Tom’s Story

Hi, I’m Tom. I suffer from a disease called ME (myalgic encephalomyelitis), otherwise known as CFS (chronic fatigue syndrome). Although not a very rare disease, it is considered one – probably due to the lack of research & awareness, which is why I’m writing this!! ( please check out my instagram page where I post a lot about my illness:

In the 2 years that I’ve suffered with ME, it has completely destroyed my life. It has taken away all the things I used to enjoy & instead has left me paralyzed in both my legs & left arm, leaving my right arm to be my only working limb. My right arm is extremely weak and I am not able to do much with it. It scares me every night to fall asleep & wake up not being able to move at all. No one should have to deal with these thoughts on a daily basis. NO ONE!!

Every day I wake in severe chronic pain that affects every single part of my body. It’s affects my muscles, joints, bones & even just my skin! Some parts of my body, such as my feet, are so incredibly sensitive I cannot bare for them to be touched whatsoever . I have still not found any pain killers that work, even though I have tried many many many medications, some nearly as strong as heroin!!!

ME has also taken away my ability to eat, which means I have to be tube fed straight into my intestines and veins!

I am very rarely able to read, watch TV, play games & really struggle holding conversation due to the severe brain fog & sensory processing issues I live with almost all of the time. I have not been able to stand, let alone walk in well over a year! And I don’t think I’ve even sat in a chair this past year!!  I am also severely underweight which causes it’s own set of problems. I do not sleep well at all. Recently I have only been getting 2-3 hours of sleep in the whole 24 hour period, which just adds to the complete & utter exhaustion the ME brings. There is literally no escape!

The ME has also caused me to be severely depressed & filled with anxiety at all times. For me now, I feel there is no hope. No hope of getting my old life back or even being out of pain ever again. I don’t want to live like this yet there is nothing anyone can do about it. There is no cure & no treatment. There isn’t even any research!! All we can do is try to make me & my life as comfortable as possible!

I don’t have a clue how much worse this could all possibly get, or how long this hell will last. It could be a year, 2 years, 5, 10, 20… Or maybe I won’t ever feel better… Who knows?!

So for the sake of me & all the other 17 million people in this world suffering the cruel & inhumane life that ME causes, please please PLEASE just share this post. Even just making 1 more person aware of the extreme difficulties ME causes IS making a difference. Don’t you want to make a difference?

Do you want to share your own story? Email us!


One comment on “Tom’s Story

  1. Philomena Cronin says:

    Hi Tom
    This is your Auntie Phil here we love you and are thinking of you everyday and praying for you.
    Love always xxxxx

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