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.

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!

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!