A woman spent months being "fed through a tube" at Alder Hey after she woke up with one of her eyes still closed.
Sioned Erin Hughes, who goes by Erin, woke up one morning and struggled to open one of her eyes. At first the now 24-year-old didn't think anything of it, but soon "a pattern started to develop" and it became obvious there "something serious was happening."
Erin, who was a young teenager at the time, told Wales Online: "I was working as a waitress in a café – having one eye closed was proving almost impossible.
READ MORE: 73 faces and codenames of dozens of EncroChat criminals linked to Merseyside
"Then my voice started getting increasingly nasally – I had to force my voice out or it would disappear altogether. It was such an odd experience. As a young person at the time I think there was an element of naivete there – a part of me was thinking that one day I would wake up and I would be better but a pattern started to develop and it was obvious there was something serious happening.
"My speech eventually went – I couldn’t chew or swallow. After that I lost the use of my arms, hands, and then my legs." With her mum by her side Erin was transferred to Alder Hey Hospital in Liverpool in the August of 2013, where she would receive treatment for four months.
Of that experience she said: "I was fed through a tube and I endured collapsed lungs, pneumonia, and a lot of infections. I had a lot of treatments but I had nothing but the best care while I was there.
"My mum was staying at the Ronald McDonald House for four months while my dad looked after everyone back home. The impact it had on my family was significant – it just ruined all of our lives during that time. It wasn’t just my suffering but my whole family suffered as well."
Erin was diagnosed with a rare autoimmune condition called myasthenia gravis, which affects just 14 out of 100,000 people. The condition causes muscle weakness and most commonly affects the muscles that control the eyes and eyelids, facial expressions such as smiling, chewing, swallowing, and speaking but it can affect most parts of the body.
She added: "Being that trapped in your own body your mind will never be the same again. I still have this condition – there is no guarantee that it won’t happen to me again and that is something I have to live with."
Erin, now 24, would return home just in time for Christmas that year. But the impact of the experience would not hit Erin until years later. From December 2020 until May 2021 she suffered with post-traumatic stress disorder (PTSD) and attempted to take her own life within those six months.
She said: "I so desperately wanted to live but also wanted to leave this body and mind, which had failed me completely at this point. It felt like it all came at once – a lot of it was PTSD and realising now that I didn’t have the methods to cope with that. It was during the coronavirus pandemic so it was difficult to get the professional help that I needed."
Erin said she still lives with PTSD and has since been diagnosed with borderline personality disorder. She also still lives with myasthenia gravis and is going through what specialists call a "minimal manifestation" which means that although Erin has no symptoms of functional limitations from the condition she still suffers some muscle weakness at times.
She continued: "The condition affects me to this day but not to the same extent as a couple of years ago. I’m still receiving treatment and care. I get terrible fatigue at times and the first sign that I notice when I’m struggling is that I can’t smile that much – the smile is the first thing to go and then I know that I need to rest before I get better."
Erin has found solace through her writing. In the summer of last year she won the prose medal for her work at the National Eisteddfod in Tregaron. Although she acknowledges it is not for everyone writing has allowed her to come to terms with what has happened in the past but also released her from that period of her life.
She added: "My condition has taught me that I have to live life to the fullest. I can't let myself think that I could become ill again whether that is physically or mentally. I wouldn't be able to live otherwise. I have to live with what stands before me today rather than think about what might happen."
Receive newsletters with the latest news, sport and what's on updates from the Liverpool ECHO by signing up here
READ NEXT:
Lakeland's 1p per night item means there's 'no need to use central heating'
Nicola Bulley friend shares '11 facts you may not know' about missing mum case
Headteacher, husband and child found dead on school grounds
Gang's £1m plot to smuggle cannabis and cash into Isle of Man using pushchairs and cars
Shop caught selling cigarettes to children and lighting them on CCTV
