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#AreYouMissingMe? - Alice's story

May 24, 2019

Alice is 14 years old and tells us what it’s like to live with M.E.

I’ve been missing from society for three years and seven months. I have many different ailments to cope with that are caused by Myalgic Encephalitis (M.E.)

For the last two years I’ve been suffering with severe sleep reversal. I never know when or how long I will sleep for. I can be awake for up to three to four days with no sleep. Or sleep for a few hours in the day and then be awake all night. No medication helps. It can be very lonely.

I also have something called interstitial cystitis. That’s on another level. I’ve had it for two years as well. I am hypersensitive to light, sound, touch, taste and smell. I find it very difficult to swallow food or even take my medicine, as the feeling can often be overwhelming.

Many people can’t comprehend what I go through on a day to day basis. I haven’t been outside my bedroom for three years and seven months other than for hospital visits. Which are total hell.

Doctors and the NHS have little or no understanding. They don’t want to be educated on this illness. Often I have been brushed aside and left. If it had not been for my parents fighting my case I know I wouldn’t be here today! With lack of treatment and knowledge of the disease that I am battling it can be incredibly isolating and frightening. My body is in a constant battle and M.E. always wins.

It is like you are stuck with this terrible evil illness inside every part of your body. It is just waiting for you to do a little something and then it strikes with a vengeance and you get ‘payback’ and face many weeks, months or years trying to get back to where you were.

People find it difficult to understand, I do too. I never ever wanted this to be my life I have so many aspirations that I want to fill. I am a fighter I will succeed it just might take a while to get there! I want to live my life. Instead, I’m in a darkened room trying to fight this illness. Sometimes I feel like it’s getting nowhere. However, I’m positive I’ll be better and I’ll be taking the world by storm sooner than we think.