Day 61 – Giving up Facebook / Lactose / Hiatus

For the next four weeks I’ve made the decision to put this blog on hold – I’m doing what-sounds-like an extremely intensive course, and I’m wiping out all my other commitments for it.

A couple of reflections on the last 61 days. I’m still, overall, delighted that I’ve managed to limit myself to only using my weakest steroid (Hydrocortisone Ointment 1%) during this time, and the eczema’s never got *that* bad. I think I can safely say now that I’ll never again think about going back to Protopic, and will have Elocon as my last resort.

How have I managed to stick to the Hydrocortisone? A combination of things, I think – when I have managed to follow my eczema diet I’m not sure it’s prevented me from scratching, but I have noticed that in general if I’m taking better care of myself then the skin heals faster, and that is reason enough for progressing with it. Whether I…believe in the diet enough to keep going with such destructive decisions as giving up wholewheat bread, I don’t know…

As part of my deal with myself RE pausing the eczema blog, I’m going to give up Facebook for the next weeks also. Although I’m not 100% cynical about it (I have watched and listened to a great number of wonderful things that I wouldn’t have seen were it not for Facebook), it EATS time, and when stress is a huge trigger for me I need to be using my time as efficiently as possible.

A quick word on lactose – I spoke to my father’s cousin the other day about my eczema etc. He relayed his relationship with lactose intolerance. He was having ongoing stomach problems and noticed that when he was in South America (where there is very little milk consumption) the problems went away. After some experimentation, he cut out the milk and was cured for good! Lucky for him. Especially in the first half of my 60-day period I’ve come close to completely giving up cow’s milk and cheese, but note that I’ve been eating sheep’s yoghurt every day…and it also has lactose! So… I think after the next month when I jump back into this diet manipulation stuff I’m going to have a go at cutting out all lactose from my diet and see what happens…

Well, ta ta for now, wish me luck (and no scratching) during my course!

Day 60 – Hard Floors

Roll into bed 2:30am last night after a (very pleasant) night on the beers hanging out with my brother and sister after what feels like an eternity.

So alcohol level high, I ate late, fast, and with cheese, my skin had rather dried out over the day, and I was sleeping in a new place – all normally triggers.

No scratching at night. A scratch free night. It was almost impossible in the last few nights at home…but here…scratch free…why?? What is going ON?

Possible reasons:

1) Hard floors – my brother’s new apartment has hard floors and is rather un-dusty. The sofa I was sleeping on was plastic leather…which is rather un-dusty…and my duvet was a nice material…I think cotton, maybe.

2) (Boring) My use of steroids yesterday morning. Although, and I’ll keep saying it, I am only using the weakest form of steroid I’ve been prescribed (Hydrocortisone Ointment 1%), and this is against the advice of my dermatologist who said that they only recommend that one for the face. My idea that, as I’m using far weaker steroids far less often now, their effectiveness has increased substantially is again strengthened.

3) I did consciously make sure I relaxed properly before trying to sleep – I’ve noticed that many of the times I’ve scratched in the night I haven’t switched off properly before sleeping. Yesterday evening I took a good few minutes to digest all my thoughts and file them away for the morning. Maybe it worked…

4) (Unlikely) My lovely Epic Salad from Day 58 (described on Day 59) turned out to be a good idea after all…

Day 58 – Tread Water

I think I’m coming back to, or arriving at, a “treading water” phase – where I’m hopefully holding all of the things I’ve given up at bay, and also using steroids but infrequently…and at low strengths.

Today I was in a foul mood and did have some scratch outbursts…mid afternoon was the one. Last night was kind-of horrible. But no steroids today, so that’s three days clear. I’m going on another trip tomorrow for a couple of days and imagine that it will be another challenging time for my eczema – so I’m going to have a dose of Hydrocortisone 1% beforehand tomorrow morning to try to clear up or calm down my current patches (they are, from most to least severe, lower back, hands, back of my knees, neck, elbows).

I still have no idea what’s really going on in terms of steroid withdrawal… I don’t want to go cold turkey on steroids, for fear of ending up with infected eczema, and because I don’t think I’m comfortable controlling it yet…but there is also a part of me that is concerned there’s something to the militant anti-steroid brigade’s accusations that steroid ointments get trapped in the fat in your skin, and will keep *causing* problems until you completely stop them.

