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Matt's story

I'm Matt a 28 year old male, I was diagnosed with lupus 18 month ago.

I suddenly became very ill, I knew there was something wrong with me when I kept waking up in lots of pain and coughing up blood. I kept calling my mum at work because I was so worried that I couldn't breathe. My mum told me to get a paper bag and take big breaths slowly in and out, but it didn't work.

She then made me an appointment to see the doctor. I told him that I had a sore throat and lots of phlegm in my mouth, my legs, hands and face were swelling up, I was coughing up blood and I also had ulcers on my tongue. He said I had a virus and gave me antibiotics.

Before I got to the end of the course of tablets I got a phone call to go back to the surgery. The doctor told me that the antibiotics would not work and gave me gel for the mouth ulcers. I had a bad rash on my face but the doctor didn't give me anything for it.

I saw another doctor that told me that I was anaemic; I was sent for a blood test. The doctor rang on Friday and said something was wrong with my blood so I had to have another blood test the following week. He then rang my mum at work and told her that if she was worried at all over the weekend she was to take me straight to hospital. She took me on Saturday afternoon and they admitted me straight away.

Over the next three weeks I saw lots of doctors, had loads more blood tests and also 3 blood transfusions. I had to endure a camera down my throat and had nerve testing - I think its called nerve conduction velocity that sent a shock into my legs and arms. I also had some kind of acupuncture where they put needles in different areas and connect them to a machine.

I was in my local hospital for about 3 weeks, during which they kept moving me to different wards. It was making me very nervous and scared about what was going on because no one seemed to know what was wrong with me. I didn't like the food and that was making me feel very down, they then said that they had done all they could do. I was told that they were going to get ambulance and send me to St. Thomas' Hospital because I had lupus and they were the best hospital to treat me.

I spent 2 weeks in St. Thomas' and had more tests. I felt a lot more settled as someone knew what was going on - even the food was very nice! I was a lot happier the doctors and nurses were great - it was first class - I even had my own television with Sky on it. There was a good view of London from the hospital and a room where the patients could sit. I met a lot of different people, had lots of doctors and trainee doctors around my bed pulling me about and doing tests on me.

About 3 days later they told me I needed to have a 2 kidney biopsy that was so painful I was all most crying, I wasn't allowed to get up for about 3 hours. They gave me lots of morphine to take the pain away as well as strong pain killers; I have never slept so much - it was great, lots of rest! My blood pressure was low so they tipped the bed up, I don't know why.

I got very restless; I missed my own bed, my cats and family, I had to find ways of keeping myself happy. One good thing is I do not smoke or drink! I find it very hard to deal with not being able to go and see my son in Scotland due to my lupus.
I got my results and was told I had a damaged kidney; I now have to go and have chemotherapy every 2 weeks.

The way that I feel

All my joints swell up and are very painful; I can't get in or out of the bath and find it very hard to climb the stars without stopping. It's hard to dress myself sometimes as well as not being able to do everyday things in life, I'm always in pain.

I don't feel like a 28 year old, I get very fed up sometimes and find it hard to deal with having lupus. It's not nice not being able to get comfortable. I get very frustrated, angry and concerned about my future, I have lots a lot of friends that have dumped me, making me feel even more upset. I get very lonely because of my illness and can get very lazy. I didn't like to go out on my own as some people stared at me because of my hair loss, so my mum shaved it all off and now they don't stare at me.

I am finding it hard to find a way of getting a full nights sleep without getting up again because I feel I am not going to wake up, I go to bed about 5 in the morning. I get very down and tearful when the pain gets too bad. I also have a disintegrating disc in my back so this causes me problems. I also find it hard to get people to understand me as I have slight learning problems, I don't think I'm clear when I speak to people. All in all my confidence has taken a battering.

My future goals are to get healthier, get back to full time work and to pass my driving test. I want to see something of the world and I would also like a nice girlfriend.