Paul & Sue Hazelden
- Paul's Eczema -


Introduction

  Purpose

This page is mostly written with another eczema sufferer in mind, although it should be of interest to people trying to help eczema sufferers. I have been deliberately personal at times, trying to get a helpful balance between factual information, feelings and personal history - with eczema, it is the person who matters most, not the skin condition.

  Disclaimers

I ought to start with a couple of disclaimers. I am not a doctor or medically trained, simply someone who has lived with eczema all my life. And one thing is clear about eczema: everybody's body is different. What works well for one person can be useless or unhelpful for another - so whatever works for me, I can't promise it will help you.

I am aware that aspects of what I have to suggest run against normal behaviour and the usual advice given to people with eczema. But it's not likely to kill you, and it might help.

  General Approach

As far as possible, I determine to live my life as I want, and the eczema has to take second place. I don't want to even try cures or treatments that would prevent me from getting on with the things that are important in my life. Life is for living, and eczema is just one of those things I have to take into account, like the need to eat every now and then.

The other basic principle is to avoid medication (as in drugs) whenever possible. Apart from moisturisers, I use as few ointments as posible, and use them sparingly. If an area is not clearing up, but not getting worse either, every now and then I stop using the medication to see if it starts to get worse: if not, then I stop using it, otherwise, I start again. There seems to be no way to predict these things, so it's just a case of experiment and see.

That said, I try to be fairly sensible. I rarely use a bath, and use E45 Wash (wonderful stuff, and not available in nearly enough chemists!) instead of soap when I shower. Whenever possible, I sauna to get clean, and shower to rinse off after the sauna (no soap!) - this is the perfect way of getting clean with my skin.

My Story

  In the Beginning

I developed atopic eczema at an early age: a few months old, at about the time I was weaned. From then on, my skin condition had a major effect on my life and on my parents.

Most eczema sufferers will recognise the constant visits to doctors and clinics, the constant searching for a treatment that will work. In my case, this was not the worst the medical system could do: early on, it seems that someone decided that my condition was caused by stress at home, and as a young toddler I was sent to a clinic in Devon without my parents. We lived in London, so perhaps it was chosen to be far enough away to make visiting difficult for them.

I dimly remember the horror of being abandoned in the clinic. My parents remember the trauma only too well. At one point they were allowed to visit, and we went for a walk. They say I walked very happily up to the point when I realised we were going back, when I sat down and refused to move. They had to carry me back and leave me again.

The emotional damage of this episode was the worst aspect, of course. It couldn't even be justified on the medical level - the eczema cleared up on one part of my body and flared up on another, so all the suffering left us no better off. This was in the late 1950s, and I trust that nothing as barbaric would be done today.

So life continued as a succession of useless visits to doctors and clinics. I cannot believe that the single most important and useful piece of information about eczema - the existence of the External Link - National Eczema Society National Eczema Society - was never mentioned by any of the dozens of professionals I encountered over the years. A work colleague told me about them when I was 24. I joined immediately, and they have been a source of help and encouragement ever since.

  On the Beach

As a child, my family went to Cornwall for our holiday each year. The condition of my skin used to vary a lot, so it took a while before we realised that the holiday coincided with a significant improvement each time.

The first half-week of each holiday was agony. I refused to let my skin keep me out of the sea, but the salt water in the raw, irritated and bleeding skin was pretty bad. But I wanted to go surfing like everyone else, and, after all, it was only pain. And after the first few days, the areas that hurt started to grow smaller.

We all used sun screen, but it was probably not as effective as the ones on the market today. In any case, we would generally discover skin gently peeling away after the first few days on the beach. I remember feeling how nice it was to have skin coming off so easily.

So sun and sand helped. We assume that part of the problem with eczema was infected skin, and the sea had an antiseptic effect. Sun and wind on my skin probably hindered the growth of any problematic bugs as well, but I only see that now with the benefit of hindsight.

At the time, apart from the one holiday each year, I stayed covered up as much as possible. For example, I almost never wore short-sleeved shirts - especially as a teenager, when I was more concerned about how other people would react to the sight of my skin.

  A Question of Stress

One oddity I have noticed over the years is that many people seem to have a fixed belief that eczema is stress-related. Over and over again, people have asked me questions about stress - sometimes directly asking if it got worse when I was under stress, and sometimes asking a whole series of questions about my lifestyle which were clearly designed to help me see for myself how stress was causing the problem with my skin.

All I can say on the subject is that, in my experience, eczema is definitely stress-related: the more stressed I become, the less I am bothered by eczema. For the most stressful year of my life - the final year at university - I was almost free of eczema, and other periods of high stress have also seen an improvement. Don't ask me to explain it.