Before I go completely cold turkey with the steroids though, I need to get in control of my stress levels…and looking at the time ahead I can’t see when this is going to happen any time soon, which is a reasonably bleak outlook, but the way things are…

Oh yeah, I should confess I succumbed to some banned substances today – I had two Twix bars, and had some wholemeal bread with the (delicious) dal I made for lunch. Either, or both, of these could have contributed to my afternoon scratch attack – which I seem to have recovered from reasonably well…ish.

Good night! Wish me scratchless dreams.

Day 55 – Time

To relieve the sleep deprivation and mild hangover of yesterday’s disastrous video game marathon, I had a coffee this morning. This neatly takes me right back to Day 1 of my eczema diet, and in a way I’m ready to start again.

There are interesting time/convenience implications of using my various creams and oils. On the morning of Day 55 I found myself with 30mins to have a shower and apply whatever treatment I was going to before I had to teach. My skin was in a pretty disastrous state, and I religiously would apply *something* moisturising after a shower. Shea butter is the ticket, but it takes forever because of the consistency of it…so thick! Hydrocortisone was inevitably going to have to happen on Day 55, but I’ve been advised by a dermatologist not to apply it straight after a shower. Dermol cream is another option, but it doesn’t really give any lasting relief. (I don’t like Dermol anyway, I’m tending to use it just to prevent infection *right* after a scratch attack).

So the only thing left in my arsenal that I’m using at the moment is coconut oil. This is supposed to be nourishing for the skin, which is what it needed, but it doesn’t provide as much instant relief as shea butter. I’ve also noticed that coconut oil is much less useful at stopping scratching in the middle of an attack, which is interesting. Anyway, it works perfectly in this scenario – after a shower I find it is “drunk up” by the skin much more easily, and in this case I didn’t feel like scratching (even after an almost unprecedented amount of coffee – I had three…I didn’t tell the whole truth earlier).

The rest of the day was spent recovering. I applied hydrocortisone everywhere – but, as always, just the 1% stuff, the absolute lowest strength steroid they prescribe… At the moment, even with my complete failure to abide by the eczema diet of late, I’m still getting away with only using hydrocortisone once every 3 days or so – not too bad at all, I’m delighted I haven’t used anything stronger for almost 2 months now. Something is working. Now, just need to get back on track with that diet…

Day 52 – Quinine

So, in keeping with my disastrous diet record over the past days, yesterday evening I met up with an old friend and decided to sod the eczema and get incredibly drunk. Two pints, and three double-gin-and-tonics. I felt rough this morning, but no scratching. WHY? Possible explanations this time:

1) The quinine in tonic water has some miracle affect on eczema

2) The Hydrocortisone 1% I used on the morning of Day 52 had a super effect lasting right the way through to the next day.

3) I relaxed! Good-spirited drinks, no alarms and no surprises, as they say…

Well, whatever is going on I need and want to get the hell back onto my diet and back into good health and good skin. The skin’s OK at the moment. There was a disastrous outbreak of scratching the night before Day 52 – I couldn’t sleep from scratching so much, and hit a bit of a low point psychologically. But a shower in the morning followed by immediate application of Hydrocortisone and then shea butter about 20mins later seemed to do the trick, this time.

Day 49 – Gay Pride

As I’ve done the last couple of years I went down to Gay Pride in Brighton yesterday. Not necessarily my idea of a perfect day out, but there is a super atmosphere there and it was a nice chance to catch up with my cousin who lives there.

Eczema-wise, I knew it would be chaos. Trying to find healthy food whilst rushing around following the group we were with on a long-distance pub crawl was almost impossible. I also couldn’t resist the temptation to drink, or to take (a little) marijuana as it was passed round. I’ve noted before that the first time I enter a place (getting home, entering a restaurant, getting on a train…) is always a dangerous time for potential scratching (I don’t know why, perhaps it’s to do with the disorientation of a new place putting my stress level up a bit?) and so a pub crawl would perhaps seem like it would be disastrous in this respect.

How was it? Fine. No scratching, almost none at all.

But…as always…WHY?

1 – The boring reason. I knew the day was going to be a difficult one eczema-wise and used my weakest steroid, Hydrocortisone 1%, for the first time in 5 days, as a preventative measure.

2 – Knowing about the unhealthy times to come, at about 11am I ate a plate full of steamed green vegetables and carrot. Maybe that helped.

