s taken over three years for this referral, but overjoyed someone listened to me after all this time.
I have dabbled with mindfulness and meditation and recently starting practicing about 5 times a week to help me relax and cope with the pain and exhaustion. I’ve also taken up yoga which helps ease the tension in my muscles and is slowly building up my fitness again.
I used to run 5k and 10k races for Cancer Research, I was accepted into the Territorial Army, I spent hours on the running track at the gym and I walked everywhere at high speed. Now I have a bus pass and take the bus for just one or two stops.
I now volunteer for FibroAction as an admin assistant. I also work 30 hours per week and I am half way through a degree in politics with the Open University. I;ve written some of my best assignments from my bed! I can’t garden any more so I bring home fresh flowers from the market every week. I couldn’t mix cake mixture so I bought a pink mixer. I can’t always cook so I ordered in some meals. I’m slowly but surely finding ways around my illness despite it worsening.
My latest project is an online stationery shop http://www.trinnys.co.uk, and this will also feature at Brighton Open market during warmer months. This may be the key to working from home, in my fluffy pjs, cats by my side and laptop in hand. So even if it’s a bad day, I can still get to work.
So there you have it. My pain journey has probably only just begun, it’s ever changing, and I remain ever hopeful.