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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DAY FIFTY-EIGHT

I’m in Cyprus! We’ve been here for 5 days now, and today was the first time we had a proper all-day sunbathe.

I got a bit worried at first because someone on the support group reminded me that to avoid sweat as an aggravator I should stay covered up, out of the sun completely for the entire 10 days. PANIC! But I thought I owed myself a test – this being the first chance to fully relax since my flare began in January – so I tried lying in the sun for an hour with factor 30 on, then when that was fine pushed it to a few more hours and concluded that my skin was not reacting to the heat (perhaps I’m just lucky that there has been a nice, frequent breeze that has stopped me from sweating).

Just before he left for his break, Dr Aron instructed me to use the undiluted stuff on the stubborn patches of my arms, legs and (again) forehead. It was a little flakey for a few days but we’re all good now. No more itchies!

My back is now completely clear, so that has joined the rest of my body in the 3x compound apps a day routine. Five days down and everything seems to be holding up, touch wood! (p.s. check out the holiday pants!)

My skin does get a little dry in the sun, but it’s not itchy at all and I would expect this anyway. I’ve been running up to the room to have a quick shower and reapplying the cream at about 1pm, then after my real shower just putting on base cream instead of after sun to the 3-a-day bits to keep them moisturised.

On thing that is weird is that I seem to be having some big hypopigmentation (less brown, but still able to tan) on part of my thighs and bum but then some small patches of hyperpigmentation (dark spots) on my lower back. Maybe I should be more worried, but if it doesn’t itch, it ain’t a glitch.

Also, I was able to go in the pool today with Dr Aron’s go-ahead, and it was lovvvvely to be able to forget about everything and relax for 20 minutes in the water (then run back upstairs to wash the chlorine off, of course).

I haven’t thought a thing about diet whilst out here (total holiday mode), and I don’t know whether the lack of flare from bad food means I’m barking up the wrong tree with dietary factors or whether the stronger cream is just doing its job.

Honestly, two months ago the thought of going on holiday would have brought up all sorts of dread and anxiety. The last holiday I went on was to Dubai to see my auntie; thank the gods we stayed with her because she’d already navigated the medical system and had some Lipobase to give me when my skin went from bad to worse on Protopic.

On the way back, we had a 12 hour stopover in Paris which should have been great, but I’d expected it to be cold so didn’t pack anything in my hand luggage other than the tight, long-sleeved top I was wearing. It turned out to be 30 degrees, and we cycled around Paris before sitting in an outdoor restaurant for a few hours. I was in so much pain anyway from 7 hours under the plane’s aircon that all I wanted was to curl up in my boyfriend’s lap and wake up at home.

Travelling with eczema throws so many unknowns into your planning; will my skin be good that week, what should I be wearing in that weather if my skin isn’t good, will humidity/heat/cold affect my skin, what will best protect me in the plane, will there be places to go to reapply my creams, will we be able to stop frequently enough to apply creams, will the bedsheets be cotton, is the water soft or hard, what activities can I not do, what if I run out of creams, what if I need a doctor? …Plus a hundred other factors on top of your normal holiday troubles, and as we all know, for many people, stress = eczema.

I haven’t had to worry about most of these things this time round, and that in itself has been a blessing. I feel chilled out, and happy to laugh around with my family rather than sit in a corner worrying about myself. Yaaaaay!

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DAY FIFTY-ONE

Slooooow progress. Very slow. My arms and shins are itchy all over and there are times when I worry the deep itch is back. In my head, I’m screaming “NOOOOOOOOOOOOOO!” but my fingers are like “uhhh that’s so good, keep going, yeah, uh, ooh, up a bit, yeah”. Even the bruises have returned.

But hey, look at how great the skin on my stomach is after 10 days of 3 apps a day:

I’ve been using the undiluted antibiotic+steroid once a day on forehead (which is teetering on fine) and lower back (which is now looking B-E-A-U-tiful and no longer itches at all), plus compound 3x a day. I think I may have read Dr Aron’s instructions wrong and might not be supposed to put the compound on as well, but I now understand my skin enough to know that a drop from 4x to 1x is going to result in me quickly sinking into an abyss of scaly redness.

The rest of me is still stuck on 5 apps a day which is a paaaaaaaain; I’m conscious of the time constraints before steroid use becomes a problem (although from what I’ve read I’m fairly confident that I have a few years before that’s a real scare, and Dr Aron claims never to have seen a case of skin-thinning in his decades of treating eczema patients).

Dr A is on holiday from tomorrow until July, so it’s all me from now on! Not as worried as I probably should be…

The Facebook support group is a fantastic safety-net and I would have been so discouraged without them. Saying that, it can be disappointing when I see kids who started the same time as me with similar or worse severities to be on 2121 by now and I’m still stuck on mostly 5!

