My name is Emma, and im a horizontal! Not by choice of course.... let me explain.

Back in 2014 i suffered a nasty virus, that was worsened by severe immune suppression from contracting Lyme Disease several years before In america. The damage from the virus unfortunately devistated my Autonomic Nervous System (ANS) and also left me with a life threatning condition called Addisons Disease.

I was diagnosed with Pandysautonomia, and for 6 years I’ve been bed bound with very little ability to leave my home. Your ANS controls your breathing, heart rate, blood pressure, temperature control etc... all the ‘autonomic’ functions. Sadly, when I sit up or try to stand, my ANS misfires and these functions just don’t respond accordingly.

For the first few years, I was able to manage a tilted wheelchair for moments of escape, but a worsening of my condition has meant this is now impossible, and the only time I ever leave my bed is to be taken to hospital via a stretcher... which got me thinking 🤔 why not just purchase a stretcher!

I miss the trees and outdoors so much. My door is literally 50ft away from a beautiful leafy park, that spans 2 miles in radius, and my dream is to be able to not miss another summer.

I’m also in a very difficult predicament. I have been waiting for inpatient rehab and physio for almost 3 years now, and my admission to the specialist unit should have been summer last year. Sadly, due to Covid-19, this has been postponed. I’m now told it will be another 16-18months, and sadly, due to multiple hospital admissions, I’ve deteriorated quite significantly. If I wait another 16months, rehab may not be achievable. Community physios have declined 3 referrals, despite consultants and GP’s stressing how vital this is both physically and neurologically. Because I am on the waiting list for specialist unit, and my conditions are not straightforward, they continue to be declined.

My Specialist, Proffessor Lobo at Barts, has alternitive private option, to ensure i stand the best chance of recovery, but theres several hundred miles between me and that help! I require 24hr care, so relocating is no easy task! but its my last hope now...

Funds raised will go towards ambulance transport, accomodation, clinic costs, and live-in care while im in London.

some of the funds raised will also got towards a stretcher to help get me outside.

Thank you so much for your support and help.

please follow my story on Twitter @JustMissEmma

#DiaryOfAHorizontalGirl