DAY 142

I’m in Indonesia! Currently island-hopping in the Gilis, then off to Lombok for a few days and back to Bali after that.

It’s consistently 32-34 degrees in the day, and lowest at night us around 28. I’m baking.

I can’t sit in the sun like I used to, and my experience with heat rash in Cyprus says I shouldn’t, but it’s annoying coming to paradise and only being able to sit on the beach for 30 mins at a time. Turns out, my poor boyfriend has contracted typhoid so we’re making good use of our villa anyway…

My arms have been flaring in the heat, but generally they clear again overnight. I only recently tapered off the undiluted steroid, but I think I might go back to 1001001 just to keep it at bay.

Food is really easy to control here as everything is so fresh and there’s plenty of fruit to be had!

Some exciting updates…
I went in the sea for the first time since April. In Dubai, I cried, but here it was just a minor prickle and a bit of redness on my calf, so to be safe I didn’t go in any further than my knees:

A fellow patient and ex-TSW girl, Kasey, and I have teamed up to try and get Dr Aron’s treatment out there, not because he needs more patients (he has a near unmanageable waiting list) but because we need more doctors on board across the world who understand why this treatment method trumps the current guidelines doctors are given.

We’ve set up an instagram account and have over 130 followers in a matter of days. We’ve also received some messages from non-patients in some pretty desperate states. Even though the aim is not to get more patients for an increasingly over-worked Dr Aron, it makes me proud that we can help people in the same need I was in a few months ago. Search @draronpatients or #AronRegimen on instagram to see it!

We’ve already been accused of editing our ‘after’ photos, such is the scepticism of anything to do with eczema that might actually appear to work. I don’t blame the person who assumed it though; we’re so bombarded with ‘miracle cures’ all the time that we conclude it must be fake. I admit, this one is particularly hard to believe:

Our longer term plan is to get some articles written and possibly even a petition to ask for current medical guidelines to be reviewed; I have a blogger account at HuffPost and Kasey has friends at itv, but in truth we’re both scared of the oftentimes horrendous public backlash you get from admitting you like using steroids (from both some TSW peeps and the natural remedy/nutrition sellers) so it may take a while before we perfect the message we want to send out.

Here’s one more photo of my clear skin before I get back to chillaxing!

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DAY 129

Sorry, I’ve been really quiet recently. To say work has been hectic is an horrific understatement, and I’ve been working into the evening most days. It’s a good kind of busy though. In the dark days, this added stress would have led to a flare of almost incomprehensible magnitude, so the fact that the only small itchy patches I have are on my calves and the only bumpy bit is on one side of my neck (and that only appeared yesterday) is pretty damn good.

It’s silly that I haven’t updated this in a while because a lot has happened; I’ve finally enlisted the help of a nutritionist. A few months ago, I honestly thought nutrition was a load of unscientific mumbo-jumbo and would scoff at those who went down the all-natural path, but the control I felt on the low-histamine diet has completely changed my view. I do not believe nutrition is a cure for eczema – I will always be prone to it – but I do feel as though a good diet can be used as a preventative method.

Anyway, my nutritionist, Jeraldine, went through all my history, current eating and future goals to come to a big food plan for me, complete with recommended supplements, a full food list, weekly meal plan and new recipes.

I also found out that I have the metabolic rate of a 17 year old which I’m probably more proud of that I should be.

The full report looked daunting at first, especially as it’s a big step away from the histamine focus (I can eat tomatoes, hurray!!!), but I’ve broken it down and understand the need to protein to reduce blood sugars to reduce insulin to stop hormones being paused to help digestion to detoxify etc. etc. etc. Stuff I would have laughed at the beginning of this year, however, from my memory of A-Level Biology it actually makes a lot of sense.

Our emphasis now is on “clean” eating, and making sure I get (wait for it) 8x portions of vegetables and 3x portions of fruit a day. Easier than it sounds, the other day I managed 12! It’s pushing me to try new foods; today I tried avocado for the first time (bland as hell, what is all the HuffPost fuss about?!) and yesterday I tried courgette (blurgh but I’ll soldier on…).

Here are some roughly 4 month skin photos:

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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.

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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!

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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!

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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!

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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?!

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DAY EIGHTY-FIVE

Oh my Spaghetti Monster, I’ve been told to go down to 2 apps a day on most of my body. It’s taken me so long and so many ups and downs to get to this level that it doesn’t seem real, and I’m a little scared.

I think poor Dr Aron was a little overwhelmed by the level of detail in my ‘concise version of events’ for the past 4 weeks, but luckily I included a table for him which I may start copying here to make things more clear. So this is where I’m at as of tomorrow:

My arms are properly playing up – although they look fairly clear and brown rather than red, the raised bumps are all over and itching like mad. Last night I started using an ice pack wrapped in towel to cool them down as they get quite hot sometimes. I’m trying my hardest to keep cool – I love being warm but my body has always struggled with keeping my temperature up to a comfortable level, so forcing myself to wear a tshirt with no jacket on a mild day is a bit torturous.

