A freak fever left me TRAPPED in my own body
A man who could not communicate properly after being completely paralysed was able to say ‘miss you’ to his girlfriend using just his eyes and a letterboard.
Taylor Edgell, 26, was struck down by Guillain-Barré Syndrome hours after the pain in his leg was dismissed as muscle strain.
Paralysed and unable to breathe unaided after developing the rare autoimmune disorder, Taylor was left bedridden in hospital for three weeks.
He said: “It was such a strange feeling, like I was willing my body to move but it just wouldn’t work. It was like there was some disconnect. I felt very locked in.”
The services and sales engineer’s ordeal started in July last year when he began suffering with a bad fever.
“I was at home when I came over all dizzy and kept having hot and cold flushes. I had to take a week off work but after the fever disappeared, I felt alright.
“A week later I was at my girlfriend Hannah’s when I got an agonising pain in my legs.”
The next day, still suffering, Taylor set off on a work trip to Stratford Upon Avon, to attend a conference.
He said: “While I was there, I was just about coping with the pain but at night it got so bad that I couldn’t even sleep. I called an ambulance, which took three hours to reach me.”
Taylor was examined at Warwick Hospital and was told by a doctor he had a case of muscle strain.
He said: “I was given a suppository and some painkillers, then I got an Uber back to my hotel. The day after, I travelled back to London but as I walked through my front door, I fell over and couldn’t get back up. My mum had to help me into the car and she drove me to the hospital.”
At Queen’s Hospital, Romford, Taylor was diagnosed with Guillain-Barré Syndrome. The condition affects the nerves and can cause problems such as numbness, weakness and pain. It can be life-threatening and some people with GBS are left with long-term problems.
He said: “The doctors believed the syndrome had been triggered by the fever I had. The paralysis moved up my body very slowly, because my immune system was destroying my outer nervous system. It was terrifying.”
The condition left Taylor, from Rainham, Essex, fully paralysed and his thoughts turned to his girlfriend Hannah Hastings, 26, whom he had been dating for just six months.
Despite being in a new relationship, Hannah was committed to sitting by Taylor’s side, supporting him every day.
She said: “To see him go from not being able to walk to only being able to move his finger was horrifying.
“The last message he sent me before he couldn’t talk was “I love you”, and that gave me hope he would pull through.”
Taylor was unable then given a letterboard.
He said: “The doctors had to find a way to communicate with me, so I was shown the letterboard. I had to look at each letter to spell out a word.
“Though frustrating, it was better than not being able to communicate at all. When visiting hours were ending and Hannah had to leave the hospital, I spelt out ‘miss you’ on the board. I just wished I could have said it out loud.”
After being in hospital a week, things took a turn for the worse and Taylor became fully paralysed. He was put on a ventilator to help him breathe.
He said: “I woke up with a tube in my mouth and wasn’t able to speak. It was very frightening.
“I desperately wanted to be able to talk to Hannah and my family, but I couldn’t even move my mouth. Just knowing they were there meant a lot though.”
Taylor was given a tracheotomy and eventually began to make slow progress, with Hannah and his family helping him learn to eat and to communicate using the letterboard.
“My family were a huge support,” said Taylor. “My youngest sister read me Charlie and the Chocolate Factory until I fell asleep and my parents were there every day.”
As the weeks passed, he slowly began to learn to talk again and was only able to speak for a few hours a day using a speaking valve.
He said: “The first time I spoke was very emotional. Sadly, all I could manage was a gargled hello as my vocal chords were very, very weak. But every time I tried, it got a little easier.”
Taylor also had physiotherapy to help him walk again, because he had lost leg muscle.
He said: “During my first session with the physio, a few of the staff helped lift me out of my bed so I could learn to stand again. Something that had once been so simple was absolutely exhausting.”
During Taylor’s stint in hospital, Hannah’s birthday was nearing, which he used as a goal to get better for.
“I really wanted to be well enough to spend the day with her and while in hospital, I was getting my mum to order her presents just in case I couldn’t make it.”
With his new focus, Taylor battled from the brink of death and was well enough to attend his girlfriend’s celebrations.
“We went bowling, which was a bad idea as I fell over,” Taylor said. “I managed to laugh it off and though we couldn’t do too much, I was just thrilled to be able to spend the day with her.”
Hannah said: “Having Taylor with me was the best present I could have wished for, but I would have spent that day wherever he was.”
Now she often reflects on the whole experience.
She said: “I visited him everyday while studying and working two jobs, because I couldn’t bear to not see him. I was so scared the worst would happen.
“The first two weeks were the hardest. I cried myself to sleep most nights, not knowing what news I would wake up to.”
“Slowly seeing Taylor get better and having one less tube attached, or his body make a new movement made me so proud. He never lost his motivation.
“The whole experience has bought us closer, especially because of that period of time when we could only communicate by words and letters on a board.”
Taylor has made a miraculous recovery and has been told by doctors there is a 3% chance GBS will strike again.
He said: “I still have some facial problems and can’t smile like I used to. I also get tired easier but otherwise I can function as normal. I know GBS can sadly leave some people with severe lifelong problems, but I am thankful to be one of the lucky ones.”