3 – I kept my blood sugar under control. I’m now very interested in whether peaks in blood sugar are causing scratching. I dodged all the sweeter alcoholic drinks (except for one jagerbomb…ugh…) and avoided getting cokes etc.

4 – Wishful thinking perhaps, but feeling relaxed under the influence of the marijuana MAY have contributed to me being less inclined to scratch. Perhaps that’s just insane though.

5 – I left early (well, 11ish) so it wasn’t a spectacularly late night.

6 – I made sure I didn’t have to do anything early the next day – I think that worrying about having to get up early to do stuff can lead to me scratching at night.

Today with the hangover etc. I have scratched a bit, but it’s been very controllable. I’ve ate healthily  – my super breakfast recommended by Oracle, followed by an onion-spinach omelette with an avocado, rye bread, houmous, and goats cheese – which has probably helped too. And, of course, no caffeine.

Well that’s about it for yesterday. More later.

Day 48 – Recovery

Horrendous scratching last night left my skin badly damaged this morning.

As the hours went past today and I didn’t feel like scratching I felt less and less inclined to use my Hydrocortisone 1% and allowed the skin to recover peacefully. I used shea butter after a (slightly painful) shower in the AM, then coconut oil at about 17:00 before a nap to recover from my horrendous lack of sleep last night. So far…it worked! No scratching, except the back of my neck, which is a massive success.

Reasons for lack of scratching? I’ve been controlling my blood sugar more carefully than I was when I was in Romania, I’ve forced myself not to get stressed today (even though I got lots done), I ate huge amounts of green veg for lunch, I pre-prepared myself for the damage of yesterday’s flight by stocking up on vitamin C (a bell pepper yesterday, plenty of lemon, a berry smoothie on arrival at Luton airport at 23:00 yesterday…)…no caffeine obviously…didn’t eat too heavily at lunch…yeah, good stuff.

Washed blood-stained bedsheets today – this is the most demoralising sight for me, and causes me real upset. Anyway, better now with these clean ones.

Ahhh starting to scratch now. Right, better go to sleep. Night.

Day 47 – Airplane!

Back on a plane yesterday. Very late flight.

Generally a stressful day, with packing etc. Scratched mid-afternoon because of the stress of packing. Scratched again later in the evening. Had a margarita and a beer before the flight (ill-advised, but I was celebrating…I dunno what…life?)…

After the beer I didn’t scratch at all for a long time, even when the airline made us wait for what felt like an eternity while the plane we were taking arrived and the previous passengers disembarked etc… Got on the plane. As soon as the seatbelt sign went off I went to the bathroom and applied shea butter everywhere. The rest of the flight was scratch free (except for when I got a little stressed during the landing – although this was probably more to do with the book I was reading, which I was struggling to concentrate on), but flights are normally scratch free at the time. The damage is done afterwards.

So, three-hour flight beginning at 22:20 Romanian time. Got into UK at 23:30ish, think we must have made up some time en route. Got a coach reasonably fast to London. Had an outbreak of scratching on the coach, but this was just my elbows and hands and I was reasonably satisfied I contained it.

Because London’s so bloody big and the tubes weren’t running I didn’t get home until 2:30am UK time, which would be 4:30am Romanian time (i.e. my body clock). As I went in I remember thinking “now is a danger time – mustn’t scratch”… Got in, did some essential things, brushed teeth. Got into my room, and saw I’d left it in a terrible mess as I’d left in a massive hurry…and that was it, the final trigger. Cue a huge, damaging scratch outbreak. I was so close…

Eczema is calm this morning, but my skin is very sore. And I only had 4hrs sleep because I had to wake up early. I’m wondering if it’s bad enough to use my Hydrocortisone Ointment 1% as an emergency…right now I think I might leave it one more day before a usage, and then I will have used it only twice in ten days, which is great considering I’ve been boozing and flying.

