The past 2 to 3 weeks have been extremely difficult as I fight another ME/CFS flare. Everytime I have a bad flare, I feel like I did when I first got sick. I’m scared, frustrated, angry, confused, depressed and feeling so sick I don’t think I can go on. To be honest, if it weren’t for my son and husband I probably would not still be here. I have felt many times over the years that my life has been a waste thanks to ME/CFS and I’m tired.
I’m tired of always feeling bad; I’m tired of never knowing from one minute to the next what is going to trigger the demon of ME/CFS in me; I’m tired of wanting to accomplish so much with my life but always being held back because my body won’t let me accomplish what I would like. I’m tired of not being able to play with my son as much as I would like. I am so tired of being alone with this. It doesn’t matter how many friends and loved ones you have around you. When you have CFS, you always feel alone because no one can understand what it is like to live like this. I’m tired of losing friends and relationships to ME/CFS. I’m tired of being in pain all of the time. I’m tired of having to explain to yet another person why I can’t do this or why I can’t do that. I’m tired of working hard to get healthy only to be met with another flare that knocks me on my ass for weeks or months.
One thing that chronically ill patients will say is that they hate when their illness is compared to cancer or AIDS. People will try to cheer us up by saying, “At least you don’t have cancer/AIDS/any terminal illness”. When people say this, it devalues our illness, it devalues us and it is very insensitive. People don’t realize that an illness does not have to be terminal to be severe. ME/CFS is just as devestating as cancer, AIDS, and many other illnesses. Who is to say for sure that our illness is not going to kill us?
How many of us have wished for there to just be an end. Yes we will eventually die, that’s a guarantee. The thought, however, of living another 40 years like this just seems so unfair and so unjust. I’ve already lost 20 years. I think I’ve done enough time. I want a cure. I want medical help that’s not going to bankrupt our family. Right now the only help for ME/CFS patients is too expensive for the average working person to afford. I want to be taken seriously. I just want a life.