Looking after yourself during the pandemic with EB

By Heather Bailey – DEBRA Ambassador         

So I’ve been working from home and furloughed since March, and this is the best summer I’ve ever had with my skin. My daily routine consists of walking down to bed – kitchen – sofa – kitchen – sofa – kitchen – sofa – bed,  so I have next to no blisters for a change. The biggest challenge I’ve had so far has been using my fingers for my mobile phone and tablet but with a stylus, even this is manageable now.

I’m cooking a lot more and watching what I eat, from talking to my friends I might be the only person that comes out of lockdown lighter than I went in, no sausage rolls for breakfast and chips every lunch, more quesadillas and lighter meals for me. With all this extra time, I’m making sure to take some time each day to think about things, not quite meditation but more than I usually get time for in the hectic rush of life.

Many people reading this will either have a long term health condition or know someone that does. The trick is to find the difference between living with a life limiting condition and letting your condition limit your life.

Yes, I have EB simplex. I have great days and days that are truly awful with it.  I have to make choices between actions and consequences, and sometimes I chose to not do something and save my skin and sometimes I go “to heck with it” have an amazing time and then spend some time in my wheelchair.

Just because I have EB, doesn’t mean we can’t do things, you just have to do them differently to people that think walking is fun (weirdos). There will always be someone that has it worse than you, but that doesn’t mean your problems aren’t worth talking about and being open about. Both my partner and I have lifelong conditions, but those aren’t our personalities, my EB will always be third to me, I never introduce myself as “Hi I’m Heather and I have EB” it’s normally “Hi I’m Heather and I can drive tanks”.

Having EBS means I don’t look disabled the way people want me too when I use my chair, but that is their problem, not mine. I’m just as entitled to my wheels as anyone else. Living with EB can be incredibly frustrating as many of you know, some days I will be fine and running around playing on the swings, the next day I could be curled up on the sofa with my dog unable to move.

The best way I’ve found to live with my EB is to almost treat it like a different person, ask it what it feels able to do that day and work with it not constantly fight against it, it also helps separate it so my pain doesn’t become my personality more like an annoying toddler I have to live with.

Watch Heather's life in lockdown vlog below.