In my eczema-trigger-monitoring spreadsheet I’ve added up all the scratching outbreaks that could be related to an unusual spike in blood sugar, and found that I’ve had a blood sugar peak in 66% of the outbreaks I’ve monitored. More on this later. Now…sleep…

Day 44 – Aftermath

Looking interestedly at my hands now, following last night‘s disastrous outburst of hand-scratching. There’s less redness than before, there are three holes that have now stopped weeping fluid (thank god) and I have little desire to scratch. Are they calming down as a result of today’s Hydrocortisone intervention and long afternoon nap? Or is the eczema in a falsely-induced coma, storing the cortisone in my body fat in order to react worse the next time I try to withdraw? I suspect some combination of the two, and continue to (on balance) be happy that I’ve only used my weakest steroid for well over a month now. Even if the cortisone is getting held by the skin and will, one day, have to be painfully washed out, I still think that it’s not a bad idea to use it to bridge the gap off steroids…

Ate pufuleti (a Romanian corn-based snack, very very light, but salty) instead of biscuits this eve. As described before I’m wondering about the connection between spikes in blood sugar. This theory would be backed up if I don’t scratch tonight…although…if I didn’t scratch tonight it would certainly be linked to me using the steroid ointment…ahhh so complicated.

Pufuleti aside, I ate healthily today. Was particulary pleased with my veg filled tuna-salad-plus-potatoes dinner, and the “apa minerala” (carbonated water) I had with squeezed lemon…pretending it was Prosecco…

Day 42 – Current Theories

To balance the negativity from my Hack Rant two days ago, here are some more positive thoughts about what might be exacerbating, and helping, my eczema.

Topical Steroid Withdrawal – One bit of cynicism I’m really struggling to get rid of is about this idea of cortisone being stored in your skin somehow, that you have to go completely cold turkey in order to “detoxify” yourself, and that whilst this happens one’s eczema gets much worse. Oracle was completely convinced of this, but I’m not so sure. It just a) seems really convenient for the advocates of a solution to say it makes the problem worse before it makes it better, and b) is a bit scary – I don’t really fancy seeing my eczema plunge back to it’s previous depths before it recovers, frankly, and would rather temper the “comedown”.

However! Since I started using the shea butter my face has been generally brilliant, even as the rest of my body has passed through one disaster after another. And…get this: I have never really used steroids on my face, out of concern for thinning the skin. So this does seem to be fairly decent evidence in favour of the steroid extraction theory described above.

Stress – I’ve now measured 20 serious outbreaks of scratching since 3rd July, that’s just under one per day, and as described before I’ve been measuring my level of stress immediately before each outbreak. I have never recorded a scratching outbreak where I’ve measured my level of stress to be lower than 7 out of 10 beforehand, and the mean is 8.4 out of 10. I think this is a pretty impressive statistic. How to reduce stress whilst being self-employed, however, is another problem in itself. My seven day “stress detox” basically didn’t happen. I picked the wrong time for it, perhaps. I knew this seven day period was going to be heavily stressful before I started. More work to be done on the stress thing, for sure.

Blood Sugar (Sex Magick) – Since my trip to Romania started, it’s been almost impossible to control my diet. I haven’t been able to get hold of rye bread, or even wholemeal bread, so I’ve been eating lots of white bread, some cheese, and some cow’s yoghurt for the probiotics. I have managed to avoid caffeine, for the most part, and have avoided chocolate.

One thing I have had a few times is biscuits, and note that 100% of the times I’ve eaten biscuits I have had a serious scratch outbreak soon afterwards. This makes me wonder, again, if peaks in blood sugar are having an affect on my scratching.

Scratch locations – I’ve also been thinking about the different locations I scratch. I’m interested in the order of them (which ones I start with, and which ones the itch gets “chased” to), the severity of the scratching, and the speed with which they recover. So:

– the back of my neck is the worst, in that it’s frequently the first place to get “hit”, takes quite a while to recover, and is victim to serious scratching where I really dig the nails in 😦

– the base of my back doesn’t get hit very often, but when it does it is very severe and takes forever to recover

– the backs of my knees take a couple of days to recover, aren’t hit very often, but are hit quite severely

– my lower legs are very rarely scratched, and recover reasonably quickly unless they get infected, so they are a dangerous place

– my hands take a few days to recover, and are particularly prone to continued abuse even when they are already bad

– the backs of my elbows are an immensely pleasurable place to scratch, and take a long time to recover

– the insides of my elbows get red and inflamed, but the skin is rarely broken, which is interesting their recovery time isn’t too great though.

– my jaw is a favourite place to scratch first, but recovers very quickly and the skin rarely breaks

—

Well, that’s all for now, folks. Oh yeah – after today I will have only used my hydrocortisone ointment 1% once in the last week. I will have had a 4-day run of not using any steroids, and could go for my record, which is 8 days.