| I have multiple
sclerosis Multiple sclerosis does not have me |
| I had been numb in places I
didn't know I had. On my rare visits to the doctor I was told that I was
allergic to: -paint, varnish, fibreglass, etc. One doctor, Mrs Susan Kendall,
even told me that I was a neurotic nuisance and not to bother her again. So, I
didn't. I just assumed that my aches, pains and lack of energy were due to me
being lazy. |
| July 1969 was the first
occasion that my eyes were affected. I had very blurred vision in my left eye;
trotted off to said Mrs Kendall who 'advised' me to wait another month to see
if it cleared up. It didn't! (This was about five years before the final Mrs.
Kendal debacle.) Back I went then duly applied for an appointment to see the
eye specialist. November 1969 I saw him. Diagnosed with inflammation of the
optic nerve. Prescribed steroids month after month; I took them for one year
then I got myself off of them. My vision didn't fully recover. |
| 1971 - same
again. This time I saw a junior doctor who wanted me to have a scan. Mr Rumble,
the specialist, vetoed this and I was put on another course of steroids. My
vision did not improve at all. I spent the next 17 years using just my right
eye. Because I couldn't focus correctly (though I did not realise this) I
constantly did very stupid things such as; pouring boiling water over my hand,
putting cups onto tables that weren't quite where I thought they were and
driving over almost every left hand kerb that I drove round. An optician told
me that the nerves in my eye could never improve, so I learned to live with
just one in working order. My driving instructor advised me to tell the
examiner that I couldn't see straight - not a good idea. I did not take his
words wisdom to heart. |
| Life continued at a steady
pace until 1987, THEN THE CRUNCH. Iwill skip the day I was diagnosed as I have
already recounted this. I read the relevant books and articles on M.S. Shed
quite a few tears. Then decided I must tell Stephen and Liane, something that I
was dreading. Thus, two weeks after I was diagnosed, I told them in a matter of
fact way. Liane was very upset so I explained what might happen and, most
importantly, what might NEVER happen. One in five have to use a wheelchair the
others lead a normal, if wobbly, life with attacks and remissions. I have
chronic, progressive M S whereby things get worse then better, though never
regaining all of the movement or sensation in the affected part. I have always
likened this to going down into a hole by 10 rungs of the ladder, then climbing
up just eight rungs. |
| I really don't know which
way I should continue my description of MS. MY thoughts on it have changed so
much over the years. The bottom line is I have it there is nothing I can do
about it, so I can only concentrate on coping with it. It has progressed at a
pace that allows me to become accustomed to 'one bit' becoming no good before
another bit is affected. |
| Early on the
hardest thing to accept was becoming a 'taker' instead of a 'giver'. I was so
guilt ridden because I had something wrong with me. I WAS THE HEALTHY MEMBER OF
MY FAMILY. I had delayed telling my Mum as she had enough to cope with. I told
her whilst out shopping - a cowardly thing to do. She didn't tell my Dad for
another two years. They were both devastated. April 1988. I went to a
counsellor to try to sort out my guilt. Nancy Spinks was marvellous. I went to
see her on a weekly basis for a year. She pointed out that every 'giver' needed
a 'taker'. I had always been too busy to realise this. Mind you, I still found
it hard to accept. |
| Six months after I started
counselling with Nancy, I embarked on a yearlong course with the view to
becoming a counsellor. I enjoyed the course but never took it further. It was
whilst I was on this course that my vision deteriorated suddenly. I had had
some pain in my eyes for a week when I awoke one morning with very little
vision. This was frightening but I was learning how to live with difficulties.
I remember writing a letter to a friend with just four words on each foolscap
page. |
| I recall one funny moment
during my 'blind' period - John took me shopping and carefully avoided a big
puddle. Unfortunately I was holding onto his arm and walked straight through
it. My sight was very poor until I started to have treatment by acupuncture.
