When I was newly diagnosed and wondering how I was going to continue teaching with the problems I was having with fatigue and pain, I heard of a lady who lived in my village who also had Lupus. I arranged the first visit by phone and was surprised when she explained that she had an automatic locking system on the front door. I was to ring the bell and speak through the grille and then she would release the door lock. She also warned me that she would be in bed even though it was only seven o’clock. I wasn’t prepared for what I saw. A shrivelled little lady propped up in bed surrounded by bottles of pills, a radio, cassette player and a telephone on a bedside table. This is the lady who was going to inspire me to work hard to raise awareness of Lupus. Here is her story:
“I was always unwell as a child. I was frequently told to pull myself together, but I put a front on and tried to cope. The only place I felt happy was curled up on a step in a sunny corner of the farmyard. (I didn’t know until a long time later, that sitting in the sun was the worst thing I could have done.)
As it happened, I was suffering from Discoid Lupus, and the only person who would listen and believe in me was a chemist in Church Street, Blackpool. That was sixty years ago. Another chemist suggested a vitamin deficiency, and a doctor recognised there was something wrong with my blood, but couldn't diagnose what it was.
Lupus wasn't actually diagnosed until forty eight years later, by which time my body was worn out with pain. I do not want anyone else to suffer like I have done and that is why I want to help the Lupus Support Group to reach out and spread awareness of the many sides of Lupus. I am often told that my positive attitude to life offers comfort to others.
I have had two hip replacements and I need a third, as well as a shoulder replacement. My body is too weak to undergo the operations and so I have to wear a hip brace and a neck collar day and night. A carer comes in every morning and night. Once I am in bed I cannot move. I am grateful to receive Talking Books from the Blind Society and I also have relaxation and meditation on tape that I can play to myself during the night. I used to watch the television in the night, but I don't like the programmes any more.”
Freda became a dear friend and I watched her bravely enduring the discomfort and pain brought about by the savage attack on her body. She was a classic example of a body broken down by undiagnosed lupus, and that is why I work so much to spread awareness of the ravages of Lupus.