Long Journey

Today I am half the girl I was, having lost my va va voom to CFS/ME/Fibromyalgia.

4 years ago my life comprised of weekly trad climbing (VS), fell-running and cycling where-ever I could, with weekends, dependent on the weather, windsurfing, caving or climbing and camping, and annual holidays dinghy sailing, hill-walking, canoeing or skiing, with a few triathlons, 10k and mud fun obstacle races.

Living in Sheffield the great outdoors is literally on my doorstep. Being run down by a car in 1998, followed by a back op, inspired me to run. Pilates and physio over the years have strengthened my core and allowed me to slowly return to other activities. Having kids (2009/10) has inspired a different appreciation of the outdoors and the start of an in-house apprenticeship scheme; feeling rock, climbing, scrambling and via ferrata; learning to swim, finding wild spots, feeling the wind and harnessing its power in a kite and sail; coping with cold, learning to balance and control movement on ice and snow. It’s so exciting to watch the next generation start to appreciate what a world of adventure and excitement lies in store.

All this changed when I started finding even getting out of bed tiring, let alone getting the kids to school and working. Priorities and choices had to be made just to survive a day/week/month. I quit working, sleep when I can, be active with my family when they’re free even if it means I pay back with pain and tiredness later when I allow myself to stop; very mind over matter but not sustainable.

 Now I’ve learnt, through mindfulness, yoga meditation and CBT/ACT (cognitive behavioural therapy/acceptance & commitment therapy), to try and pace my energies and be accepting of the new me with all its pain. I can’t change my situation but I can try to focus on what I can do and what I want to achieve with what little energy I have.

It’s been a very long and lonely struggle, losing my ‘active’ friends and social situations as I hide my inadequate, painful and paranoid self away from the outside. My pain (ranging from all-body flu-like heaviness, head clamp, hand/feet cramps and ‘pumped’ shooting pain up my arms) is eased by cold water so I’ve started wild swimming throughout the year. This has introduced me to a completely different appreciation of the outdoors, and I’m loving the temporary energised feeling I get from the water and from being out.

Being outdoors is not as simple as it sounds. Able body and mind people can walk or drive to get somewhere to do something. With pain and fatigue, the effort of even dressing or deciding what or where to go can prevent the step outside. Then there’s the shame and guilt of not being at work or doing something useful; the mental fight is crippling. But I can see the sun from my window, hear the wind roar, watch the stars twinkle and decide not to give up and that with each new day there is something new to appreciate out there and within.