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Thursday, May 10, 2012

Due to talk at the Transverse Myelitis Association Thursday 17th May

I have been asked to reflect on my recovery from Acute Transverse Myelitis at the Transverse Myelitis Association meeting next week, and it is troubling me. Me, who can talk under water and never gets nerves. We have discussed reading bits from chapters from my book. But which chapters do you choose? Should I choose those that might resonate with other sufferers - the struggles to come to terms with being handicapped, the awfulness of being a cypher in the system? Or should I choose those that are about my recovery. I suspect there will be people there who may not have had the supports I have had, have not been able to access Acupuncture, or were just more serious at the beginning. I don't want to offend. Mmmm, what a lot of dilemmas.

1 comment:

  1. Strange as it might seem, I had a mild case of transverse myelitis in about 1990. I woke up one night in a terrible panic because I thought my legs had fallen off! I located them and picked each one up and shook it. Gradually sensation returned [mostly] to my right leg and with only a loss of sensation down the outside of my left thigh/leg. I put it down to an effect of new antidepressants or my occasional sciatica, though it really frightened me. When I got up in the morning I had to help my left leg a bit and kept "steering" left because my leg wasn't stepping forward as much as I thought it was. When I mentioned it to a certain DB-T as we walked somewhere, he laughed, and said "What a hoot! The body image research officer has a body image problem!" After that, I just coped- amidst a few slight bladder/bowel control slips. I thought they were a result of other medication & said nothing to anyone, even my GP & shrink. After a few weeks, control of my leg started to improve but I still had a pretty logical area of semi-numbness down the outside of my left leg. Just chatting one day with a friend who had had to use a walking stick due to nerve damage to one leg while pregnant, the conversation was overheard by our Noble Leader. He flew into a bit of a panic, grabbed me and closeted me in his office, demanding the whole story. He thought it was something neurological and asked me if I had experienced any high fevers in the last year. He must be a pretty canny diagnostician as I HAD experienced several days of high temperature, inability to stand any noise, a stiff neck and needed to sleep a lot. I had asked our home cleaning person to go home & not clean one day when I was lying down flat trying to get relief from the awful headache, so the day stood out as unusual. Ross scooted me off to see the neurologist downstairs & he concluded I had suffered a small attack of Transverse Myelitis, probably viral. I was fully back to normal sense in my leg after about 4 months more & nothing has ever occurred again! Hooray! Yours sounded a real shocker! I never said anything initially as all the unusual symptoms I've ever had have been dismissed as imagination or hypochondria, although most turned out to be real problems. I didn't trust anyone enough to "confess" my "silly" experiences. How's that for your talk?