I was 19 when I started My Long Walk Around Britain, then Covid hit and I was forced to take a 15-month break, I’m now 21. I was diagnosed with HNPP (Hereditary Neuropathy with liability to Pressure Palsies) when I was 16. It had already started to affect me in life-changing ways, as it has done for many to varying degrees.
It had been gradually dawning on me that I was different from most people my age. They didn’t struggle with cramps and pain when writing or baking, it wasn’t a normal thing, that was a tough realization and a difficult obstacle to overcome because I wanted to be able to do normal things without suffering for it.
When I realized I needed to stop going to the gym because it was causing significant problems with my hands it was a tough pill to swallow, my mates were going and getting fit but, realistically, it was a bad idea for me.
When I left school, rather than go to university, I had a go at plumbing and landscape gardening. I enjoyed doing both, but my body wasn’t happy… not just because I have HNPP, but because I’m also very allergic to common plants and to some of the materials I was working with.
I tried taking precautions and making sure I gave my body opportunities to recover, and I was able to carry on to some degree, but eventually, I had to stop because my hand stopped working for a while and I was getting periodic episodes of numbness across my body. I’d been learning skills so that I could go into property development, but it was clear that I needed to rethink my future.
I didn’t undertake this epic walk without thinking through the potential long-term dangers. I have had many discussions with consultants and have devised a strategy of rest breaks/rest days and gained a greater knowledge of signs of unseen damage so that I’ll know when or if I need to consider abandoning my expedition.
My aim in undertaking this expedition is to get this mostly invisible, under-represented disabling condition recognized. And to encourage people to be more aware of the effects of invisible illnesses and encourage them to help and support, even champion, people who are suffering.
Money raised will go towards funding the walk and Dr Jun Li’s research. He is actively involved in helping and supporting people with this horrible condition and his research needs funding.
I am keeping a diary, monitoring the effects on my body, and sharing my experiences with his team so that he can get a better picture of the effects of long-term exercise.
I’m very thankful to all the people who have been supporting me both financially and practically. I hope after reading this that you are inspired to get behind me on this too. It will be so appreciated and WILL make a difference.
You’ll find daily updates on Facebook and Instagram. If you’d like to donate, you’ll find details here https://barneylee.co.uk/donate/
If you want to know where I’m going to be and when you’ll find my itinerary here https://barneylee.co.uk/itinerary/
