In 2015, my extra flexible, wobbly joints took a turn for the worst and after over a decade of unexplained pain & weird injuries I was diagnosed with Ehlers-Danlos Syndrome. EDS is a genetic condition where faulty collagen means our connective tissues (tendons, ligaments, skin & internal organs) don't function as they should.
For me, this now means my joints shift out of place daily and on bad days fully dislocate. My worst affected areas are my pelvis, hips, knees, spine & digestive tract, although my shoulders, elbows, & hands like to join in the party.
During an assessment in 2015, my husband was told to watch my mental health. "She'll hit rock bottom" he warned. I laughed this off because after all, I was in control & had a plan. Despite everything, I was still working and had no intention of stopping.
Then over the Easter Holidays I realised that the kids and I hadn't left the house in three days. They wanted to ride their bikes, but I couldn't keep up with them in my office spec powerchair (perfect for keeping me at work, not so great for getting out & about). They were amazing about it, offering help where they could and amusing themselves even though we couldn't get out to see their friends. It was at that point that I realised that :
- my muscles were wasting without the physio that I had been asking for (there is no long term or rehab physio available locally, only short term for 1 body part, & the specialist unit is currently closed to new referrals)
- my independence had become minimal. We weren't going out for fear of getting stuck on a kerb, or me tipping on a camber on the pavement.
- my pain levels were skyrocketing (perversely, not exercising my core & upper muscles in a manual chair makes my neuropathic pain much worse)
At that point, having not seen friends for weeks and with pain levels I couldn't control, I sat and cried (you'll know this is highly unlike me). My rock bottom was a realisation that whilst I'd made sure everything was in place for me to keep working, 6I'd entirely overlooked my reason FOR working. Family activities like cycling along the seafront were over. Unless it was swimming, I was now a spectator. My pity party for 1 lasted several days until I discovered Team Hybrid. Their clip on hand bikes ticked every box I could throw at them:
- independence. - improved fitness. - battery power for bad days/ incline. - standard bike wheels (on & off road tires) - unclip manual chair to allow mobility at other end of journey
So what's the catch? Why not just buy one? So yeah.... There's the catch. A standard pushbike is a few hundred pounds. The handcycle alone is £2995 and it requires a rigid chair which is a further £1300.
We're saving as much as we can & I've applied to our local wheelchair service for help, but it won't cover everything.
I never thought I'd be running a fundraising campaign for me, but there it is. I've gone from independent woman in my car, to me in a chair asking for help up a ramp. I'd like to restore the balance this summer.