You have a process which needs to be followed, you have policies that need to be adhered to, you have boxes to tick. I do not fit into boxes, my disabilities don’t mould to your expectations.
I have a rare condition which is a medical emergency. I have Cauda Equina Syndrome. This is a spine cord injury. After years of back pain and struggling to move and being ignored, I knew something was going to happen to me, and it did. One night in November 2016 my back pain was unbearable, I tried to stand and my legs wouldn’t work, they were on fire so I went back to bed thinking it was sciatica again. I cried myself to sleep. The next morning I woke up and there was no feeling in my legs, for a brief moment I felt relief after years of pain and then I realised something was wrong but I didn’t call an ambulance straight away (my mistake) I waited. Not long after I noticed I had no sensation and no muscle movement in my back passage and my pelvic floor. I then knew something was wrong. I called an ambulance, medic’s faces turned white and I was rushed in. I had never had a catheter inserted before but it was an emergency I had it because my bladder was in retention.
I got the results and was rushed to a specialist spine hospital late at night for immediate surgery. I didn’t think I was going to survive and had only a few minutes to call my next of kin to let her know just in case. The surgery was 8 1/2 hours and I had to learn to walk again. I was determined. It took me 6 weeks to get on crutches (unsteady). I was sent home and 3 weeks later it happened again. After 2nd surgery I lost my legs completely and had to be picked up and hoisted for 8 weeks.
This condition can happen repeatedly at any time. It’s an emergency every time. I live in fear.
I’m now barely able to move. I have limited feeling in my legs and I walk with my hips. I lost my bladder, bowels and sexual function including my cervix muscle. I still have my overies but that is another obstacle. No one has told me how to live with this, no one has supported me. I have been house bound for over a year.
I live in fear of this spine cord injury happening again. Its very common for Cauda Equina sufferers to end up in wheelchairs.
I also have seizures diagnosed as Non Epileptic Attack Disorder, at the moment I have 12 a day. I have drop attacks and cause further injury to my back. Making meals are an issue and dangerous for me to use a cooker. I can’t leave the flat without someone with me due to high risk of injury.
Then we move onto DID and PTSD, which makes every waking moment a living hell.
At the moment I’m rock bottom. I need counselling but I’m only entitled to EMDR.
I can’t and don’t fit into your boxes. My case is complex not variable.
I intended to write a lot more but soon realised how pointless it is and how few would care.
You see, people see me write and I know I’m tolerated though I have no idea why.
In life I’m tolerated. I was told many times when I was a kid and growing up with services.
I once had a CPN who hated me, I was suicidal and she returned my call to say to me “you’re going to eventually die by suicide so why don’t you get it over and done with”
The same CPN told me I was being discharged because I was beyond help and a waste of resources.
She was right. About everything.