I have vague memories of being very young and going to the pharmacy (it was probably the doctors but my memory is of a shop) because I had a rash behind my knees. Eczema. They took scrapings for testing. I remember the scraping felt really good. It didn’t hurt, but it was a nice relief. That’s all I remember and from what I understand I grew out of my eczema pretty quickly.
I never had anymore skin issues growing up. As a teenager I rarely got pimples and my mum was always telling me that I had really lovely skin. I never used moisturisers or any other skin creams because I didn’t need to. All my friends were using them and getting lots of pimples but I felt lucky that I didn’t have that issue.
Then I hit 16. It was an interesting period in my life. I left school and home because I thought I knew everything and went flatting. I ate junk. Fish n chips, cakes, McDonalds, chocolate bars, as long as it wasn’t healthy, I ate it. I also started smoking and had the occasional drunken night.
I had always been heavy, but I got heavier. I didn’t drive so I did get exercise from biking everywhere but I started to get lazy on that and took the bus often instead. I called in sick to work a lot because I always felt terrible and I spent most of my days sleeping, while filling in time at night playing video games and hanging out with my only friend at the time, who was quite possibly the worst influence I’ve ever had.
After a while, I started to get a rash on my right calf. It was itchy all the time and it started to spread. Before I knew it, it was covering both my lower calves. I stopped wearing skirts at this point because I was embarrassed. A lot of my friends at the time who had seen it were grossed out by it.
I went to the doctor and was given antibiotics, some antihistamine creams and aqueous cream. It just kept getting worse though, nothing I did seemed to help and while it wasn’t spreading anymore, it was becoming unbearable. Unfortunately it was to be a very long time before I found any relief that wasn’t temporary.
The thing I’ve found about eczema is that everyone seems to know someone with it. And yet I rarely came across another person with eczema as bad as mine. And I’ve had a lot of conversations about it and been given a lot of advice that unfortunately didn’t work.
All my doctors would give me was different creams. Other people suggested all sorts of different things. Apple Cider Vinegar was one, which stung like anything but did provide temporary relief from the itch. Fish oil was another, that I didn’t notice a difference with but couldn’t afford to keep taking anyway. Emu oil, tea tree oil, sun tanning, wheat oil, baths in bleach, baths in pink salt, calamine lotion, the list was endless and often bizzare. I did try most of these ideas, including the bleach bath and hypnosis of all things, but nothing helped.
I got a little annoyed. Every time I was given advice it was followed by “it’ll clear right up” and when it didn’t, I would get very frustrated, which would make me itch more, and basically start a vicious cycle where I would make it worse. Stress certainly was a factor.
One thing that did help, was acrylic nails. Obviously they didn’t stop the itch, but because my nails were so blunt I couldn’t do so much damage anymore. Unfortunately I wasn’t allowed these nails at some of my jobs and also, couldn’t afford the maintenance. And I needed something to stop the itch as well as heal my skin.
I took so many different vitamins and minerals, drank many weird concotions from health stores that the shop assistants assured me would clear up my eczema and give me a new lease on life and slathered my skin with countless ointments, lotions, moisturisers and steroid creams. I stopped using soap as directed by my doctor and changed laundry powders constantly in case it was something in those.
I would wake myself up because I’d been scratching so hard it would start to hurt. My sheets were constantly covered in blood because sometimes even small movements would open my wounds. I would spend on average 20-30 minutes after getting home from work just scratching because I hadn’t really been able to when I’d been at work.
You could tell where I’d been sitting because there would be a lot of white on the ground beneath my chairs. This was flakes of skin that I had scratched off, but also bits that had fallen off by themselves, or from rubbing up against my clothes.
I can’t even begin to guess how many times I’ve been told to stop scratching. And while I knew that the majority of these people were saying it because they cared, it just wasn’t that easy for me. It was a 24/7 itch. There was no relief from it and it was probably the thing that consumed my mind the most.
I cried a lot about it, partly because I was in pain and partly because it made me hate myself. I hated that it was so bad that I scratched in front of people, that can’t have been a good look. It was so bad that I stopped going swimming because I was embarrassed and because some people (not my friends thankfully) didn’t want to be in the same water as me. I always wore long pants, even on ridiculously hot days because I didn’t want to be seen as the monster I thought I was.
I was referred to a specialist in the public health sector. I was incredibly hopeful and mum went with me for support. But both our hopes were dashed as the doctor was more interested in his car that he had illegally parked in the drop off point to pay much attention to me. He gave me my first ever round of oral steroids and then sent me on my way.
The steroids helped in a big way and they made me feel amazing. I couldn’t sleep, and I was a little shaky, but I had energy to burn and my skin was clearing up drastically! But that can’t be a good thing. And sure enough as soon as the steroids were over, my eczema came back with a vengeance.
About 5 years ago it spread to my eyes. There was no hiding it then. At first I thought it was conjunctivitis and so did my doctor. My eyes were full of puss and would be hard to open at times. But the eye drops for this didn’t help at all and soon the skin around my eyes started scabbing up and cracking. It worsened so much that I ended up going to A and E while I was on holiday in Invercargill because I couldn’t cope with it anymore.
The hospital was great. They delivered antibiotics through an IV as a kick start and prescribed me plenty too. The next morning there was a massive improvement, but then when the antibiotics ran out, the eye issues came back. A friend suggested an elimination diet but I didn’t have the willpower at that point of my life.
For about a year I was off and on steroids and antibiotics with differing results until one day I could take it no more and I went to see my doctor in tears. I cried for the entire appointment, in my black work uniform that was absolutely covered in powdery bits of my skin. I was covered from the neck down in the rash and it was driving me absolutely mental.
My medical centre has a special fund that they donate specialty care to patients with extreme conditions which she recommended me for. Another dose of steroids was prescribed and I was able to get some relief for a few days, before I got the phone call that I would be going to a private specialist payed for by my medical center.
I went to the specialist and was proscribed more steroids, more creams and ointments and a medication called Azathioprine. I had to have weekly blood tests to check my liver function and I wasn’t allowed to spend much time in the sun because the medication increased my risk of skin cancer. There were a bunch of other things to watch out for too.
It worked. I felt awful for the first few days, but my skin started clearing. After a year I stopped using it completely and my skin was fine for a year. It was seriously an amazing year, to not feel like a monster for a entire year, when that’s all you’ve felt for over ten years is amazing.
Unfortunately, last year it came back. One thing I’ve noticed is every time it comes back its not a gradual process. It can go from mild to full blown in the space of a couple of days. And the emotional damage is just as fast. I was referred to the specialist again and given the same option as the previous time: Azathioprine.
This coincided with my panic attack and my attempts to start looking after myself instead of treating my body badly with junk food and a sedentary lifestyle. Finally, with the threat of more nasty medication I realised it was going to be a never ending battle and something that was going to cost me a lot of money. It already had cost me so much, financially and emotionally. It was time for a change.
It wasn’t long after that, I started planning my elimination diet, which really did work and gave me the added bonus of healthy weight loss, better sleep patterns, more energy and all the other wonderful benefits I’ve had, simply from eating real food. I know now that as long as I keep up my healthy lifestyle I will not have to deal with my eczema anymore. And when my healthy lifestyle makes me feel as amazing as it has, its really easy to stick to it.
For anyone struggling with eczema as I did, my only advice would be to look at your diet, as you may potentially be eating something that causes it. There are so many triggers out there and everyone experiences them differently. While I still don’t know specifically what causes my eczema, I know that falling off track with my healthy eating flares it up. It’s not an easy way to heal eczema, but for me it has been 100% worth it.
Smiles and Sunshine