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| Anne |
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My name is Anne. I became ill with Encephalitis in April 2000 when I was 45. I was a Piano teacher and very fit. I cycled everywhere.
I thought I had flu. I got worse over the next week and developed sinus then lung problems. I still thought it was flu. Then I started to get back pain and neck pain and a creeping sensation in my spine. I could not stand by now and was feeling faint and had very loose uncontrollable bowel movements. I was in bed all this time.
9 days after this all started I got really worse. As I lay in bed I had swishing feelings in my head with terrible pains also in my back too. I got up to go to the bathroom and collapsed and had what was later described as a big seizure. I drifted in and out of consciousness called out to my husband to pray for me as I started to loose all sensations and buzzing feeling drifting. I thought I was going to die.
It was Easter so everywhere was busy. The doctor asked me to get to the surgery, how I made I'll never know. He said I was very ill and my heart was doing
strange things and my blood pressure was very high. He thought it was severe Bronchitis, gave me antibiotics and sent me home. Within days my left
side was not working and my feet and legs felt like hot cotton wool. I could not speak and did not know the difference between day and night. I was
sent in as an emergency only to be told they had no idea what was wrong with me and had I had a stroke perhaps. They did blood tests and told me to
not worry I'd recover from what ever it was.
My doctor saw me the following week and said you've been lucky I think you had Viral Meningitis.
As the weeks and months went on I lay in bed totally dependent on my Husband for everything. I had to have a darkened room with no sounds. I would have terrible shaking fits that would wake me up at night with patterns before my eyes. Then I would get what I can only describe as day dreams as I was awake it was seeing things like dreaming with rushing sounds and explosions.
Meanwhile my husband asked for me to go to a different Hospital. (Months later I was seen by a Neurologist who said it had damaged my Cerebellum and it was a shame I was not sent to him sooner. He arranged for me to have physio at the hospital, which I tried, but I kept on collapsing and my feet went blue with the slightest bit of exercise. They said they had not treated someone like me before. So they did not know what to do.
I tried so hard to be normal trying to walk and going to the shops I just kept on collapsing and sitting on the floor on the road side because I felt so ill and numb from the thighs down and just crying like a baby. Noise was terrible and trying to get my change out to buy something I couldn't co-ordinate.
Eventually Last year Autumn time I was told after having an MRI and talking to a Consultant that I had had diffuse brain infection and that it had scattered through out, there is nothing they can do. It had damaged the nerves and blood vessels in my legs causing the blood to pool. So it does not pump back to my heart properly.
I've been declared 80% disabled by social security. My husband looks after me full time as I can't care for my self as my memory is terrible and when I do walk around the house I can't balance and miss door ways and hit the walls instead. I still can't play the piano properly or use my hands or legs much as it inflames everything and makes me feel very ill. I don't have a social life as I get disorientated with people and noise and it makes everything terrible. I have an electric wheelchair to get out of doors. Also an electric wheelchair indoors but it makes me bad sitting up as I have to lie down or my feet go blue.
It has been hard on my 2 children especially my daughter of 10. I would so love to take her for coffee and go shopping and swimming but I can't so it's hard. I am always exhausted and doing little things make me worse.
I can type with 2 fingers, which now helps me, contact people on the net.
I don't know what the future holds. I take a day at a time and pray that God will give me strength to cope with the situation I'm in and to still continue to be a good mother.
Please e-mail me and talk if you want to.
Love,
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Anne
England
Posted: Feb. 25, 2002 |
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