  Enter the Sauna

A few years after leaving university, I spent three months in Finland. Baths and showers were out of the question - there were none in the places I stayed. If I wanted to get clean, the sauna was the only option.

It took a while to spot what was happening. My skin was generally fairly good at this point - it was another very stressful time, and so the eczema had cleared quite a bit already. But I started to notice that my skin was soothed and calm after a sauna, and I could sleep really well.

People with eczema generally react in horror to this: they can't imagine using a sauna. They say things like, "I can't stand hot weather!" But a sauna is not like being hot, sticky and uncomfortable. I know that feeling well, and it is totally different. In the sauna, alternating between hot and cold, you can really enjoy and relax in the heat.

  Benefits of the Sauna

Sleep had always been a problem. I lived most of my first 30 years on adrenaline, constantly either on the move or reading, keeping the mind active. Even now, if I stop for some reason, I tend to fall asleep - just a habit, built up over the years. Those of you with eczema will know what it is like: to be in bed, desperately tired, but unable to sleep because of the itching. The rest of you, don't even bother to try and imagine it. This was my experience every night, with almost no exceptions.

Getting clean has also been a problem. Fortunately, I have very little body odour. I would take a bath once a week, as that seemed to be the socially acceptable minimum. Both baths and showers left my skin irritated, so I would have a bath in the morning, to give my skin as long as possible to calm down before attempting to sleep.

But after the weekly sauna, taken in the evening, my skin was calm and relaxed, and I would sleep soundly - at least, much more soundly than usual. It was wonderful.

  Back in England

Some time after returning from Finland, I got a proper job, working as the assistant manager at the University of Surrey bookshop. It was easy to do well, as most of what I needed to do came naturally. Life became much less stressful, and the eczema started to get worse.

Eventually - I think it was in the Spring of 1981 - it got so bad I needed to take a week off work. My doctor made me an appointment with a skin specialist, and my legs were wrapped in impregnated bandages - "This may sting a bit" - and I walked home (no car yet). By the time I reached home, the pain in my legs was intense, and it continued to get worse. Painkillers seemed to make no difference. If my legs had been in a literal fire, I can't imagine it could have hurt any more, and at lest the nerves would have been burned away after a while. Somehow, I got through the first night, and slowly the pain subsided. Most of the next week was spent in bed... I won't give the full details, but it was pretty grim.

Slowly, things started to improve. I crawled back in to work. Sue, who had moved down to Guildford by this time, started to get serious about 'finding a cure', and at times this was more difficult than the eczema itself even though the desire to help was very much appreciated.

Some months after this bad episode, the appointment my doctor had made with the specialist at the local hospital came through. The consultant looked at my skin, and told me it wasn't too bad. I have seldom been so furious in my life, I was incapable of expressing how I felt at that point. I knew it wasn't too bad then. I had needed to see him when it was bad! I was told to go away and come back ('Make another appointment') if it got worse again. What was the point? I think this was the point I finally gave up on the medical profession.

  A Milk-Free Diet

After a while, Sue persuaded me to try an exclusion diet to see if I was alergic to anything, and at this point we quickly found that I reacted to milk and milk products. Cutting out milk made a significant difference to my skin, and I started to use kosher margarine on my bread.

There was a downside, however. Two, in fact. Within minutes of eating something with milk in, I would have a hot flush and my skin would start to itch. Sometimes Sue would deliberately slip a little hidden milk into my food, in the spirit of scientific enquiry, but I always reacted. It was quite clearly a physical problem, not a psychologiucal one.

This made socialising very difficult - the second downside. After a while, we discovered that we could only safely go out and visit people who knew us very well, and who understood which foods contained milk. You won't believe the number of times we went out, having warned people about the milk in advance, checked the ingredients too late, only to be told "It doesn't matter - it was only a tiny amount."

  Back to the Sauna

I discovered the local Sports Centre had a sauna suite, and (as part of the 'we must do something about this problem' project) started to use that on a Saturday night. Friends started to join me, and for several years we had a regular social event in the sauna suite each week. It was tremendous fun, and great for my skin.

After a while, a new Leisure Centre replaced the old Sports Centre, and the new gym changing rooms had sauna cabins in them. This had the advantage that I never needed to wear a costume, whatever time I used the facilities, but Sue and I couldn't sauna together any more. There was a mixed steam room, but it wasn't the same - we used it a few times, but after a while I continued to use the sauna for the sake of my skin, and Sue just stopped completely.

