Iīm a 20-year-old girl, named Josefine and I live in Sweden. I study
Medical Biology at the University of Linkoping.
I was diagnosed with TM in october 1992 on the age of thirteen. Then my
level was C4-C6, but nowadays I would say it is around Th1.
Beeing 13 years old means a lot of fixation in how you look and what you do
and so on (at least here in Sweden). That among other things made me train
a lot. I swam 4-5 times a week and ran every morning before school. During
the autumn of 1992 I caught a cold which developed into a mycoplasma
infection. Nevertheless I kept running and swimming. One night after my
regular swim-training I went to bed around 11 pm, a bit more tired then
usally - maybe... A few hours later, around 1 am, I woke up and tried to
get to the bathroom, but I just dropped down on the floor, unabel to move
my legs at all. Of cause I got scared and screamed for my parents. My
mother, who is a doctor, told me that I was probably only a bit tired, but
after a while she phoned the hospital for advice. While she spoke I could
feel the paralysing travels upwards, to my arms and to my fingers. An
ambulance came and I got into our hospital, which unfortunatly it is a
small one with no resources at all, so I was sent in a ambulance to a
bigger hospital 250 km away. My breathing became worse so I almost ended up
in a ventilator, but fortunately I didnīt need that.
They had great difficulties deciding what was wrong. They talked about MS,
but the MRI said no, after a while they decided that it was
Guillian-Barre-syndrome. But later on they changed their minds again and
told me that it was myelitis. (Since that was easier to pronounce, I was
satisfied....)
There was some more transport between hospitals and after a while I got to
a childrenīs unit where they did know exactly nothing about myelitis...so
rehabilitation took a while. Finally I got my physical training....
So, Iīm still using a wheelchair, but I manage quite well on my own. I live
on my own and I have no help, (except for changing the curtains and the
bulbs in the ceiling-lamps).
Through all these years I have had constant pain in my lower back and in my
shoulders. Sometimes worse, and sometimes not that bad. Anyway, nothing
helps then, not laying down nor sitting, not even drugs helps. Now Iīve
been trying stronger drugs, but I just feel dizzy and the pain is still
there so I guess I just have to ignore the pain. Iīve noticed that the pain
has become a bit more severe since I moved from my parents to my own
appartment, I suppose thatīs because I have to do all sort of cleaning and
so, on my own. And I donīt want to have any help, I want to manage on my
own....
I better stop now. I really enjoy this list, Iīve learn so much, and hope
you will continue to write....
God bless you all!
Love
//Josefine