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!


2 comments 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

  2. Dear Tom

    Thank you for your story and for the courage and fortitude you have! I am only housebound, not anywhere near the level of severity thank you for your story and for the courage and fortitude you have! I am only 95% housebound, not anywhere near the level of severity of you endure. I just want you to know you have my regard and respect and I love your lizards! Also that great dog in the one picture. Looks like a miniature version of one I used to have as a kid. I just want you to know you have my regard and respect and I love your lizards! I know it is not anybody’s place to speculate on whether you will get better, but having done advocacy in Canada for 12 years I am aware of that at least for those who are under 20, the chances of partial or complete recovery are among the highest of any group.
    I hate to see anybody suffer so terribly, especially someone so young as you. If you are able to listen to music, check out the song troubled times on my YouTube channel, Grey Matters Duo. I think you will know what I’m singing about. Another one – All Over The World.

    My best wishes, I am cheering you on and praying for you,

    Linda MacDonald
    Alberta severe ME patient and past ME advocate for 12 years
    Former linguist, physical therapist and touring Canadian folk singer, before severe ME.

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