DAY 109

I’ve been so busy since the last update. Work days have been long and stress levels have been high after my grandpa went into hospital for a week (he’s fine now!). Hours after he first went in, I had a big flare all around my neck, the real sweaty kind. But (BUT) during this time my forehead – my most susceptible patch – was absolutely fine. I don’t want to jinx it as I find that as soon as I report something on the blog it yoyos the other way the next day, but it’s been stable on 5x compound a day for more than a week now. I watch it like a hawk and there have been times when my heart sinks because it looks bumpy, but it seems to have settled a lot compared to a few weeks ago (for anyone wondering, it’s really quite hard to type when all your fingers are crossed). And look! My eyebrows are growing back!

I’m taking my arms off the undiluted stuff sooooo slowly this time, I’ve gone from 4x daily to 1x daily to 110110 to 101010 (for readers not familiar with the terms, 1010 is basically binary for using it every other day, I’m sure you can work out the rest). On the ‘off’ days I use 5x compound.

I get random itches on my back, front and legs (my boobs have been really itchy but I’ve put that down to a certain bra!) however none of it is worrying me. I’ll probably keep it all on 2x a day for another week or so before dropping to 212121.

Life is good!

Anyway, so my big neck flare which I began talking about all the way up there is now perfectly normal again after a week of 5x; I’m stepping down to 4x tomorrow and so on.

It’s weird, because in the bad old days if I ever got a flare or a new patch, there was never the thought of “oh, maybe it’ll be better or even disappear by next week”; there was always just a lurching sense of doom as I knew that that patch was only going to get worse. I remember when it started spreading down past my hips for the first time and I sat on my bed for ages looking at my thighs, trying to memorise them clear because I knew I might never see them healthy ever again. It’s strange that you almost start to mourn body parts, and end up staring at normal people’s skin, wondering what it would be like to wake up smooth – or fall asleep in the first place. Even now, I find healthy skin a marvel; not many can appreciate how delicate our biggest organ is the way I can.

Someone on the support group the other day asked us to describe what severe eczema does to your life and your family. The only way I can answer this is to say that eczema becomes your life, and even when the skin is healthy you’re always slightly on edge, waiting for it to swallow you up again. You can’t sleep; you get stressed; you can’t concentrate; you lose the ability to process information and learn; you struggle at work; you don’t eat enough (I used to get itches so bad that they made me nauseous); you have a short temper and snap at those you love; you become a hermit; an invitation to a social event seems like the worst news in the world and so your friendships suffer; even if you do go to an event you end up talking about your skin the whole time; you dread going to places where your photo will be taken (after 4 years of hard work, my graduation photo was ruined by swollen eyes); you cry every day; you can’t move/walk properly; you can’t bathe without screaming; you stick to your clothes and bedsheets; you have your whole family on standby (even when you don’t live at home), also sharing your anxiety and pain; your heart bleeds (non-sarcastically) when your parents blame themselves for your genes; you suffer social anxiety from people staring at your wounds, bald patches or dandruff; you waste £100s, even £1000s, on medicines, professional advice and “miracle cures”; you’re forced to act grateful when people off the street tell you the exact cause and cure for you eczema like you’ve never thought of bathing in Oilatum before; you have sex with your clothes on (both because you feel you look disgusting and because it hurts when he touches you); you lose all confidence and try to blend into the shadows; you don’t feel like you even have a personality anymore; you’re terrified that your sibling might suffer the same; you can’t see hope and your life is a complete misery. So for me, there would be few medicines out there that would be too risky if it meant a return to a good quality of life – that’s why health economics is run by QALYs (quality-adjusted life years), not life expectancy. Just because you won’t die from eczema (although you could potentially die from the infections or even antibiotic resistance after they put you on a drip to deal with said infections), don’t assume it can’t ruin your life.

Finding Dr Aron has, in that sense, saved my life. Of course, there are risks and progress has not been entirely linear, but am I happy? Absolutely. Do I see a way of ending the pain without jumping off a bridge? Hell, yes. Does this give me a plan for eventually coming off all medicine (whether that be in a matter of months or years)? Time will tell, but it’s looking very positive!