My biggest hurdle, was coming to terms with my loss of controls. Many things had become out of my reach, I could not now do
the many things which I used to love to do. I had to turn down invitations, as places became inaccessable to me . I found
it too uncomfortable to sit in such places as cinemas, restaurants etc. I couldn't walk around shops, or go for country walks,
visit the library, in short, I could only go to places where I knew I could park immediately outside, and I knew I could sit
comfortably as soon as I entered. This limited my options tremendously, and I became almost reclusive. I had to depend on
others for even the minor things, I couldn't prepare meals, nor even make myself a pot of tea. It was very painful to hold
a book to read, so I stopped reading. My life became limited to sitting in either an armchair, then later to sitting at my
desk, using my computer, typing with one hand, and using the other hand to support myself. I felt everything had been taken
away, that I had to depend on others for anything I wished to do. My self-esteem dropped to an all time low, I had previously
been considered a 'coper', this was definitely not the case any more, I became depressed, felt that I was helpless and hopeless.
I learned to lean on my computer more and more, I taught myself many of it's attributes, made e-mail friends all around the
world, these became my lifeline almost. I was spending so much time on my computer, that my husband began to feel I was growing
away from him, it seemed that there was not a lot we could achieve together. We had many talks about this, and I needed to
reassure him that it was only my condition which was causing the rift. I had begun to think that my ill health was controlling
my very being, I needed to do something to change all of this. I had to accept my limitations, not resign myself to them,
if I was to move on.
Counselling was a great help, I needed to take back some of my controls. I needed to learn to ask
for, and accept help, to learn that my needs would not always be met immediately I asked for them. I hated to have to ask
for help, yet I needed it, so had to rethink my strategies.
My husband and I discussed all this at great length, we decided
that in order for me to begin to regain control, I needed, for a while, to control the minor things which I could control,
and he would work around me. I decided for instance, what hours I would sleep, sleep always being a problem for me, I am a
night person, being used to sleeping from around 4am, as I used to work a night shift, and was unable to change that pattern.
So, I stayed up until I felt ready to sleep, and got up when I felt I'd had enough sleep. I spent as much time on my computer
as I wished. I made shopping lists, and prepared menus, made lists of things I would like to be done in the house etc. All
in an effort to become more a part of my life, and have some control over it.
I took some control in my health treatments.
I searched for help with aids, found out where I could obtain a loan wheelchair, until I was able to obtain one permanantly.
Now, I could go places with my husband, places which had been unaccessable before. I lobbyed my MP for a wheelchair. Then
decided to use my disability, instead of being a victim to it. I decided to write this web site, in the hope that others may
benefit from it, or at least learn to understand how disability can affect a person.
I am by no means in complete control
over my situation, but am getting there, and feeling much more in control. In time I hope to be able to be in complete control.