Posted in Archive, December 2020

Disability Representation

Representative. That word means so many things these days. We are always on the look out for something or someone that represent us in someway that we identify with. It’s been a long time since I stopped feeling that word was applicable to me anymore simply because as much as the world has made so much progress accepting disabled people there’s some pretty ridiculous hold ups too.

In politics there’s lots of loud, worringly not always up to date privalged folk making decisions that impact the likes of you and me. I always dread when they discuss the NHS or disability benefits and wonder how much time they’ve spent speaking and really listening to its core users. I’ve written many times and often been disgusted by the response back which has so inadequate they’ve not even referred to my letter remotely accurately.

In fashion I struggle to find clothes that don’t physically injure me when putting them on. I’d love to see more disabled friendly clothes hitting the stores at reasonable prices. For those of you thinking just avoid the clothes that cause injury I do for the most part, but I haven’t found a bra yet that I can take on and off without dislocating.

Councils; I am honestly curious when you design pavements, who decides on drop curb placements? As a wheelchair user, with brain fog more days than not, I have to try to remember the best wheelchair friendly routes. These often involve laughable detours. I’ve been debating starting a ‘The disappearing Dropcurb album’.

Film/TV. All I’m going to say on the subject is start hiring the talented disabled actors that are out there for roles, rather than able bodied household names. You have no excuse, make the adaptations needed to facilitate.

Finally I don’t expect to see representation of myself everywhere, that’s not exactly what I’m getting at. After all one of the beautiful things about human life is our differences, our uniques, our quirks. However that doesn’t mean that we shouldn’t address the issues I’ve raised above and as we’re heading into 2021 these really should be non issues by now.

Posted in Archive, Novemeber 2020

Who to Turn To?

After a week long stay I was finally discharged from one of our local hospitals yesterday evening. I was admitted due to pain in my left eye which has optic neuritis, it had become overwhelming, to the point I felt I had to apply pressure on my eye to relieve it. I had also lost the sensation in the bottom half of my right leg.

During my time in the hospital they decided to carry out a Lumbar Puncture and MRI knowing that my neuro team wanted to do these anyway. The LP side effects I’m still dealing with, I am still having issues with my bladder, my whole leg now has no sensation, and I have a permanent horrondous headache. Both tests came back clear which left the dr’s there confused. On discharge I was diagnosed with Complex neurological disorders and global sensory loss in the right leg, and told my neuro team would take over figuring out the cause.

Today I had an Opthalmology appointment at another hospital. The opthamologist in charge of my care is wonderful. I sat down, he faced me and said “So you have MS ” he was quiet matter of fact about it. I corrected him and pointed out that my tests had come back clear. He muttered that they were wrong and went on to examine my eyes. After several tests he sat back looked me in the eyes and again said “Rebecca you have M.S”. He was quite insisted that my doctor’s must have missed something on my scans due to the state my eyes were in.

So where do I go from here? Such wildly different view points, everyone agreeing that my local neurology team needs to see me again and review what the different teams have found. However getting hold of them is darn impossible. Both myself and my gp surgery contacted them a few days before I was admitted informing them I was going downhill, and needed input desperately. Neither myself or my gp’s surgery has had a response yet.

Right now I’m very emotional and very stressed. I’m taking things moment by moment and trying to just accept things as they are and get on with it. But I work best with action plans and right now I don’t even know who’s responsible for my care. I feel very lost in the system.