I have Charcot-Marie-Tooth Disease, I am a mother and I work full time as an IT Manager.
CMT has probably shaped who I am the most as it’s been with me the longest, although it was not diagnosed until I was 36, I had been showing symptoms since my early teens and I had had some surgery on my feet in my twenties. My hands’ clawing was at first assumed (by me) to be related to my job and excessive computer use but a keen neurologist said that as soon as he saw me walk across the room he knew I had CMT! My main symptoms are weakness, tiredness and poor balance.
CMT certainly doesn’t define me though. I am a keen camper and part time festival hippy. Every summer I can hardly wait for the weather to be good enough to tempt me out in my tent. I am a minimalist Glamper! No electricity hook up but plenty of bunting, solar powered fairy lights and flowery deckchairs. My husband doesn’t share my camping bug so I camp with my 13-year-old daughter.
To ensure I can get the tent up on my own I use a Dutch Pyramid style tent, one most would think of as ‘old fashioned’, but due to their reliance on one main centre pole they are simple to put up even when you are alone, have poor balance and weak hands. I actually own three tents (one painted for festival use) and only threats from my husband have prevented more purchases. Ebay is a terrible danger to the camping obsessive.
I usually start camping in March or April and go away as many weekends as I can until October, last year we camped for Halloween which was cold but fun. But the best use of the tent is to attend a music festival for a long weekend, letting my hair down, entwining it with flowers and being a hippy for a while.
This year I’ll be taking my daughter to Glastonbury, Wilderness and Camp Bestival again, a fantastic music festival in Lulworth in Dorset that is family friendly, very safe and enormous fun.
For anyone that hasn’t been to a festival I can recommend it as a way to relax; even the uneven ground can be overcome if you take your time, there is no hurry to do anything, lots of people are drinking, so my wobbly gait and odd stumbles go unnoticed.
For those that can’t face pitching a tent (although that is the best bit) many festivals have ready-pitched tents, yurts, gypsy caravans, and disabled areas close to the action to save the long walks. I'm not 'disabled enough' to qualify for a spot in the disabled camping section and don't use a wheelchair, I'd love to hear from campers or festival goers that cope using a wheelchair on site, I imagine that unless it's very wet a motorised wheelchair would cope ok, but spare batteries?
Don’t be fooled into thinking that festivals aren’t out there for you! There are hundreds
of festivals every year from small beer festivals, to huge well-known music festivals. Local festivals or those of special interest are often more fun than the larger ones.
We like smaller festivals where there is dressing up, music, food and general silliness, on a smaller scale, this year we are off to the Findon Faerie Festival in May
One thing I did invest in was a festival trolley. You can hire them but I use mine all through the festival as transport and instant seat! (I've got a well trained helper)
For information on these and other festivals
article originally published in CoMmeNT Magazine in 2011 (updated for this blog post)