I
feel pretty good about myself. This is despite the devastation that 20 years of
primary progressive MS has wroughd on my poor, beasieged body. Despite this, my
self esteem is intact, and in good health.
For the last 7 years I have lived in a nursing home, where I have had a
wonderful quality of life. I am looked after by kind, friendly and
conscientious people. If I need to go somewhere, transport is provided free of
charge. I can order guest meals for visitors at no extra charge. I am very
important fortunate to have a self contained flat, one of only 2 in the
building. I have a large bed/sitting room, plus a spare guest bedroom for my
children to come and stay. It has 3 windows, so is flooded with natural light.
I have been able to decorate as I choose.
This is all in stark contrast to my previous life at home. Unfortunately,
although I was with my beloved children, my ex-husband made life hellish
as he could. His rage at my MS meant that I had no space to think about how I
felt about being ill. I was too busy fielding his rage at me. He confused me
with my MS: they are not the same thing at all.
He never abused me physically, however the emotional and mental abuse I
suffered, was terrible. He would frequently turn out the light, and leave me
sitting on a toilet in the dark. I never knew when, or if, he would return. The
daytime he spent brooding in his bedroom upstairs, and I never saw him
until the evening, when he would appear and watch TV with the family. I drank
vats of red wine, to numb the discomfort at his presence. He frequently told
the children in front of me, that I was clinically insane, and should be
ignored. Luckily, they ignored him. My response was never to shout (I didn’t
want the children to see endless shouting): instead, I would simply take the
piss out of him, and ridicule him wildly.
At night, I slept downstairs in the lounge whilst he disappeared upstairs to
his bedroom, taking one of the dect handsets for the phone with him. Usually,
he would turn this off, so if I needed help in the night, that was just tough.
Woe betide I should ever be ill. In that case, I was told how disgusting I was,
especially if diarrhoea was involved. He once suggested that I should swallow
my own vomit , in order to make less mess.
One night he got extremely drunk at a local fete. I was seriously concerned
about how he would put me to bed, so I slapped his face gently, in order to try
and sober him up a bit. He whacked me back so hard, I thought my head would
fall off. I immediately phoned the police.
A very lovely woman police officer arrived, and kindly and gently put me to
bed. I felt awful that the children had looked on, with eyes as wide as
sources.
Once I agreed to move into care, he would frequently tell me “you’d better shut
your mouth – I could have you in care in a week, if I wanted”.
After transferring to the nursing home, I was desperately miserable, and cried
myself to sleep every night for three months. Once I had settled down, I
realised it was in fact, the best thing that’s could I have happened to me. I
had successfully gotten away from him.
Sadly, I don’t think my experience is unusual, amongst people diagnosed with
MS. I heard a shocking statistic – that 50% of married people with MS Break up
within 2 weeks of diagnosis. Given that 2 out of every three 3 three people
with MS are women, this means that it is women who are being dumped. Men
simply cannot cope. If the support for people who are newly diagnosed was
better,perhaps things would improve.
I look back on that bleak period with some sadness. At least I was with my
beloved children, who were still at primary school. What I cannot forgive him
for, is taking away ruining 4 years of their childhood, when family life could
have been so much better.
At least we are making up for lost time now. They both seem to have turned out
brilliantly, as kind, funny and intelligent human beings
January 2020
