I’ve now reached seven months in my recovery from Transverse Myelitis, the cruel condition that took away my ability to walk in just a few hours.
On January 1st this year I woke up with pins and needles and by the end of the day I could not feel either my arms or my legs. After two weeks in hospital I’d made enough recovery to come home, but only once my home was filled with aids that would help me. I was certain that I wouldn’t be using those aids for long, I looked out of my window and my car and was impatient to be out there driving around again. That wasn’t to be.
My car was taken away in February. I’m the only driver in the house so now we have to rely on public transport again. My other half is learning how to drive so we are hoping that he’ll pass his test before the end of the year. We’ve been without a car before and actually became used to it, but it’s so hard now. Particularly as I find it difficult to use public transport in my wheelchair. Planning even a simple trip can prove to be a complete nightmare. As a result, I don’t go out much.
I work hard at getting better, I have physio at the hospital and I work at home to try and improve my movement and I think I’m doing really well.
I can now walk unaided for short distances.
I can bend a little more.
I can walk up the stairs without dragging my feet.
I can shower alone.
There are also things I can’t do.
I can’t walk outside my home.
I can’t walk for more than 6 metres without having to take a break.
I can’t bend down to get things from the cupboards, I also can’t stretch.
I can’t walk up the stairs using my left foot first and I still have to step up with both feet on each step.
When I get really tired doing anything becomes a struggle and I get tired quickly.
The pain never stops.
I wish the pain would stop. I can get one with things mostly, so long as I don’t do too much I can ignore the pain. Sometimes I can’t ignore the pain, like when I get into bed, when I get up in the morning, when I’ve been standing too long, when I’ve been sitting too long. When I’m in my wheelchair too long. When I try to do anything that takes the remotest bit of effort to do. When I do nothing at all.
Lately though I’ve been suffering with something worse than pain.
Lately I realise that my mental health is not so good.
I’m still positive, I’ll never give up trying to get well again but sometimes I just don’t want to have to do it any more.
Fighting is what keeps me going, but it’s when I realise that my medication is creating a fuzziness in my head, making me forgetful, lost, unable to find my way. I can’t cope. I can’t cope with not being in control, of my body, my brain and my life.
And I just get so fed up of not being ‘right.’
It seems like I’m stuck like this, as each day, week, month goes by I get less and less sure that I will or can recover. The odds are stacked against me making a full recovery.
This condition is so rare there are no clear answers.
Even if I did recover it’s possible that something simple like a cold or fever can put me straight back to where I was when it all began.
How can I hope, how can I fight, how can I be positive when I know that it could go back to beginning in an instance, at any time?
So, this month I’m under a dark cloud. It may be sunny outside but I’m mostly stuck indoors, in pain, unable to do even the simple things I used to do.
This was not the plan, this was totally unexpected, this has blighted my life and my loved ones lives.
Transverse Myelitis sucks big time!
