I don’t know of a worse situation to happen to someone than to end up with Long Covid or ME/CFS. It is the Living Death… #LongCovid #pwME #MECFS

When Beth Mazur was visiting me just before she died, I said that I felt like being so sick for so long was like being pre-dead — having already died and yet still being alive. And I talked about how that experience struck me as interesting: What is life when you're already dead?

so much resentment gets stored in the body when words go unspoken, especially words that should’ve been used to defend yourself.

If your mind is telling you suicide, let it know that you’re going to seek a second opinion from your loved ones/doctors.

'Why are you constantly posting online about your struggles?'

. . . because it is the only place where I feel I have a voice & people listen to / believe / help validate my lived experiences.

Has anyone looked through their Facebook memories and just … cried.

I remember when I was moderate. Even then I was able to do things.

Grief on top of grief.

i’m doing really well in my life rn as long as i don’t think about anything that has ever happened or anything that might ever happen

When my mental health declines.
I either sleep to much, or not at all.
I will cancel plans.
Stop talking to friends.
Push everyone away.
Stop eating, or binging.
Stop taking care of myself.
Have no motivation or energy.
And think about suicide way to much.
#MentalHealthAwareness

Held captive by this hideous disease.

I’m terrified of death. I can’t bear the thought of it. But I also can’t bear the thought of spending the rest of my life, what could be 20-50 years, feeling like this. This is hell; pure torture. A sick fucking joke. 3/

It’s relentless & everlasting, with no breaks or relief. It’s impossible to enjoy anything when every cell in your body feels poisoned & like it’s suffocating… like you could collapse & die at any given moment. 2/

No amount of acceptance will erase or take that away. It’s buried deep in my heart & soul. I know this isn’t the life I was meant to live… none of us were.

I want to know who I could have become had I had the chance to grow & develop into my fullest potential. 😪

/end

I will always & forever want & desire to be my amazing, brilliant, beautiful, high functioning self. Nothing will ever compare to that. I will always wonder what would have happened, experiences I would have had, ppl I would have met & places I would’ve gone. 9/

I want to be who I was in 2020 & never lose myself in the first place. I want to know who I would have become & where my life would have taken me if I never got sick. That is my deepest, truest desire. And I can’t attain that here in this life. 7/

What I ask myself now is.. what is it exactly that I’m holding onto? The memory of a life that is slipping through my fingers. Dreams that I am no longer capable of making come true. I don’t want this body or this life. 6/

'Traumatized people relive the moment of trauma not only in their thoughts and dreams but also in their actions.'

--Judith Herman

I desperately need people who don't have an energy-limiting condition like ME to understand how UNBELIEVABLY draining it is to interact with other people, for PLENTY of clear biological reasons as well as a few psychological ones.