For me recumbent cycling makes perfect sense. Having PoTS and EDS means that by bodies autonomic nervous system (ANS) does not work properly due to my stretchy collagen (the ANS is in charge of the bodily functions that we don’t have to think about). Human bodies usually automatically adjust from laying to sitting to standing but in those with PoTs this doesn’t work properly causing blood to pool in my lower limbs resulting in an excessive heart rate, very low blood pressure and altered blood flow to my brain. By cycling recumbently my feet are positioned slightly above my hips which allows gravity to lend a helping hand and keeps my blood circulating much better than when I am upright– meaning I can exercise for longer and do not risk fainting (as sometimes happened when I used to ride an upright bicycle!).
Having the confidence to return to cycling after being so unwell was the first major hurdle to overcome. Before my brain surgery in 2009 I was extremely active and used to cycle in and around Liverpool on a weekly basis, often travelling further afield. After being unwell and undiagnosed for such a long time my body had become very unconditioned, my shoulders dislocated when I rolled over in bed and my neck was so unstable that I was in a permenant neck brace.
I spotted a facebook advert for a Hase Pino semi recumbent tandem and the idea of cycling again became feasible. We were living in York and luckily a specialist tandem shop, JD Tandems, was in nearby Gargrave. After a bit of persuasion, I convinced my partner (now husband) Danny to drive us out there and test ride one – I was incredibly excited at the prospect of riding again, especially after watching Danny out on his bike every weekend.
The Pino was unusual to say the least – a semi recumbent tandem with one standard size wheel and one 20-inch wheel, along with a recumbent mesh seat at the front and a regular saddle at the back. I made Danny ride it solo around the shop car park for 30 minutes before agreeing to get on with him!
We test rode the Pino on a (hilly) 5 mile loop in the Yorkshire Dales, I was terrified but at the same time overcome with a sense of freedom that I hadn’t experienced in so long. I started to feel safe wearing my neck brace and knowing that Danny was in control. We returned to the shop to order one of our own!
Suddenly the great outdoors was accessible, the Pino was my vehicle, and my disabilities were turning into abilities.
Always one for a challenge I decided that Danny and I would cycle the Coasts and Castles route from Newcastle to Edinburgh in three days, averaging 65 miles a day. Neither of us had done any cycle touring before and, at the time, this was our greatest challenge on a bike. We loved the whole experience (even the pouring rain in Scotland) and it definitely sparked my desire to see more of the world by bike.
Having built up enough strength through cycling with Danny on the Pino, I wanted to regain some independence and purchased an ICE Trike Sprint X through our local accessible cycling charity, Get Cycling, in York. I had given up driving by this point due to medical conditions, a trike was not only my way to exercise, but also the key to unlocking a normal life where I could independently go to the shops and the market without needing to rely on others.
I have ridden my ICE trike at every opportunity since I purchased it, taking on as many challenges as I can find! This has strengthened the muscles in my body an unquantifiable amount and helped support my unstable joints, although I still have my medical conditions and still face problems on a daily basis, my life is a lot easier than it was.
With my body as strong as it is now, I want to push it to the limit for my own strength of mind as well as to raise awareness.
5000 miles with a small amount of luggage is a daunting challenge, but I have spent a long time learning about and understanding my body and how to look after it and this along with my determination and stubbornness will get me though.