June

My skin hurts, it is tough: it is not elastic. Movement is very difficult. It is uncomfortable and itchy. When it is hot my skin cannot sweat as normal, so in the summer it is very uncomfortable in the sun. It seems like you are covered in rubber, especially at night in bed. You have to keep moving because your skin gets hot and uncomfortable and itchy, so you cannot sleep peacefully. You have to move to expose your skin to the air. I am sensitive to cold, but I need fresh air. All of the clothes I wear next to my skin have to be cotton, or I am uncomfortable.

This illness started around 1986. Before that my skin was quite normal. I started to have cold hands and feet and I became very sensitive to the cold weather; that is an early sign of Raynaud's Scleroderma. A couple of years later my hands started to turn blue in the cold, some fingers would go red and tingly and others would stay blue. Then the skin on my back started to be very itchy and flaky. I went to the St John's skin disease hospital, and they told me I had Raynaud's Scleroderma. I asked them 'is it going to go away?' and they said 'yes, yes', but I don't think they knew much about it at that time. They just didn't want to hurt my feelings. In time they gave me some medications, but that just thinned my blood. They kept trying to take my blood for tests, but my veins had also turned very small and tight and they couldn't get the blood out. The skin is full of broken veins where the veins have become blocked. The skin is mostly tight now; it is not flexible. I cannot even open my mouth properly. Doctors still don't know how this disease happens, and they don't know how to cure it. They study and do a lot of research into the disease, but they have found nothing so far. The effect is not only on the skin; it is inside also. They say that the collagen in the body over reacts. Individual cells stick together which is why the tissue is not elastic any more, and why the skin is so tight. Before I had Scleroderma I lived very fast; I worked hard, I did everything fast. Now I have completely changed. I am very slow. I get very tired. I keep asking the doctors why this is, and they say it is because my lungs are not working properly. I don't get the same amount of oxygen as normal people. I could never do any exercise because even my joints are gone. There is also an effect on the bone. I am not working now. I tried part time work at first, but I could not use a computer because my finger tips are very painful. I had to stop work altogether.

People keep asking me what I am doing now I am not working, but I have so much to do to keep myself going. I have to be very careful: if I knock my skin it comes open. I have to keep putting cream on it. It is even difficult to eat sometimes because your hands can't move properly. Sometimes you are just tired, and you want to lie down. My friends get very impatient with me, which I can understand because I am slow. When you don't know people you feel that you are different, and you try to hide yourself. About eighteen months ago I had to have all my teeth taken out because the gum has shrunk and it doesn't hold the teeth properly. I couldn't eat; my teeth kept moving and it was very painful to eat. They took out all the teeth in one go, and now I have to wear false teeth. You feel people keep looking at you. You know you have totally changed, and maybe not everybody is looking at you like that, but even one person staring can really upset you. Sometimes when I get some change in my hand and try to put it in my pocket I drop it because I cannot control my hand. When I drop something on the floor it may take me ages to pick it up and I can feel people staring at me, otherwise I have to forget it and leave it there. Another thing that I cannot do the same way as other people do is greet them the way we do in Thai culture with the hands together. People can see that I don't want to do it, and I have to explain to them. I don't want to go through that all the time: what I have and why it happened.

Even when my mum sees me when I go back home to Thailand she says that if she saw me in the street now she wouldn't recognise me as her daughter. I have to accept the way other people see me. A friend invited me to go to her house to eat recently. After the meal I asked to do the washing up, and I had to use her rubber gloves. I washed the plates and then later, after we had had some coffee she said she would wash the dishes by herself, but I went into the kitchen and saw that she wouldn't use those gloves again. Really, I felt quite hurt as I know she would never usually do the washing up without gloves. She is still a friend, but she would never use the toilet at my house. She is nice to me, but would not let her skin come into contact with mine. She knows me, so imagine how afraid people who don't know me are to touch me.

When your body is so ugly you don't want other people to see it. With my husband it is all right. We are still quite close and he knows everything that happens to me. He is not an angel, but he is a kind person, and he will help me and come to see I am all right. But when my friends want to look at my skin I won't let them: I don't want to feel embarrassed. Sometimes people don't understand how uncomfortable you feel when they look at you. Before this illness I was not considered a healthy person, but I was a tough person. I didn't care about my health at all. I worked all the time. This illness has made me go deeper into my religion. Buddha says you have to let things go. Nothing belongs to you, even your own body. I used to say my skin is so good, so beautiful. Before, when I was tanned, everybody used to admire my skin, but now they say it is like wood. So now I understand the Buddha's teaching when he says you must not get attached to anything. Nothing is going to stay forever. I try to do a lot of meditation, which is difficult to keep up, but it helps. Sometimes I think this condition is separate from me, especially in my dreams. If I go to sleep when I am itchy I can dream that I am trying to scratch and dig something out, but it is not from me, it is from another surface. I can wake up bleeding because I have scratched too deep, and I realise that I have been scratching myself, even though it didn't seem like that in the dream. Maybe I don't fully accept my disease, although when I am awake I accept it as part of me.