Maybe it’s easier for kids because they have a responsible adult to control everything they come into contact with? It’s so easy for me to forget  A few weeks ago I told my colleague I was going gluten- and dairy-free moments after spreading butter on my toast. Well done, Lozzy.

Anyway, I’m going to Cyprus for 10 days to chill with the family so posting might be difficult. The good news is that Dr Aron has approved me to swim in the pool! Toodle doo!

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DAY FORTY-FOUR

Oh shitballs. It’s back. Waaah, I knew going down to 3 apps would be too much for my skin to handle. I’m going to email Dr Aron but in the meantime I’ve taken the initiative to boost back up to 4 apps (with calamine) on the bad areas for the next couple of days, then I imagine it will be a case of 4343 until my skin can cope.

It’s at a point where I can certainly deal with it, but it’s pretty itchy. I’m breaking through the skin on my arms and neck and have bumps appearing on the top of my back, jawline and forearms. Although my shins look clear, they’re probably the itchiest part and I’ve caught myself a few times having a proper dig, complete with OCD counting compulsions, especially after I’ve showered. My skin does not like getting hot and damp, so I’m looking forward to my 10 day holiday to Cyprus which begins next week.

On the positive side, my lower back is lovely and smooth with no itches, and my forehead is hugely improved although not yet completely clear. I’ve been using the undiluted antibiotic and steroid cream for 5 days now so will have to stop in 2. My stomach looks and feels great, as does most of my chest. Rubbing my eyes during hayfever time means my lids are still red BUT GUESS WHAT?! My first eyebrow hairs are growing back on the outer halves; huzzah!!

My elbows have both got weirdly pigmented skin on them but at this point my skin has gone weird so many times I can’t be arsed to worry about it.

I’ve been researching some of the tips raised on eczema support groups and bought some probiotics. Obviously alongside Dr Aron’s treatment their success will be more or less unknown, but every little helps. I also started taking vitamin D tablets just before beginning Dr Aron’s treatment, so I have no clue as to whether they have even the slightest effect and I’m pretty sure this makes me the worst scientist ever. My diet is much better but not as restrictive as it should be were I to actually hone down on eliminating all the things I could be sensitive to. The one thing I’ve managed to stick to (shockingly) is the cutting out of wine, beer and cider. I really miss red wine. Like, really miss it. It haunts my dreams.

But shit, at least I’m sleeping long enough to have dreams…

I wasn’t planning on showing photos of my face to the world from before because it was so confidence-shattering, but I came across this pic and thought I’d do a before and after to give you an idea of the immense difference in how I feel about leaving the house without a bag on my head. The lighting in the second photo isn’t the same, obviously I’m wearing eyeliner (but no other makeup) and my skin now is still not exactly cured, but I no longer suffer any anxiety at the thought of being in public or worry that people are staring because of my condition.

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DAY THIRTY-SIX

Well, my arms and trunk are doing fantastically, but Dr Aron has decided I need something stronger for the stubborn patches on my lower back and forehead, so he’s prescribed undiluted antibiotic cream there 4 times a day for a week. Seems like a lot…

However, he’s said that he’s happy with progress on the rest of my body, so I can drop down to 3 apps a day of the compound for the next 2 weeks, with calamine as and when I need it. I’m pretty scared; 5454 has been going well but I don’t really feel ready to decrease apps to 3 just yet. 

Still, I’ll do as he’s instructed and maybe pop an extra app on parts that start to flare again. Wish me luck!

Hayfever might be playing a role in my eczema now; yesterday my eyes were itching and watering badly which caused me to rub them all through the day, so now the skin there is dry and sore.

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DAY THIRTY-TWO

Yay, feeling much better today  Last night was itchy again but the skin is way less red. The only real itchy parts are my lower back, shins and head. Calamine before cream is working a treat.

My skin is a little scaly and dry but I prefer that to the red bumps I had. I always find my skin looks and feels a lot better in the morning, maybe because I’ve been wrapped in a tight little cocoon all night, away from exposure to anything my body doesn’t like. By evening, I’m always twice as itchy and counting down the minutes until I can put on my last application and go to bed.

I’m still on 5 apps a day but have had a few days here and there of 4 apps where work commitments have meant I haven’t been able to fit all of them in.

Putting on cream at work is mostly a non-issue, but I am always conscious that it takes 15 minutes out of my day each time and I have to hog the loo. The toilet is right next to the CEO’s office and I’d be surprised if he didn’t think I had some sort of bowel problem… As for ‘wasting’ company time, this is by far the better option when you consider that just before I found Dr Aron I’d been booked in for a consultation for light therapy in a hospital 45 minutes away from my office.

I’ve also mastered putting on cream in the passenger seat of a car which has been extremely handy…

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