Guardians of Grail

cheapbag214s · Posted: Sun 22:24, 25 Aug 2013 Post subject: A life sentence in two words

A life sentence in two words,[link widoczny dla zalogowanych]
I have MS. I can't, and don't, speak for anybody else who has it. I avoid people who have it, not wanting to see how dire MS can get. This is the universally acknowledged head-in-the-sand coping method.
I am not a bad or dramatic case, but it's obvious to those in the know.
I was diagnosed almost 10 years ago after a decade of suspicion. In 1983 I woke alone in a house with a six-month-old baby, almost blind and rigid down my right side. Terrified, I was sent to see an ophthalmologist. A CT scan followed and eventually optic neuritis was diagnosed. I was warned I had a high chance of going on to develop MS.
A word of warning was given on further pregnancy - it might accelerate MS.
A decade on, after weird health problems, a neurologist diagnosed MS. Second opinion, MS. Third opinion, ditto. The disease has now affected most areas of my life, many parts of my body, and many attitudes.
My feet can feel like they are wrapped in hot vibrating sandpaper,[link widoczny dla zalogowanych], mounted on a trampoline. The moment I step out of bed they start their slow burn. Several years ago I had a major MS episode called an exacerbation and landed in hospital unable to walk,[link widoczny dla zalogowanych], at the same time as my only child sat her VCE exam. Exquisite timing.
It took rehab, steroids and some months to learn to walk again. I don't take it for granted.
My GP, trained in traditional medicine, gives me acupuncture to help keep my feet under control. I have been dependent on him for two years but he says under the Medicare changes I may no longer qualify for the rebate.
My feet need support and cushioning,[link widoczny dla zalogowanych], so no strappy sandals or stilettoes. Sneakers are best. Exit dresses, enter permanent trousers; I used to be pleased with my legs, but vanity goes out the window with MS.
My hands can also be treacherous, locking into claws. At times they have what is politely known as "tremor". They can twitch and shimmy. The keyboard became out of bounds.
This loss of dexterity affects many parts of my life. Hobbies are limited: dancing and tennis are out,[link widoczny dla zalogowanych]; gardening is iffy; dressing is a chore (anyone for a Velcro bra?).
Showering is supervised and done hanging on to a handicap rail,[link widoczny dla zalogowanych]. Applying make-up is dicey,[link widoczny dla zalogowanych]. Preparing meals is precarious.
Often my hands are cut or burnt. Hanging out washing involves a mixture of balance and co-ordination.
I was assured that MS killed few,[link widoczny dla zalogowanych], unless sufferers develop trouble eating. Information I could have done without, as the latest trick in the MS repertoire has affected my swallowing. Throwing a full "choke" at a dinner is not pretty or comfortable for anybody present.
So now dining is only carried out with those who have at least a nodding acquaintance with the heimlich manoeuvre,[link widoczny dla zalogowanych].
The fatigue can be like living with a newborn baby while having the flu. And then there's the MS effect on my bladder, dodgy anyway in women of a certain age who have given birth.
This does not make me a trustworthy bedmate. Fortunately,[link widoczny dla zalogowanych], this is rare. Areas of numbness, sometimes pain, and spasming hands do not exactly enhance my sex appeal.
My eyes,[link widoczny dla zalogowanych], where it all started, are not the best, and coupled with the misbehaviour of my hands ended my 25 years in journalism. Ironic,[link widoczny dla zalogowanych], because the same drawbacks make it nearly impossible to be a competent housewife. My daughter is typing this story for me.
So, apart from my gait, balance, hobbies, eyes,[link widoczny dla zalogowanych], throat, hands,[link widoczny dla zalogowanych], bladder, feet,[link widoczny dla zalogowanych], legs, the effects on social life, working life, financial life and married life (my husband works from home to care for me), MS hasn't really affected me all that much.
My mother-in-law introduced me to a man with MS who used hash brownies to cope. It was the stupidest question I've ever come across.
MS is an opponent not to be underestimated. It constantly throws up new challenges. The neurologist I see says it's to be hoped that medical science progresses faster than my condition, or at least keeps up.
He has a nice line in black humour and is unfazed by the new twists MS throws up. There are pills for most things. There is also weekly treatment by neurological nurses, terrific women who've seen it all.相关的主题文章：

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