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Helen's Story

I am a 35 year old woman, married with a 12 year old son. I was a dental nurse until things went horribly wrong, not just for me but for my family too.

It all started in January 2000. I had a pain in my left foot, at the time I just thought it was from wearing high heels at the Christmas work party! The pain got worse and then, when I woke up one morning, I noticed that the middle finger on my left hand was white. I felt generally unwell and then noticed that another finger was also white.

I went to my doctor who said that I should undergo blood tests, upon seeing the results he referred me to a rheumatologist. By now my fingers were very white as if someone had put elastic bands round them, also all my joints were very painful. One day my fingers turned from white to purple so I got an emergency appointment to see my doctor. Whilst in the waiting room the pain in my fingers was unbearable, I was almost crying. I took off my gloves, held out my hands and said to the doctor "please help me". The doctor was shocked as my ten fingers were now nearly black; he said it looked like connective tissue disorder. This meant nothing to me but sounded scary. I was given medication for blood, which would open the blood vessels, and now had to await the results of the blood tests.

By the time I walked home the pain was unbelievable, it felt like my hands were in a vice, on fire and having pins inserted under the nails! It was without doubt the worse pain I have experienced, even worse than childbirth with no pain relief! This continued for eight hours. My husband called the hospital but they said that I would have to wait to see the rheumatologist. I was literally rolling on the floor sweating with pain.

I finally got an appointment to see a rheumatologist, by now I was so cold it felt as if my circulation had stopped, I was also very scared. I was admitted to hospital and given infusions, it seemed as if no one really new what was wrong. Finally, after many questions, scans and tests the word lupus was mentioned.

Now I know more about lupus I look back on my health history and realise that I never really felt well for a long time. I was always tired, 5 years before had a shingle in my left ear which caused Bells Palsy. I was always cold and used to get IBS, ulcers up my nose and skin rashes. When I went out into the sun, I would feel cold and unwell and always had joint pain in my wrists. The doctor said that I had probably had lupus for at least ten years before diagnosis.

I finally lost the tip of my little finger to gangrene. I also lost weight and my job as a dental nurse. I was now this different person, a person that would appear fine on the outside but inside was very ill with aching joints, dry eyes and mouth (Sjogren's syndrome) and Raynaud's.

I was a very lively person before this started. It has been a very long road and for a while I had to rely totally on my family; my husband bathed me, washed my hair, cut up my food and fed me. I felt as helpless as a baby. I struggle to get through the days, I often feel as though I have flu coming on and can't even dance anymore. I take a lot of medication and wonder what it's like to feel normal; never tired, no pain and a fully alert mind.

Angry is a key word for this illness, it's also a very lonely illness. Unless you look ill people assume you are fine. I feel sad that people don't know of Lupus, an illness that can cause so many problems both mentally and physically.