To acknowledge the last day of M.E. Awareness Month, I am reposting an excerpt from my diary from three years ago. I had only been sick for four or five months, I had no idea what was going on and felt for sure it would kill me.
Muscles pumped full of lead ~ No. Heavier. Plutonium. Filled with liquid hot metal until they might burst. Heavier than anyone can imagine, aching, ready to strain, buckle, seize up. Ready to sprain with the slightest stretch, no tone, no strength. Climbing stairs is climbing Mount Everest. Slurred words, room spinning, head aching, chest tightening, heart leaping, entire body shaking, vibrating. Chills. Bone-chills. Shivering, unable to talk, nose going to fall off, can’t breathe, feet going to fall off, ice water running up and down my spine, head fogged over with frost, scalp taut, ears infected with cold, ice water spine, ice water spine.
Then, fever heat. Body on fire. Feet going to explode from the pooled blood, eyes burning, brain swollen. Spine and neck blistered with white-hot embers, waiting for bed to burst into flames. And the sweats come. Sweat running down my chest, pooling in my belly button. Sweat behind my knees, my lower back, above my top lip, in rivulets down the sides of my nose, my hair and the base of my skull drenched. And I’m shaking, reaching for water. I don’t want to die. My palms are sweating and my throat is sore and I’m so thirsty, but can barely drink. I have to go to the bathroom, but don’t think I can make it. I have crawled to the bathroom with concrete blocks tied to my arms and legs, while someone is spinning the room around me and zapping me with electrical current and blowing a dense fog ~ more like a smoke ~ into my ears and up my nose and down my throat, so I can’t breathe and I can’t think.
It feels like what I imagine encephalitis must feel like. Meningitis. Botulism. Typhoid. Consumption. It feels malarial, paralytic, neurotoxic. I just keep thinking, I don’t want to die.
Two hours ago, I was chatting on the phone to my mother. I was throwing a ball for my dogs. Without warning, I have to go to bed. It’s like a huge finger is pressing down on me and all I can do is go to the ground. If I try to get up, the whole hand holds me down. Huge hands holding me down so that every movement takes more energy and effort than it ever should or ever has before. I watch someone run up stairs on tv and my eyes tear up with desire and jealousy. All I want is to be able to stand for a while, laugh without noticing because it’s not a rare occurrence, talk with friends without my throat turning into sandpaper and my back seizing up and having to go straight to bed from the exertion. All I want is to sleep. Deeply. Without nightmares. And sit without pain, walk without breathlessness, feel light again, like those hands aren’t holding me down, like I could skip or twirl. All I want is strength, stamina, health. To live life without the fear of repercussions. To live life. To not die.
Rag and Bone Shop of the Heart 
Powerful and poignant diary entry EM. It’s a good job we can’t see into the future – wonder what you would have thought back then if you’d known you’d still be this sick 3 years on? Amazing to think, though, that you have lived through those years – the strength of the human spirit is awe inspiring x
LikeLiked by 1 person
Thank you, my friend. It’s funny, I never could have imagined I’d still be sick, but there was a dark, fatalist part of me that knew this was coming and assumed it was forever. Kind of like a: “Ah, here it is finally.” We are strong, though. Resilience is key. I keep trying to tap that well deep inside. X
LikeLiked by 1 person
wow. so powerful, and personal, and heartbreaking. it’s so scary when you don’t know what’s happening, why, or when (if) it will get better. thank you for sharing such a personal entry.
LikeLiked by 1 person
Linds, thanks so much for the wonderful compliment. It was scary, but, more than anything, I feel sad for that woman back then. I really thought I’d find help and I was grasping at any explanation (overworked, need more exercise, room too hot, adrenaline rush, blood sugar issue). The desperation and the willingness to not trust your gut when you know it is a much, much bigger problem makes me sad.
LikeLike
Is there a way to contact you?
LikeLiked by 1 person
You can email, if you like: akaemilo@gmail.com
LikeLike
Sorry for the duplicate. I need some information
LikeLiked by 1 person
Dan, what duplicate? What information?
LikeLike
Liz, you have an amazing way with words; I felt like I was inside your head. How does it feel to read it now? Are you proud of the fact that ypu made it through, or angry because you shouldn’t have had to suffer so?
LikeLiked by 1 person
Karen, thank you so much! Sorry it takes me forever to respond. I read it back and just feel sad. I had that every night for a year and a half, I think, and I tried so hard to persevere and appear normal. That’s what makes me sad. How deeply scared I was and how unwilling to admit what was happening.
LikeLike
Such a powerful diary entry, I could see this being read out in a powerful documentary/film, the honesty is what makes it so real.
I hope you have a nice weekend and feel as well as possible. Hugs!
H-E x
LikeLiked by 1 person
H-E! Long time no talk to! I spent a few hours catching up on your blog about a month ago. I am so proud of you and amazed by your accomplishments. Well done, you’re an inspiration to so many. Thanks for the lovely comment. ❤
LikeLike