Sometimes when I see a person who is missing something, something like a limb, I wonder if they think people with all their limbs take them for granted far too often. I have wondered this for a long time, do I take my ability to walk and talk and hear and speak and write for granted? Recently I was thinking about this and realised that my skin is something that other people with normal skin might take for granted.
I have to moisturise after any contact with water, I have to sit in my stickiness after a shower until the moisturiser soaks in, even during winter, I have to only shower once every two days because I want to limit my contact with water, I have to spend money on all sorts of creams and ointments and find make up brands that suit my skin. And I’m sick of it. I’m sick of being constantly itchy all over. I’m sick of ripping into my own skin. I’m sick of moisturising. I’m sick of the consequences if I don’t. I want to swim in the ocean without pain. I want to be able to use an electric blanket without being insanely itchy. I want to get straight out of the shower and straight into warm clothes. I want to wear a perfum and spray it on my skin. I want to not care about the skincare or make up or laundry detergent brand I buy. I want to wear any kind of materials I want. I wish I didn’t have to apply moisturiser and creams so often!
And then, a video of a boy comes along, a boy whose skin basically burns itself off. A boy, who at 22, is wrapped in gauze everyday that takes hours to put on. A boy who has a short life expectancy because of his skin.
All of a sudden, I am humbled. I realise that while my struggles are annoying, and painful, I am still so well off. I am still pretty healthy and mobile. I am not going to take my skin for granted.
If you would like to read about James Dunn, who suffers RDEB, click HERE
I can’t remember the last time my skin was without at least one large scab. Unfortunately, or fortunately depending upon how you look at it, they regularly occur on my butt. These scabs can stick around for years as I pick them in my sleep. I’ve tried so many things to help them recover from prescription creams to putting a bandaid on it at all times. Nothing really seemed to work and I’ve ended up with scars. Recently someone suggested fake nails or gel nails as they are softer and don’t tear skin quite so much. So I decided to give it ago, the results were positive to say the least. I am currently free of large scabs and anytime I scratch I don’t tear my skin. It is expensive though to keep up, I got SNS gel with fake tips as I’m also a nail biter, but well worth it when it is a last resort. I have been back twice to get new ones when needed.
Hey! While this is the very start of my blog, my journey with eczema started from birth, I finally decided to create a place to vent, record tips and tricks, share my journey and find out information from others who are in the same position, who knows I might find some friends along the way.
Currently my eczema is having a flare up. I’ve been pretty lucky in the past as I’ve usually had my eczema somewhat under control and flare ups don’t last long. But this time it has lasted for a while and has been more painful than ever.
I probably won’t post many pictures of skin irritation, mostly because if you’re reading my blog you probably already know what it looks like. If you don’t, a quick google search will show you.
Feel free to share your own knowledge and thoughts, but please be kind. Kindness gets you more places that criticism, I want to create a safe and respectful place for people to share their thoughts. If you notice any information is not correct or comes from a shady source, let me know, but again please be kind.