A teenager was left with the devastating illness ME after a parasite burrowed in her EYE.
Skye Wheeler, 19, is housebound due to the incurable illness which leaves her suffering unrelenting exhaustion and profound pain.
She fell ill aged 14 when a parasite (Acanthamoeba Keratitis) burrowed in her cornea and ate away at her eye – where it is still ‘sleeping’ – before the condition developed into ME.
Skye spoke out to raise awareness of the often-misunderstood condition to mark Severe ME Awareness Day.
The teenager, from Cambourne, Cornwall, said: “I have a parasite in my eye. The Acanthamoeba Keratitis burrowed into my cornea and ate away to create snail trails around my eye.
“I was told it is found in tap water. The ultimate mistake was a droplet of water between my eye and my contact lens. It could blind me, or even kill me one day.
“Despite years of treatment, I still have this parasite in my eye.
“I am told that it is dormant. It goes into this stage to protect itself, picture it curling into a ball.
“We will never be able to tell whether it is dead or not or if and when it may reawaken so I have to live with the feeling of never knowing.”
Skye started to have symptoms of ME just a month after coming off the medication doctors prescribed to treat her eye problem.
ME is a neurological condition which causes extreme exhaustion, pain, brain fog, and a variety of other symptoms, such as post-exertional malaise.
She said: “The fatigue is like no other.
“I actually wish there was another name for it. There is nothing I would give more than to transfer my symptoms to another person for just an hour.
“The fatigue we feel is like a thousand bricks being tied to your body. You can’t muster up the energy to put on foot in front of the other.
“You can’t get dressed and ready for the day without a blackness descending over your eyes. You can’t carry a conversation let alone even speak.
“The bottom of the line is that there is no energy there in the first place to channel through your body to all the right places. The only thing you can do is lie and exist.”
Skye told how her friends have gone off in different paths and she “just exists” within the confines of her small bedroom.
“My life has been ripped to pieces and then burnt down into nothing but ash and smoke. My life was planned out.
“I lay in the dark because of light sensitivity alone and waiting for someone to return home and take me to the toilet. My bed is my world. My bed is my support. It has seen me through endless days of torturous pain, fatigue and inner turmoil.”
Today is Severe ME Awareness Day and campaigners and patients, too long hidden behind the closed curtains of UK homes, are fighting back, more vociferously than ever before.
Rosie Halsall, 17, from Liverpool, has had ME since the age of nine. She is severely affected.
At her worst, she was unable to lift her head from her pillow, was spoon-fed and unable to sit for more than 30 minutes without fainting.
She said: “ME has changed my life. I can’t sleep in my bedroom, instead in a downstairs room. I’m sensitive to lights and sounds, so regularly wear sound reduction headphones and sunglasses- particularly on bad days.
“People don’t tend to see the bad days, the days when I’m crying in pain, when I’m too exhausted to wear ‘proper’ clothes, and the help I need from my parents with washing myself.”
The teenager now has a bedroom on the ground floor of her parents’ home because she is often too weak to make it upstairs.
ME leaves Rosie in a wheelchair and unable to walk or stand unaided.
“I still don’t have the strength to stand or walk and I haven’t attended school since 2014,” she added.
“I have a very good support system around me who understand my illness, however I have lost contact with people I used to talk to every day and friends who I grew up with.”
The ME Association is at the forefront of improving access to care, treatment and research and removing the disease’s stigma.
A spokesman for the charity said: “It is an invisible illness. When you see us, we might not always look ill, but when our symptoms flare, the effects are obvious.
“It can feel like a constant flu, the smallest exertion can floor us, our bodies are painfully sore, restful sleep eludes us, light and noise are intolerable, and ‘brain fog’ causes confusion.
“M.E. remains a hidden disease. There is no known cure and no effective treatment – and it can lead to greater functional impairment than multiple sclerosis or cancer.
“The most severe sufferers are often the most hidden. A lot of people give up and their families are left fighting, so they can’t raise awareness. There’s a higher risk of suicide with ME sufferers.
“People find it hard to understand, with the medical advancements, how something like this can happen in this day and age.”
For more information on ME, or to support research through donations, visit www.meassociation.org.uk