This was about March 1990. After several visits I clearly remember trying to
cross Ferry Road. I suddenly realised that I could clearly see the traffic. I
was like a kid with a new toy. I could suddenly see birds in the trees and
features on friends' faces. It was wonderful. This proved that every cloud has
a silver lining. If my vision had never deteriorated I would never have felt
the joy that its return gave me. |
| During August of 1989 my
legs began to hurt too much to walk. Being totally ignorant of the bureaucracy
that surrounds the powers that be, we got a form from my doctor, presented it
at the appropriate department in Harold Wood hospital and expected to leave
with a wheelchair. Silly me!! Apparently one had to wait for an appointment to
be measured and assessed, wait until these details had been processed THEN
collect a chair. In my ignorance I stated that I needed one within two days and
left the hospital with it. |
| Two days later we flew to
Texas - wheelchair included. I only used my wheelchair when necessary; we were
able to have a smashing holiday. On returning I was advised to contact social
services to let them know I existed. I didn't think that I needed them but,
once again, fortune was on my side and an occupational therapist came to see
me. Jenny was my first OT; how fortunate I was, she was so helpful. She ordered
a vertical lift so that I could continue use the upstairs of the house. I had
no need of this at the time; Jenny must have been psychic because when it was
installed, 10 months later, I really needed it. |
| Cataloguing
every little change would make very boring reading. I shall stick to
milestones. By 1995 I was very immobile. My left hand stopped working in
January 1990, my right hand worked reasonably OK, though not enough to hold a
pen. My left leg was pretty dolally with my right leg catching it up. |
| In January 1996 I went to
Harold Wood hospital to have a urostomy. I jokingly asked the surgeon if I
could have a colostomy at the same time. I said it wishing that I could but
never expecting him to agree. HE DID. Just for good measure he whipped out my
appendix as well. I doubt that he ever realise just how much he was changing my
life. By the time I had this done I was completely unable to stand. These
operations meant that I could go out without the worry of a loo. This also
meant a great deal to John as he was finding my ever increasing weight a
problem to move about. |
| Once I had my cushion I
began to stay out a bit longer. I used to get a very numb bum and an hour was
quite long enough to sit in my chair. The airwaves cushion allows me to spend a
day out. I realise that I am deteriorating as my right hand is not as dextrous,
pains get worse and I am having some difficulty with speech. However---I really
do believe that my family and friends have a more difficult time coping with me
than I have coping with MS. |
| I don't think of myself as
disabled - I just can't walk. It would be foolish to pretend that I like being
the way I am but life has its compensations. I see the kindness that everyone I
come into contact with has. I have never been patronised, if I have it has
passed me by. |
| I have made so many 'friends' on the
Internet that my days are filled using my computer. I should love to be able to
paint, knit etc. but, instead, I have lots of time to tell my grandaughters how
to attempt crafts, (and they let me) I have the joy that Amy and Polly bring
me. Polly actually plays hide and seek with me. She tells me to shut my eyes
and imagine I am hiding . When she has counted to 20 she has to guess where I
am. There is no way that I can cheat. Faith like that is wonderful. |
| I used to be so busy that I didn't
have room in my life for something new. Now I can find the time. I have
belonged to the Book Chat at the Hullbridge library for about 18 months. There
I have made new friends who enrich my life. |
| To sum up |
| Life could so easily be much worse.
Believe me - it's not all bad. I have read this piece again and it is sadly
lacking in humour. My life is in no way all doom and gloom so here's a couple
of anecdotes. |
| I should like to make claim as the
woman who got whiplash sitting in a wheelchair: John arranged two scaffold
boards to allow me to get into Lesley's house. Unfortunately he forgot to hold
them steady and, as I drove my chair up them they tipped, I felt a crack and
landed up in casualty. Nothing very serious. |
| One day, as John pushed me around the
precinct in Southend, a shot was heard. John stopped along with everyone else,
I turned round to see who was firing and fell sideways. There was no gunman -
just no wheel on my chair. The tyre had exploded. |
| Same chair different location. As I
sat in Church I was getting more and more uncomfortable. Oh no quoth i, my
worst nightmare was happening. I was getting fatter by the minute. John arrived
to collect me and discovered that I wasn't swelling up before his eyes, the
strut holding the slides of the chair apart had broken and the right side was
reaching the left. |
| To finally finish I shall pinch
Decartes famous quote: I think therefore I am. |
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