Some time later, we discovered that there are naturist saunas all over the place, and these included two fairly local weekly swim and sauna sessions at Alton and Bracknell - which were both places Sue could sometimes join me in visiting. It was really nice, after a gap of some years, to be able to sauna together again.

  No More Allergy

Our friends and the folk in our church regularly prayed for me to be healed, but time after time nothing happened. It was very frustrating for Sue and me, and I know it was very difficult for many of our friends.

However, after one evening service at our church I went forward for prayer. I don't remember anything special about that service: Michael Fenton-Jones was preaching, but he used to come from time to time. It seemed right to ask for prayer again, but I had no reason to suspect that this time would be any different from any other.

Someone started to pray for me, and almost immediately, I fell down. It was as if I was no longer connected with my body - I was vaguely aware of what was happening, but it seemed to have nothing to do with me. I started to fall towards the overhead projector. I knew I was going to hit it, but that wasn't a problem. Then (as I subsequently understood) two people leaped into action: one pulled the projector away from me, and the other caught my body and just stopped me from hitting the table it had been sitting on. They made me comfortable on the floor, and a number of folk continued to pray for me. After a while - maybe 20 or 30 minutes - I slowly started to remember how to use muscles to control my body again. It is all rather hazy. I think my body had been shaking (trembling, or shivering, perhaps) for most of this time, and someone praying for me had a picture of an event that sounded very like me when my parents left me at the clinic in Devon - something they knew nothing about.

Strangely enough, after this fairly dramatic event, nothing seemed to be any different. But we decided that God must have done something, and I took some milk. No reaction! It's hard to describe the relief.

Things never seem to go quite the way you expect, though. It became clear that I had been healed of my allergy to milk, but not completely healed of the eczema. Why? I haven't the faintest idea. My skin was as healthy now I was drinking milk again as it had been while I was not drinking it. Maybe a little better, but not a major improvement.

  And Now?

Since then, a regular discipline of swimming, saunas and moisturisers, with the occasional dab of diluted steriod cream, has mostly kept my skin in reasonable condition. For several years, a small patch on the top of my right foot was the only evidence of the problem. Then, for another year or so, it was the patch on the foot, plus some dry and flaking skin (I do apologise...) on my scrotum. As this was clearing up, a small patch of weeping skin appeared on the outside of my right calf.

The patch on my leg started spreading in the Spring of 2004. Things often got worse at some point in the Spring, so I didn't worry much about it at first. In June, I spent some days in Glasgow, and suddenly developed real problems with the skin on the soles of my feet and under my little toes, and walking became very painful.

In the Autumn, the problem on the right leg also appeared on the left, and over the Winter it spread up to the undersides of my thighs. This was all very odd: traditionally, eczema has appeared mainly where the skin flexes, inside the elbows and knees for example, but those areas were fine (apart from the little toes!) and the rest was starting to disintegrate.

Apart from the increased difficulty sleeping, the biggest difficulty was the weeping skin underneath my thighs: it became very difficult to sit normally in a chair, and I found myself lounging on the edge of my seat most of the time. It doesn't give quite the right impression when you are trying to be businesslike.

The Doctor referred me to the Dermatology Nurse, who prescribed various other moisturisers and emollients, and some stronger steroid cream. This improved things a bit, but then the condition stabilised. It didn't get worse, but wasn't really getting any better.

After more blood tests, I was referred to the hospital for light treatment, which proved remarkably effective, as well as giving me what is probably the first healthy looking tan in my life. Since the treatment ended, my legs have deteriorated a little, but they are still far better than they have been for some 18 months.

In reserve, if the light treatment didn't work, was the possibility of using some scarier drugs. Two that were mentioned for consideration were External Link - Ciclosporin Ciclosporin and External Link - Azathioprine and Mercaptopurine Azathioprine and Mercaptopurine.

Several people have asked why my skin got worse in the past couple of years. Is there more stress at work? No. However, at about the time it started to get worse, I started to experience hot flushes. Don't laugh. I would suddenly start sweating all over my body for no good reason. Possibly this started to irritate the skin. The Doctor did various blood tests, and concluded that my testosterone level was abnormally low. I saw an Endocrinologist in November 2005, she took some more blood, arranged for some more urine collection, and I went back to discuss the results in February 2006. The skin and the sweating may just be a coincidence, but eczema is like that: we will probably never know.

Thinking About the Problem

  What is the Problem?

I continued with the saunas, used moisturiser, and generally tried to be fairly sensible. Over the years, I gradually came to realise that the sauna was sometimes more effective and sometimes less effective. And the difference was quite the opposite of what I had expected.

