Well that’s total Croc!!!!! Pain is certainly not gaining me anything. Since Sunday I have been unable to use my right arm properly. It feels like a dead weight next to my body and when I move it I get shooting needle pain from top to bottom. It makes me feel physically sick and makes me want to cry when I try and lift it & self propel.
I had physio this morning and I’ve been told that despite my pain there is nothing more that can be done for me. I’ve reached my limit for my recovery and that I’m being referred back to my Rehabilitation Consultant to see if anything she can do to help with the pain and lack of movement. I’m so fed up of being unable to do anything or achieve what I want to and what is expected of me.
Until Sunday I could walk a few metres with my zimmer frame but now just moving my arm is so so painful & makes putting my weight through it to walk utterly unbearable. I hate how this illness can take so much away from me and how I can do so little for myself. I may sound self-pitying, yes I am but I’ve had enough!!
My stupid body is causing me to not make progress. I know people will say that I just have to make the best of a bad situation but I can’t accept that. I want to make progress. I want to be able to walk from the lounge to the kitchen and the wet room using my frame.
What’s making it hard to do things is the lack of support outside of my family. I have a few friends who I’d be lost without but I’ve had no support from any organisation etc. I’ve never felt more alone than I do right now.
When I fell ill I was given little support emotionally by anyone involved in my care. Nobody told me I had a spinal cord injury until a friend spoke to a person from the Spinal Injuries Association. They were seeing her as she has Cauda Equina Syndrome and was talking to her about the Spinal cord injuries they support. On hearing they support TM she pointed him out to me and a week later he came and saw me and gave me some valuable information that is given out to SCI patients. I was referred to their Healthcare side who now provide all of my catheter care products that are delivered each month.
Since leaving the ward I’ve not had any contact from any organisation and it’s because of this I feel so stranded.
I don’t just want support for myself but for my family too. Paul will never admit he finds it all difficult. He is a typical stubborn male but I see it in his eyes.
As a family we have always been strong, having Lewis has given us new strengths and abilities in dealing with all manner of things. I guess that’s how we’ve got as far as we have in this situation.
Oh well onwards we go. We’ll fight on as that’s what we do.
Transverse Myelitis & Me, With A New Addition! 