Thursday 6 November 2014

The wait is over...

I have finally found out what causes my eczema. After all these years of having terrible, painful, itchy, bleeding, embarrassing skin on my hands I have found the cause. I've had it since I was a baby and rather than improve as I got older as is common it got worse. 

Incredibly it completely cleared up when I was anorexic in my early twenties. Naively I thought it had gone for good but once I had made the tremendous effort of managing to eat and was getting better the eczema came back with a vengeance. It was slowly creeping back for a long time. I first noticed it one day at work. I thought my skin looks as though it is glowing red from the inside. I tried not to think about it and just hoped it was something else and would get better. It didn't and the swelling started. I gradually started to get more worried but didn't know what to do so tried to ignore it. I switched jobs and remember not long after I started came the day when I knew with certainty that the "curse" as I call it was definitely back. My skin all over my hands was swollen and bright red like glowing torches. Bizarre and very uncomfortable. They itched all over. I felt devastated. I felt as though I was having a panic attack. Eczema and not knowing the cause has always been a great source of anxiety for me and now my anxiety went into overdrive. I couldn't stand not knowing the cause. To say I was obsessed was an understatement. Of course because of the timing I thought it must be something I was eating so I went through the laborious task of eliminating various foods from my diet. Not something I needed to be doing just as I was recovering from an eating disorder. I also had blood tests for food allergies but nothing useful came up. I had a skin patch test when I was a child but it showed up nothing of any apparent significance. 

So in my not so healthy mind and out of desperation I decided to stop eating to see if my skin would clear up again. It did. After about 4-6 weeks my skin looked good. Not 100% like before but much better. My anxiety was sky high with the hunger. I didn't sleep well which further exacerbated the anxiety. I would go over and over in my head what the cause could be. It was on a loop and I could not stop it. It was literally all the time. My OCD had taken full advantage of my hungry state and had got me good. The only time I would think about something else was if I absolutely had to such as at work or if someone spoke to me and then I would struggle to focus on that. Of course this could not continue for ever and I knew that but did not want to face it. I ignored it until I had two panic attacks. One was when I went to bed one night. My energy levels were so low I only just made it up the stairs. I staggered into bed and felt this almighty rush of fear. It is hard to put it into words. It was absolute terror as though something worse than death was about to happen. I actually considered for a moment jumping out of the window. Partly to make an attempt to flee and partly because facing the unknown object of my fear seemed worse than death. The other time was when I was at my parents for the weekend. We went out on the Friday night and I had a couple of glasses of wine and as usual did not eat enough. The next day when we were out I came over very shaky (which I managed to hide) and anxious. I kept it together until we got home at which point my heart was beating way too fast and I felt terrible. I sat there on the chair in the living room pretending to watch TV while my mum read the paper. I thought shall I tell her? Everything? It was on the tip of my tongue. But how could I tell my mum I was starving myself to improve my eczema. I knew deep down it was crazy and I needed help but was so desperate for my skin to be better. If I admitted it I would have to eat and my skin would become bad again. I would lose "control". Also it felt like too much to spring on my parents. I knew they would have helped me but I just couldn't tell anyone this secret. I said I needed a little sleep because we had been up late the night before and I went off to bed. Of course drinking and staying up late would not have helped my anxiety. I was shaking and shivering. Feeling very cold and anxious. I wrapped myself up in a dressing gown and duvet and tried to relax and sleep but just couldn't. After a couple of hours I went down stairs and we had dinner. I slowly started to feel better after that and managed to sleep that night. The next day I was still feeling the panic but it was on a lower level.

The impact of the eczema along with OCD and anxiety had a huge impact on my quality of life and effected everything I did. I had just started trying to eat a bit more but was still cutting out dairy and wheat when I was asked by work to do a first aid course. I was in such a state I should not have been at work let alone on any kind of training course. While such courses are made to be relatively easy I was still going to struggle. I just didn't have the mental energy. I was exhausted and my OCD rituals in my head were relentless. I would repeat phrases, sentences and lists of things which bothered me over and over again. My concentration skills were almost non existent. I was lucky that my job was relatively quiet or I really would have been in trouble. I spent four days on this course and left with a fail. I was ashamed and very depressed. I emailed personnel to tell them when I got back in on the Monday having worried all weekend. They did not respond to my email. Heaven knows what conclusions they drew about me from that! 

I knew I had to get help so I decided to see a dietician who was convinced I would be an easy case and that it would be dairy products or wheat or one of the other usual suspects. Not so. I explained I already tried this. She was stumped as to what was going on. So I accepted my eczema and that I was not going to find the answer. I felt that there was no one who would help me. I was out of ideas. Doctors only have a very basic knowledge of eczema. I have had doctors insist they cannot figure it out for me and that I must do it myself only to have others laugh when I come up with an evidence backed idea of what it might be. I decided I had had enough and slapped on the steroid creams that doctors are so afraid of. They say they and bad for you because they can thin the skin. I think to myself ok let's look at this. You can have sore, itchy, dry, swollen, weeping, cracked, bleeding, painful, taught, sleep depriving, debilitating, embarrassing skin on your hands and I my case the detrimental effect on my mental health or you can apply a steroid cream which will clear up all the above in no time. I would give any doc 24 hours with my skin before they would be begging for the steroids. They don't take quality of life into account. I have been using steroids on my hands ever since. 

I found some answers at the beginning of the year when I discovered that the contraceptive pill was partly to blame. I came off it and the swelling and redness from the inside went which is fantastic. The red glow has gone. 

Three weeks ago I had a skin patch test at Harley Street in London and found I am allergic to Balsam of Peru (Myroxylon Pereirae) which is the sap from a tree called Myroxolon balsamum which grows in El Salvador. This sap is used in many cosmetics, toiletries, detergents foods and drinks and is difficult to avoid. I am also allergic to various other fragrances used in many cosmetics, toiletries and perfumes. I am going through the process of checking out all my products for these allergens and researching alternatives. I'm actually finding it all very interesting and even enjoying learning about all these chemicals. I hope I can now move on from all the frustration this skin disease brings by finally knowing the cause. I often feel that I am able to tolerate and even find peace with something if I have the knowledge to deal with it.