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| Jaqueline |
I remember going to work one day, March 19th 1991, feeling as though I was coming down with flu. It was Maundy Thursday, the day before
Good Friday, and I had to work, employed by the Education department of the city council. That week we had an Easter Playscheme with 120
young people booked in for holiday activities. There was a Disco dance to organise, food, competitions, DJ, art and craft activities and
wages to pay.
Part way through the morning my Deputy Leader came to me saying " Jackie are you alright? You look as though you are dying, what's the matter?" I remember
holding my forehead with my hand and saying " I don't know but I feel so ill I have to go home". I do remember phoning my friend before
I left and leaving a message on his answer machine saying I think I'm coming down with flu and I'm going home.
I do not remember driving the five miles home or how I got there or what happened to me for the following week. The next few paragraphs are what my sons
and friends have told me. My friend decided to call and check on me. He found my front door wide open and no answer when he rang the bell
or called out my name. Eventually he ventured upstairs and found me slumped across the bed, fully clothed, still with my coat on and I
had vomited everywhere. He told me: He changed my bedding and my clothes, washed me and put me to bed, went downstairs to put the soiled
bedding and clothes in the washing machine and when he came back up with a drink. He says he could not rouse me and I was delirious and
eventually found the number for my doctor.
During this time, my friend had been on the way to an important meeting and was by now nearly two hours late, so he went to a neighbour and explained what
had happened and asked her to sit with me until the doctor arrived, which she did. The time was now 5.30pm and my son (13 at the time) had arrived
home from school while the doctor was there. The doctor told him: I don't think it's Meningitis but if your mum is no better by 10pm call me back.
My neighbour left and Joss waited for his brother to come home from the school match.
At 7.00pm the doctor came back of his own volition saying: I am very worried about your mum, she is a very sick lady. Do you have any relatives live nearby?
My son told him my cousin lived a few doors away. The Doctor said "Run fast and get her and tell her to bring her car." My cousin arrived
and the doctor said: Jaqueline is a very, very sick lady. Take her to Monsall Hospital (an isolation hospital) they are waiting for her.
I remember very little of being in that hospital for a week, but I do remember people shouting at me very loudly and sticking pins in my arms and legs and
feet and face and ears and nose and anywhere else a pin could be stuck! I recall one day two nurses giving me a bed bath and lifting me
out of bed onto a chair and asking" why can't I walk?" I recall I couldn't walk or sit up and a nurse telling me I had Meningio- Encephalitis!
I was sent home after a week and told I could return to work when I felt well enough.
The next week is a blur of me not being able to get out of bed, not being able to make my
legs and arms work and not being able to speak properly. When I did eventually manage to
get up, I was walking into walls, staggering about the house or falling down.
After about 19 days I went back to the doctor to get 'signed off the sick' as a single parent I needed to get back to work and earn some money! The Doctor
asked me some questions, made a phone call and gave me a letter and sent me back to a different hospital where I saw a Neurologist. All
I remember about that is him saying: I need to go get my boss and then a Professor (as I later found out) coming in, doing all kinds of
tests and questions and then saying: "She needs to be upstairs in bed.
I was taken up to a ward and put in a side room where a barrage of tests were done over the next 2 weeks and then I woke up one afternoon after sleeping
most of the day. My speech was perfect, I could walk properly and see properly, as though all this stuff had never happened to me. I had
to argue to get home to my sons who had been looking after themselves all this time. Their father was of no use to them at all through
this. This scenario went on from March 19th until July of the same year. Me getting ill and sent back to hospital, them doing every test
under the sun, me getting 'better and sent home and two days after starting up all over again (9 times from March to July.) I was off
work for a year that first time.
In 1995 I was re-diagnosed as having Encephalopathy, during one of my stays in hospital
and seeing a different consultant. When I asked what that was, I was told:
Long Term Chronic Encephalitis: My reply? Oh well, that makes me feel much better.
Now you've given it a different name, it will be much easier to live with.
In 1997 I had another attack and finally took my doctor's advice and took early retirement at the age of 52 yr. But here I am as well as can be expected
and still fighting and getting on with it. I have good days and bad days but I have learned how to take care of myself and if that means
I need to spend 3 days in bed watching TV or sleeping so that I can function for the other four days of the week. Well then that's what
I do.
Life is still a ball, very different to how I ever imagined it would be but I find I can still have fun, find beauty in the smallest and most unexpected
way and most important of all I can still laugh... even on the days when I can't talk properly. When I feel well, I celebrate by getting
showered, washing my hair, putting on my make up and going out alone. If I'm lucky I remember to clean my teeth at the same time. I have
learned to live with my memory problems, my speech problems, my walking problems, my lack of energy and my need to sleep and all the other
'stuff '.
Update June 2007: My second son Daniel called and invited me to go and stay over with him, his wife and my beautiful
granddaughter. We were in his car and as I sat in the back I noticed a big cardboard box on the floor with a label saying Encephalitis
Society. I asked him what it was and he reminded me that last year he had planned to go to Vietnam and cycle from Vietnam to Cambodia
in an attempt to raise money for the Encephalitis society and awareness of the disease. But my granddaughter decided she was going to
arrive sooner than they had imagined and so the trip had to be postponed until next year some time.
Now to the point: I wanted to share this with you, there is a very, very poignant line in the passage, which breaks my heart.
"The woman who went to work that day never returned and the woman I grew knowing as my mother is a different person." I discovered this 16 years after I was taken ill.
Best wishes,
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Jaqueline
Manchester, England
Posted: August 24, 1999 |
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