The seemingly inconsequential bite left her bed-ridden, suffering with Lyme Disease and a host of associated medical conditions, leaving her bed-bound, unable to sit or stand, or access the rehabilitation she needs to aid recovery and help her live a normal life. She now spends every day lying flat on her back longing to enjoy the simple pleasures most people take for granted. Her only trips out of the house during the past six years have been to hospitals.
Emma, 46, who lives close to Sefton Park in South Liverpool has since suffered a series of serious, debilitating medical complications, all of which can be tracked back to the bite. In 2014 she contracted a virus which was intensified by severe immune suppression which devastated her Autonomic Nervous System (ANS) and left her with a life-threatening condition called Addison’s disease. ANS controls a person’s breathing, heartrate, blood pressure and temperature, this complication along with her previous diagnoses had devastating consequences for her already complex medical needs. Emma was eventually diagnosed with Pandysautonomia. It was in 2014 when Emma developed a severe respiratory flu like virus rendering her bed ridden for two weeks unable to sit up or stand up without passing out, due to dangerously low blood pressure and an incredibly high heart rate that the journey for the ANS diagnosis began. Eventually after a three year wait, following a series of tests and consultations Emma’s medical team determined that the virus could be stemmed back to the development of her Lyme Disease, which has devastating consequences on your immune system.
Emma, whose Twitter account @JustMissEmma chronicles the journey so far #DiaryofaHorizontalGirl, said “I was bitten by a Tick at 31 and was bed-bound by 40 and at 46 I am desperate to give myself the best chance possible to live a normal, fulfilling life and not spend the rest of my life staring at a ceiling. I am a really positive person and before this illness was the life and soul of the party. I tried to run my business from my bed for a while, but realized that my main and only focus has to be my rehabilitation and focusing on the best possible recovery.”
Emma has now been waiting for inpatient rehab and physio for almost three years and she should have been admitted to a specialist unit last summer. Unfortunately, due to the pandemic, Emma has now been told this is more likely to be in 16-18 months and Emma is acutely aware that the longer she remains horizontal the shorter her chances of a meaningful recovery.
Emma continued “My body is now so unwell and the lack of rehabilitation and being permanently horizontal is causing additional complex problems. My body is telling me I have not got 18 months to wait and mentally it is taking It’s toll too. Being horizonal is difficult enough, but being in a highly vulnerable category during a pandemic and the lack of contact with other people has some days been too much to bear and it is becoming so hard to stay positive. I live close to Sefton Park and I dream of the day I can enjoy the trees, the lake, the flowers and the beautiful surroundings I live in”
Emma’s specialist has suggested a private option for her, which he feels would give her the best chance of recovery, which Emma acknowledges could be her last chance for any meaningful rehabilitation to be successful and improve her quality of Life. Emma’s last hope is a clinic in London and she has launched a Just Giving Page to fund the treatment and to purchase a stretcher.
As well as the fundraiser, Emma said she is passionate about raising awareness for other people.
She said: “It was a difficult decision to launch this Just Giving Page especially in the current climate with so many suffering their own hardships but I also really want to raise awareness about how this condition is not only under-researched, but under-funded for people like me, who just fall through the gaps constantly.”
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