All through my life, I have been told: "don't scratch!" A great deal of emotional energy was invested in not scratching. "When you scratch, you damage the skin, and damaged skin is the problem." I have heard this from well-meaning friends, relatives, doctors - almost everyone, in fact. I now believe it to be deeply misleading.

Of course, if I scratch and damage the skin, the damaged skin is a problem. But it is not the problem! The problem is eczema. This distinction is important for a number of reasons.

Firstly, I had the idea that I was causing my own problem. If I wanted clear skin, all I had to do was to stop scratching. Simple, but false. If I am having problems with a patch of skin, even if I avoid scratching it, sooner or later I will find that something knocks that area, or rubs or scrapes it. That's life. This is what skin is there for. And when that happens, the skin starts to bleed, weep, or whatever. It happens whether I scratch or not. I can make it worse, of course, but I can't actually make it better.

More than that, I have problems with patches of skin that never get scratched or knocked - for example, a small patch on one foot that persists right through the Summer, when I wear sandals that don't touch it.

And secondly, I had the idea that if I were to manage to stop scratching for long enough, the skin would heal and I would then be fine. It sounds plausible, but things don't work that way. A patch of skin could be free of eczema for years, and then one day I wake up and it is red and weeping. Other patches clear up after years of trouble, without any change in treatment or lifestyle on my part.

  A Surprising Answer

What I came to recognise was this: when I was really, really good in the sauna, and avoided scratching at all, the sauna was of less benefit. You may want to re-read that last statement. I was (and still am) in a worse condition after no scratching in the sauna than I am after a moderate amount.

This took me a long time to recognise and work through. I had lived for so long with a simple formula - scratching: BAD; no scratching: GOOD! - that the connections between cause and effect just could not be made. The reality, as I see it now, is that scratching is more like alcohol. It can be very bad for you, but a moderate quantity in the right circumstances it can also be quite beneficial.

PLEASE listen to what I am saying, and not saying. I am not saying that scratching is all right, or that it doesn't matter. It can damage fragile skin quite badly. But it doesn't have to do any harm - not if you are careful and understand the way each part of your skin responds to different types of stimulus.

What is going on? I think there are several things.

First, the problem with scratching is that it damages the skin. In the sauna, the combination of heat and damp has the effect of loosening the outside layer of dead skin, so that gentle scratching can remove it without damaging the newer live skin underneath. The steam baths in Roman times used to be equipped with scrapers for the purpose of removing this layer of old, dead skin. It seems to me they had the right idea.

The key point is, of course, that the scratching be gentle. And if the skin is inflamed or damaged, even gentle scratching can be harmful. But for me - and, I believe, for most people with eczema - for most of the time, most of my skin is not inflamed or damaged. There are areas I need to be careful to avoid, but large areas are not harmed in the slightest by a gentle rub or scratch in the sauna.

Second, we usually scratch because the skin itches. But what causes the itching? There is no one answer, but I am convinced that one reason why it feels like small insects are crawling over my skin is because too much dead skin on the outside is still attached to the live skin underneath. The dead skin does not stretch in the same way that the live skin does, so the live skin is constantly receiving little tugs from the dead skin above it. Certainly, when I remove the layer of dead skin, most of the itching goes with it. And when I sauna without removing that layer of dead skin, the relief from the itching is much less.

I should probably point out something at this point - apologies for having to be slightly indelicate! - this relief from itching is one very practical reason why a nude sauna is much better than a costumed one. Wearing a costume keeps my genital region at a much more constant temperature, the skin of my scrotum is not exposed to the sauna in the same way as the rest of my body. Moreover, it is not exposed to the same gentle scratching. As a consequence, that part of my body itches more than the rest after a sauna when I have to wear a costume.

Third, I would imagine the sauna has much the same antisceptic effect as salt water and sunshine used to on the beach. The skin is cleaned in a much more effective way than can be achieved by either a bath or a shower. A great deal of the problem with eczema is not the eczema itself, but the minor infections that go with broken and bleeding skin.

Again, this is another good reason why a nude sauna is better than a textile one: the heat kills the bugs on your skin, but if you wear a costume the covering keeps your skin much closer to body temperature and the bugs on your skin are not killed off. The bits you cover up don't get properly clean. And when you have eczema, this really matters.

And finally, the traditional description of the effect of a sauna is that it increases the blood flow in and near the skin. This must produce some beneficial effect on the health of the skin. Gently rubbing the skin also seems to stimulate the blood flow and hence increase the benefit. It is traditional in the Finnish sauna to hit yourself with Birch twigs, and this is a gentler alternative.

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