Normally I blog about my journey towards a cure for my dyshidrotic eczema (if you're reading regularly, you'll know that it isn't exactly going my way). But today I wanted to post about something else, the thing that people who don't suffer with eczema don't realise. How much this condition can really affect day to day life.
I am now 19 months into this hellish experience and with every day that passes, I find myself reflecting more on more on just how much this is affecting me.
I'm angry - I'm so angry that this is happening to me. I'm angry that I've spent hours and hours of my precious time trawling the internet for answers that I'm not getting from doctors. I'm angry that I've already spent several hundred pounds searching for answers. I'm angry that I spend most of my day thinking about my hands, wondering what I'm going to do about them. That when I should be enjoying time with my little boy, my mind is jumping around, thinking about different options and making plans for what I should do next.
I'm frustrated - why are the treatment options so poor for eczema? I guess I know why - the money is going towards life limiting conditions, and of course I understand that. But it feels like there is no understanding of just how much this can impact doing simple tasks. When my DE is at its worst, it is painful to hold a pen. I wince when my toddler holds my hand. Getting my hands wet makes it worse, and with a toddler it is almost impossible to avoid that. Reading the studies on what actually works for DE makes for depressing reading....there really is very little that does work!
I'm miserable - living day to day with constant itching and pain is really quite depressing. There is no escape from it. Whatever I'm doing it's always there, a constant reminder that I have this problem, and that nothing I do is helping. The restricted diet I'm on is horrible - I love food, its one of my greatest pleasures in life, and now I can't eat any of the things I love. Going out with friends is difficult; now I'm the awkward person who needs to check all the menus first. The person drinking a peppermint tea whilst my friends enjoy a chocolate dessert.
I'm jealous - I'm jealous of other people who don't have eczema. I find myself looking longingly at people's smooth, blister free skin and wishing that my hands looked like that. I'm jealous of other Mums who can help their toddler build a lego tower without catching the bricks on the blisters all the way up the sides of their fingers.
And despite all this I still consider myself a positive person. I try to keep smiling. I do yoga every day to try and keep my stress levels down. I keep searching for a cure...looking for my answers, all the time because I am determined that I will beat this.
But some days I just feel like I want to scream.
If anyone is reading this...tell me it isn't just me??
I've had this type of excema for several years i hate it
ReplyDeleteHello my name is Rachael, I am 33 I live in Australia. I have always been “sensitive” is what people say about me. Because I am allergic to dogs, cats, dust. I had eczema as a child it went away with the occasional flare up. I work in Kitchens with a lot of water/chemicals it’s bad sometimes. It got really bad this year I would wake up scratching the skin off my fingers. I used the creams the doctor said it worked temporarily I used natural creams with goat milk and honey. One day like a message from a greater power said in my head it’s all the bread and wheat your eating. I stopped eating bread and pasta and it has cleared up. We are all different but this works for me. I am thinking of you I hope you get peace of this nightmare.
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