 Dr Aron has told me to come off the undiluted cream on my forehead completely because it’s too strong to use any longer. I completely understand this, but I’m still 98% certain that when I stop the eczema will come straight back. It’s on the brink as it is.

The only reason my collarbone is staying on 3x for a few days is because I wore a dress into London on Saturday which, although making me feel great, wasn’t exactly cotton and it rubbed a bit. I don’t have a proper flare there but I can tell it’s been irritated so I’m playing it safe.

My neck looks clear but is quite rough and itchy so I’m keeping it on 5x a day for a while with plans to move it down to 4 or 3x in the next few days.

On the diet side, I’ve been mostly keeping to it, although after my night out in London I got frustrated with the lack of hangover foods available in the types of places open on a Sunday morning so blew it all on 20 McDonald’s chicken nuggets and large fries. No sauce though! 

Dinners and breakfasts are quite easy as I can just have gluten-free porridge with rice milk or cook plain chicken with some boring, flavourless rice and peas, but lunchtimes at work are ridiculously difficult. I work in a small town with a village feel, so outlets for food are limited, and as I’m not allowed to eat leftovers since they build histamine over time, I can’t cook something good the night before. Quite often I just end up with something ‘unwholesome’ like bread and butter with nothing else. Long.

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DAY SEVENTY-SIX

This week I’ve spent 2 nights in a tent in north Wales and one night in a tent in Oxfordshire. During one trip, I went head-first on Europe’s fastest zipwire (a mile long, almost shat myself) and on the other I spent 15 hours drinking at a work do in a field. Bearing in mind wind/cold has always been a trigger and I have quite bad hayfever, it was always going to be a risk.

…But apart from the tiniest patch on my neck and teeny tiny parts of my forehead, I’m all clear!

Most of my body is on 3x a day, but my forearms, neck and one shoulder are on 4 and my forehead is on 4 with one round of undiluted cream.

The hardest part now is just keeping a track of all the different timings…

I’ve been sticking to low-histamine foods and I feel so much better for it. I haven’t had tea in over three weeks – I used to drink at least 6 cups a day to keep myself alert, but now I actually feel more energetic and awake.

I feel much more in control now, not like I’m teetering on the edge of a flare anymore, even though some patches have come up in the last couple of days.

Dr Aron is back next week so I’ll send him an update, I imagine he’ll say something about how long I’ve been using the undiluted cream on my forehead, but there’s no point in taking it away too soon and then going back to huge amounts to cope with the full on flare yet again.

Anyway, happy days!

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DAY SIXTY-EIGHT

Where to start…

My skin was absolutely fantastic for 8 days out of 10 during my holiday. Then, on the evening of the eighth day, this happened:

Beautifully tasty, but not quite worth it.

I started to almost immediately flare on my chest, neck, stomach and back, and I knew I was doomed. On our last day, I was really quite itchy (40% of the old itch) and I had a minor breakdown in a restaurant when I realised everything had tomato in it which would make me worse. Then, at the airport, my rucksack was really heavy and the straps rubbed into my shoulders/armpits which made me flare too.

On top of this, the entirety of the back of my legs and bum came up in an itchy rash which made my mum and I panic as we thought it was eczema in the last place on my body that has never yet had it. However, when hives started coming up we realised it was just heat-rash. Thankfully, it went down after about 4 days.

A week later, I’ve (fingers crossed) got my skin back under control, but it’s meant going back up to 5x a day on my neck/collarbone and 4x a day on my stomach, back and chest. Two days ago, I put my stomach and back onto the 3x a day list again, but that means I now have 3 different timings to think about. My day is now run by this:

I do feel like once you get down to the lower apps, flares take less time to go away and less time to taper down again. Makes me feel better about the future, at least.

I’m being more careful to wean myself off the undiluted cream this time, as last time my forehead went from 4x a day to once a day and came out all sorts of crazy. I’ve been on 2x a day + 3 x compound on my forehead and arms (it’s a lot, I know, I know) but dropped to 1x a day + 4 compound yesterday. So far, so good *touch wood*. I hope to get my arms off the undiluted cream asap.

On the food front, it’s fairly obvious from the cocktail that there is some dietary juju in my system. I spoke to a lovely lady from the Dr A support group about her dietary restrictions on salicylates, but unfortunately I don’t fit the bill as my diet was extremely low (rubbish student diet) on salicylates for the first 3 years of my severe eczema. I’ve gone back to low histamine diets to investigate them properly, and I plan on taking this seriously from now until I give up, wimpering softly and pleading for Nutella.

It’s been 10 weeks since I had wine, beer, cider or champagne and 6 days since I’ve had tea. I’m not sure which one of those facts is most impressive.

Photo updates (note, my tan is patchy because new skin is growing over the tanned skin; I haven’t picked up a new disease in the past week and a half. The hyperpigmentation on my back just sorted itself out, though):

 

This is probably my itchiest part right now (lol?!):

I’m going camping for 3 days tomorrow followed by a zipwire through the Welsh valleys, so hopefully the pollen and wind don’t reverse any progress!

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