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Fuck You ME/CFS

I’m really scared right now. It is a fear that is raw, primal and incredibly vulnerable. It is fear for my basic way of life, fear of loosing the tiniest bits of life I have managed to scrape together since improving a tiny bit a year and a half ago. I’m afraid for my life itself because when you know severe ME/CFS, you know a living death.

I went way past my limits three days ago having two friends come over and hang out with me in person. Two friends I met on the internet, one whom I’ve known for over ten years. I took Ativan so I could interact with them without it hurting me. But one side effect of Ativan that has always been dangerous is that it makes you feel like everything is ok. So I pushed myself to just hang out with them the way I wanted to, and do what I wanted to do with them the way most people live every single moment of every single day without thinking twice.

But you can’t live like that with severe ME/CFS. Everything must be controlled, and monitored and limited. An enormous effort must be constantly put into monitoring your energy level and your energy expenditure and evaluating every action based on previously engaging in that action and what the outcome for your health was from that action. I didn’t do that three days ago because I haven’t had a friend over to visit for fun in over ten years. I had no routine to follow. And I didn’t realize going into that day that I was heading into uncharted waters.

My life has been a consistent routine for 9 years. I do the same things in the same way, at the same time every day, and if I ever introduce something new I introduce it gradually with incredible caution while monitoring how I feel and then monitoring how it affects me afterwards.

I didn’t do that three days ago. I just had fun. I was spontaneous. I was human.

Spontaneity and humanity are the spells of death for ME/CFS patients. We must become robots or we wither and die. I let my heart beat for just half of a day and after the excitement of them being here faded I checked in with myself and it hit me. "What had I just done to myself?" I felt absolutely horrible. My head was swimming in thick haze. I was too exhausted to clean up my room and put things back after clearing them away to make room for their chairs. I just had to stop and lie down and then the fear hit me.

What was done was done. I could not take it back. And I had no idea how it was going to affect me. I was powerless and helpless and could do nothing but wait and see and pray to this cruel world that I would recover and be ok.

The thing is that sometimes when you overdo it like that you are not ok.

I got worse, plummeting into the worst 3 years of this illness - an absolute living hell - after overdoing it for just one too many days in a row in order to be filmed for the documentary Unrest. I had just pushed myself to communicate for multiple days during a time when I could hardly communicate except by writing out cards and leaving them out for my caregivers to read and try to figure out, which often took painful long hours. But I had to communicate these things sometimes. This time because there were elements of my routine that were hurting my stomach and I needed to make changes or my stomach was going to get worse than it already was. And the next day the Unrest film crew was scheduled to come.

I knew I needed to rest that day. I could feel it. You know the feeling. It is a weakness that comes from someplace deep inside. I always think of the quote "Like butter spread over too much bread" by JRR Tolkien. But I also knew how important this documentary was. So I pushed myself and hoped for the best. But the worst happened. I began a steady decline in health the next day that kept going seemingly forever past what I ever thought was possible. My health and my energy limit just kept going lower until I could no longer move for most of the day, could not communicate in any way via hand writing, text on a phone, gestures in person (I could not move a muscle with a person in the room) or any other way except to do things like leave out paper towels folded into arrows pointing to things and hope my caregivers would eventually figure it out, which often took hours until I was on the verge of tears from the frustration and exhaustion and painful lack of energy. And I knew I would get worse every time I communicated like this.

Today I lie here not knowing what is going to happen to me. Will I loose all the tiny bits of life I have scraped together over the past year and a half? Will I begin a descent into another living death? Will I loose a beautiful connection I have made with a dear friend who I have grown to love with all my heart? If I do will she still be there if I ever come out of this? Last time no one was left when I re-emerged from the darkness. Will I be alone again? Will I lose the ability to communicate my basic needs? Will my caregivers start hurting me again everyday because I am unable to tell them to stop doing a certain thing a certain way? Will my stomach fall apart and stop accepting food even from the pump? Will I starve to death? Will I loose the little joys from bits of things that have brought so much light into my life this past year and a half? Will I return to stillness and all things darkness?

Fuck you ME/CFS. Fuck you for taking and taking and taking from me. Fuck you for making me so terrified when I let out a bit of humanity. Fuck you for the uncertainty. Fuck you for all the loss. Fuck you for the terror. Fuck you for the horror. Fuck you for the darkness. Fuck you.

No matter what happens, I will not roll over and die. You will have to take my life from my cold dead hands.

Donate to ME/CFS research at the Open Medicine Foundation to help stop the suffering of millions and end ME/CFS.








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