Encouraging Words,  ME/CFS Inspiration

Some Words of Encouragement

Hey friends. A couple of months ago I was having a REALLY hard time dealing with ME/CFS. I was in the middle of a crash and I went to my the Myalgic Encephalomyelits page for some support. Here is my post.  “I’m having a really hard time dealing today. Been dealing with CFS since I was 19. Now 32. It’s gotten significantly worse in the last two years. I have gained weight and the person I was seems so far away now. I don’t know why my husband stays with me. How do you deal? I kinda want to die. … This pic is me sick but still able to do what I loved about four years ago. About to hike to Utah’s famous delicate arch”

I received many supportive comments on this post which I am so thankful for. Many about how I probably have a genetic disease that causes me to have hyperextended arms and legs… haha But of them in particular stood out to me. Her name was Sarah (I would be happy to share her whole name, have to get permission first though! :)) She said:

“Do you still want to pose in an adorable pink tutu and go hiking, if you could? Then you are still the same person. Your capabilities and appearance have nothing to do with who you really are, and of course everyone who loves you knows that. If the roof had caved in on you right after you took this picture, and you survived, would you say that’s a reason to stop living or to stop being lovable? That’s ridiculous, right? Well, our illness is basically just an accident in much the same way. Even the worst symptoms are just stuff we have to live through. Our circumstances are not us. ”

Some days I simply do not feel like me. But I am still me. If I could go outside and go on a hike I would immediately.


This is me in Toledo Spain!.

And this (yes that is a real leopard I’m holding!).


Take courage my friends. Our illness is not who we are. Let’s try to remember who we really are before we got sick.

Tell me in the comments: What did you do before you got sick?





  • leonard s stockert

    hi i am 59 year old male in north dakota got sick after neck and then simple back surgery throat got sore neck stiff and muscle pain all within months went down hill terrible exhaustion and pain then dizzyness been on guafenisen which is musinex helped alot for pain steroid shots in my neck for that helped headaches are better but still can not work a job still crash everyday have to sit a lot first 2 years 2 hours had to lay down from headaches did 2 stem cell therapy 4 months ago one in my spinal fluid helped with headaches but still terrible exhaustion i used to drive for a living drove 4 million miles from work and play sure miss traveling have blurred vision everyday can not fix i used to go and go now i have to pace i can walk maybe a mile then rest sit i help my son with lawn care and tree trimming and running bobcat for trees and snow so hard to go a lot of caffiene helps did all the virus in my body and don’t have hhv6 or any other my spinal fluid is clear of virus i do have high epstien bar virus titteres but inactive tried anivirals 2 years no help did 400 different protocols do not have candida either any help if you have any hope let me know boston is trying fibromalgia drug if you google boston fibro they think fibro is causing the cfs i did there blood test 932 dollars said i have high score of fibro from deformed A cells so don’t know what to do so hard not to function day after day i try and do what i can i love to walk but can not walk to much thanks that is my story and lost many many friends and my parents that made my condition worse stress is bad for me thanks for listening JR

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