As a woman of 26 I like to dress up for an evening out, maybe wearing a nice dress with pretty shoes. But as a woman with EB Simplex, it is not that easy.
Luckily only my feet blister but dresses do not look so good worn with trainers, and sandals do not look so good worn with blisters.
I try to take every effort to not let the condition affect my life in any major way, but recently I have had to admit that there are limits.
Back when I was in school we were offered the opportunity of a lifetime - a month trekking in India - and I was determined that my feet would not hold me back. But after a weekend’s training on Dartmoor and blisters the size of houses on my feet I had to admit defeat. I have always regretted that decision and felt I should have pushed on.
Then last November I took a trip. No extreme trekking, just a leisurely sight-seeing trip to Hong Kong, and then on to America. The locals consider 28C in November a bit chilly but after the 13 hour flight my feet swelled up so I could only fit on one of the three pairs of shoes I had with me. It would take the -4 degrees temperature of Chicago to return them to normal and then they blistered. Within three days I could not take another step and even finding a comfy part of my feet to stand up on was difficult. In the end I did manage to enjoy the sights and sounds of Hong Kong and China, but it made me realize that trekking was out of the question.
People find it hard to comprehend, and ask if I was wearing comfortable shoes? Believe me it is like the ‘Princess and the Pea’ when I go shoe shopping, if even one bit of stitching is wrong in the shoe I can immediately feel it. People also sometimes think it is laziness if I say ‘I can’t walk that far’ on a hot day. And of course once my feet have blistered I don’t like any one to see them!
It has affected my work too. I have always dreamed of working in animation, but the recognised route to getting a foot in the door, is to be a runner. I spent five weeks as an intern on a major animated film, doing the basic runner's jobs of a 50-person tea trolley round, and going backwards and forwards to the local supermarket (a short 10 minute walk away) to get lunches. It took its toll, not only on my feet but on my attitude to the work as well. It was an all go work day from 8am to 7pm with an hour for lunch, and if you were caught taking a break in between opinions of you dropped. The moment I told them of my problem I was immediately counted out of the running for the job. If I couldn’t manage five weeks, how could I manage a full production?
But don’t worry, it all turned good in the end, I did get my foot in the door. Just in a more roundabout way.
