My AD Life... Sleepless Nights, Skin Flakes & Mood Swings
Last updated: April 2023
It’s 12:15 AM, and I cannot sleep. I have atopic eczema. I’ve had it since I was a child. I also have asthma, as the two conditions are often linked, and when I have been occasionally asked which of the two I’d rather live without... the answer is always eczema.
Why do people assume they understand?
People think they know how debilitating it is, but I know, from the things they say to me, that they haven’t got the faintest idea. It’s not their fault. If you see someone with crippling back pain, a broken leg, or an agonizing toothache, it is instantly easier to have more empathy.
Most people won’t notice someone with dry leathery skin that sometimes looks red and angry or flaky (and that’s only the visible areas), but if they do, they usually recommend a moisturizer that worked on their best friend’s daughter when she had a rash on the inside of her baby toe. Or “..have you tried eating and bathing with oats simultaneously?”
People mean well, but these typical responses just highlight the lack of understanding they have for the condition.
How have I worked my life around eczema?
I have been reasonably fortunate in that I have been able to engineer my life around having this horrible condition. I work for myself and have taken on a small mortgage in order to manage my stress levels. I work four days a week, and I joke to my friends and family that it’s due to my laziness (it is a bit), but in actuality, it’s all geared up so that my skin can recover for the following week. I also work a four-day week, so I can catch up on lost sleep - another stressful and debilitating cause.
What do my home and diet look like?
The Fridays that I take off are spent hoovering my flat, changing bedsheets, washing clothes etc. Every day I dust my bedsheets down, and I try to hoover my bedroom every day, but I don’t always get time.
Diet-wise, I try to eat as cleanly as I can. I live on eggs, fish, pasta, rice, grains, spinach, tomatoes, and peppers. However, I also eat crap. Crisps, chocolate, but this is normally a treat at the weekend. I don’t drink alcohol, but my weakness is caffeine.
How have I adjusted my shower for my skin?
I shower every day, and it is a complete mission. I wash only using shower gels on my main bits, but for the rest of my body, I use medicated moisturizers. Again, I’m lucky enough to have had a water softener installed into my flat which makes my skin feel great but if I have open skin, which is frequent, it stings like mad during the showers.
Every other day I have to hoover my car out because my dead skin gets everywhere. Not a good look if you’re teaching people to drive! Again, it’s exhausting.
How are my moods and mental health affected?
I suspect I have anxiety and depression because I have extreme mood swings. I’m always concerned that I look rough, especially when you catch people looking at the areas most affected. Then to be told by loved ones that it’s paranoia and “When are you going on another date?” Exhausting!
What are my relationships like?
I live alone because all of my relationships have failed, and I put this down mostly to my mood swings and self-indulgence, which is obviously a result of having eczema. It’s exhausting. My family stays loyal and puts blame on the shortcomings of my exes, but I know the truth. “There are loads of people that have successful relationships where one has eczema, and they don’t all fail? You got unlucky," they say. Yes, and there are people that have had both their legs blown off while at war, and their Mrs hasn’t left them. What’s your point?
People deal with their conditions very differently from one another.
What are the worst things people say?
The worst two things anyone can say to me or any other atopic eczema sufferer is, stop scratching and why don’t you go to see the doctor?
It makes me so annoyed I can’t begin to explain why both questions are hard to hear. So I’m not going to bother.
How does eczema impact your quality of life?
Do you prefer: