DAY 114

As expected, last night I experienced my first mini-flare on my back for weeks in response to my histamine binge at my sister’s birthday party, and some on my arms and thighs as well. However, after one application of Dr Aron’s compound overnight it’s gone back down to unitchy, healthy skin again 

Unfortunately I didn’t take any photos last night because I had a headache and conked out on the sofa at 9, but there wasn’t much to see, just mild itchiness and some pink patches.

Surprisingly, my forehead didn’t flare. Happy days! I was worried my arms may be fully flaring but this morning they’re back under control, which is probably more to do with the fact that I used one app of undiluted steroid last night as part of my 101010 routine.

DAY 113

Yesterday was my sister’s 21st birthday, so my low-histamine diet went entirely out of the window. Although I kept to G&Ts, my mum was cooking for 17 people and I didn’t want to make her life more difficult by demanding restricted meals. Once at the head of the glorious buffet table, my primal instincts took over and I demolished all the cheese, tomato, unfresh meat and packaged snacks I could fit into my poor little straining belly.

Now, I wait to see if the eczema will explode. I was a little itchy yesterday but nothing a non-eczema sufferer would note. I have a little bit of rough skin on both shoulders and my collarbone, but that was there the day before. I worry that this splurge might affect my tapering down on my arms (which previous experience dictates are basically hanging on a very delicate thread between being able to taper successfully and flaring back up into devil-wings) but also worry that if it doesn’t flare I’ve been making myself suffer without tomatoes for a very long time.

I don’t know a huge amount about how elimination diets work, but I remember reading somewhere that you just need to do it for long enough to ‘reset’ your system responses to certain foods, and then you can reintroduce them. I’ve been doing the low-histamine diet (which seems fairly similar to an elimination diet) for about 7 weeks now, so if this applies maybe I’ve reached that point. Or maybe I’m talking utter bollocks. The latter seems more likely.

It might be time to look into hiring a nutritionist to give me some pro-advice… Either way, my skin is fantastic and I am happy 

I have an interesting week at work coming up, travelling to bingo halls to talk to old ladies as part of some market research for a client. (good job I’m one of the few people on this planet under the age of 45 who are able to admit they genuinely love bingo). I’m not a naturally outgoing person so talking to strangers may increase my stress levels, plus the stress of travelling from Kent to Manchester to Scotland in a matter of days may have an effect. But as long as I don’t forget my cream I think I should be ok. Feeling confident!

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!

DAY NINETY-NINE

A good week!

I let myself go a little on the diet front, with a McDonald’s meal on Friday night and then lots of mayonnaise on my meal in a restaurant on Saturday. Later, I had the miniest of mini-flares which was placated by one extra app for that day only. Goes to show that my diet it obviously doing some good!

I’ve realised that by being on this low-histamine diet, which mostly consists of just avoiding pre-prepared food, I’ve almost completely wiped added sugars from my diet. I knew that sugar is a trigger for a lot of people, and I tried to give it up before but failed miserably (think I lasted about 4 minutes). Now I’m finding it really easy, and in fact I’ve found that when I do try sugary foods (like having a cheeky scoop of vanilla ice cream while everyone else had profiteroles) I find it too sweet and it makes me feel sick. Even the mayo in a McDonald’s McChicken Sandwich was a bit too sickly, and smelling the Dairy Milk chocolate that my boyfriend was teasing me with yesterday didn’t make me want any. I must be really, really abnormal now. I’m going to write a food page in the Itchy & Scratchy Show section, so watch this space!

In terms of the stubborn parts of my skin, I am barely controlling yet another flare on my forehead. I’m beginning to think I should just give up with that area as I can’t keep slapping on undiluted steroids every other week. It’s currently on 5x compound but I may have to go up to 6 if I want to avoid using undiluted cream. It doesn’t look too bad in the photo but it’s annoying the hell out of me. Maybe I’ve lost sight of what a real flare is now…

My arms are down to 1x undiluted and 4x compound a day. They’re holding up nicely, but it’s hard to be optimistic. I know that keeping my diet clean is really important right now as I try to taper off the undiluted cream completely.

There are a slight few bumps around my neck and a stubborn bit on the corner of my jaw which is probably because I absent-mindedly pick it when I’m concentrating…

Oh, and a tiny bit of rough skin on my right thigh which has gone a bit of a weird texture, but it’s manageable right now  I find I get this texture on patches where I’ve used the undiluted cream in the past, but it goes away over time.

And the rest of me is on a measly 2x apps a day!!! Still struggling to believe it.

My hayfever is going wild even with Loratadine, so I may book a doctor’s appointment to see if I can get a stronger (or at least cheaper) supply of antihistamines.

Ta-ta for now!

DAY NINETY-ONE

Ohhhh I went to stay at a friend’s and forgot my creams... such an idiot.

We went out drinking in London (only G&Ts!) so missing last night and this morning’s application is not good, especially bearing in mind my forehead is only just holding up on 5x a day, my arms are on what should be a short burst of undiluted cream and the rest of my body is only on 2x, so has effectively gone an entire day without medication.

Much to my surprise though, my skin appears to be holding up. I expected to wake up digging at myself but in reality I only have tiny itches on my dry elbows and parts of my forehead. Still, it’s making me really anxious which makes me itch more, so my boyfriend and I have skipped the traditional greasy spoon breakfast with the crew and gone home early. Oww...

Luckily I had some Lipobase in my handbag, so I’ve slapped that on before and after sleeping. I think my arms needed some moisture anyway. A few days of the undiluted cream makes you appreciate how silky and moisturising Dr Aron’s compound is.

Despite this little cock-up, I feel really in control of my condition at the moment, although naturally I’m worried about what happens if tapering off this second round of undiluted cream on the arms won’t work again – what happens then?!