I wanted to write a really cohesive and intelligent academic-sounding essay about daily life dealing with chronic fatigue syndrome, but my brain is skipping around, forgetting where I was going halfway through a sentence, losing words, not letting ideas string together the way I think they should. That’s one of the things that is so frustrating about this disease, at least for me. I’ve lost my ability to think and write like I used to do.
(Yesterday I spelled ‘bed’ wrong. I spelled it ‘bead.’ This was after first spelling it b-e-d, and then b-a-d, and then b-a-e-d, and then settling on b-e-a-d. I used to teach high school seniors SAT-prep vocabulary, and yesterday I couldn’t remember how to spell a word that first-graders learn.)
This is what you’re getting instead. Loosely connected strands of thought, my mind’s meanderings as they come to me, hoping to share a bit of what life looks and feels like right now. I don’t know my purpose, really. A few people have encouraged me to write about this, to share what living with ME/CFS is like. Also, for me, it helps me not feel so alone I think, to put my words out into the world, even if only one or two people read them.
Today at 2:30pm I got really excited because I realized that I’d only napped for 3 hours today. I’d been “up” for 7 hours, and of those 7 hours had only slept for 3 of them. And I was excited. Excited because yesterday, except for trips to the bathroom, I was in bed until after 8:30pm and slept off and on for a good portion of that time. Having a day where I don’t nap is cause for me to actually get excited enough to tell people. “Guess what?! I made it through the day without sleeping at all!”
But ME/CFS isn’t just “being sleepy.” It is brain fog, pain, insomnia (weird, right?), muscle spasms, nausea, dizziness, racing heart, indigestion, and all-consuming body-brain-spirit exhaustion like I’d never before experienced. Right now I’ve been sitting, propped up in bed for about 15 or 20 minutes. I’m dizzy from being partially upright, and my arms ache from typing. My lips are numb, and it feels like my breathing is shallow. It feels like there is static electricity (my brain kept writing ‘elasticity’) between my skin and my muscles. It feels like there is lead in my bones where marrow is supposed to be. I just ate a banana with peanut butter, and now my jaw joints have shooting sparklers of pain in them, and my arm muscles feel like I’ve just got done swimming laps when all I was doing was lifting food to mouth.
My snack-in-bed setup
I feel so much guilt about being sick like this, unable to care for those I love in the ways I want to. I can hear your voices in my head now telling me no, that there’s nothing to feel guilty about, that this isn’t my fault. But when my kiddo has to make dinner because I can’t get out of bed, or my love is taking care of everything after a day of work because I have no energy left in me, when I’ve neglected a commitment or I’ve missed an appointment or I’ve cancelled plans with a friend three times in a row… I know it isn’t “my fault” but it just feels really shitty. I try to keep a positive attitude about being sick, and even when talking about it I usually try to put on a good face to the world (both when I see people in person or when I post stuff on social media). But frankly it sucks. It sucks for me, and it sucks for those I love.
To my friends I’ve neglected, I’m sorry. I want to answer your calls, but sometimes the idea of talking and listening and trying to comprehend what is being said is so overwhelming. I know that when we do talk on the phone lately I barely say anything. It’s not because I don’t want to talk to you; it’s because I literally cannot listen to your words and then form my words into sentences right now without feeling like I’ve been cramming for a really hard test or some other equally difficult brain thing. Sometimes I text, but even that is hard.
Likewise, I want to spend time with you. So I make plans. But then my body intervenes, and I end up canceling and feeling so crappy about it then I just stop making plans. I’m not canceling because of you; I cancel because the day before I made homemade cookies and didn’t expect it to totally sap me, but it did, and now I’m bedridden. Or because I’ve realized that I have enough energy to drive myself there, but I’m pretty certain I won’t have enough to drive home. I hate it, so much. I want to see you, but I don’t know how to say, “Will you come over to my messy house and sit next to me in bed in mostly silence and drink tea (that you’ll have to make) and pet cats with me?” That’s really vulnerable.
There’s an element of growing up that is about making choices, and I know that. You know, “Do I go out dancing with my friends, or stay home because I have a 6am flight and have to wake up at 3:30 in the morning?” Or, “Do I buy this adorable purse at Target, or not and actually have money to put in a purse?” It’s one of the kinda sucky things about becoming an adult; having to make those choices yourself, and then having to live with the consequences of whatever you chose. When I got sick, I didn’t anticipate that this need to make choices and live with the results was going to multiply exponentially. But it did. And it continues to. The need to prioritize what is the most important, what means the most to you, what will be okay to let fall by the wayside and what won’t. And even still…even still I can’t do all the things I think I need to or that I truly want to.
I think back to five or six years ago. I would wake up and get my two kiddos I was single-parenting off to school, go to the college and work a full-time, demanding job involving balancing budgets and writing grants and interacting with people and organizing programs. Then, I’d stay for a few more hours to teach basic English and Math skills. I’d go home to my high energy children, where I’d get them fed a (usually) homemade dinner, play with them for a bit, and tuck them in to bed. After they were asleep I’d pull out my grad school work and do that until I crashed into bed late at night. On the weekends we were going to the farmer’s market, playing outside, doing art projects, taking hikes, or heading to the movies. There were burlesque shows, and crafting nights, and going out dancing with friends.
Looking back, I’m kind of amazed at myself. I long for the ability to do even half that now, and wish that I had appreciated it more when I was able to do those things. My life looks very different now.
Newton’s law that “every action has an equal and opposite reaction” is multiplied. Every action has the potential for an extreme reaction. Everyday things that I used to take for granted have now become choices to weigh out. If I take a shower now, will I be able to drive to pick up my kid from school later? If I start a load of laundry, will I have the energy to make lunch? I plan errands based on what else I have going on that day or that week. On the one night a week I teach I have to make sure I take it easy during the early part of the day so I’m well enough to do my 2-hour class. If I have a performance, I’ve got to make sure I don’t have anything scheduled the next few days.
Life gets a lot smaller when you’re sick. Your house, your bedroom, the world of the internet. Getting out into the bigger world takes planning, both for the outing but also for the likely fallout from how your body reacts to the outing.
I had a show two weekends ago, and my body was not happy about it. I spent most of the following week in bed. I told myself it was probably because the act was extra long (7 minutes instead of the normal 4 or so), because it was super strenuous and I put my all into it, because I’d had a busy few days before hand. Yes, that probably all contributed to it. I had a show this last weekend too, though. I’d done pretty much nothing but rest the days leading up to it, and it was a normal-length act. I even left not long after being done with my act instead of staying for the entirety of the show. But I spent all day yesterday in bed, and have been in bed a good portion of today too.
It is hard to realize that 5 minutes on stage means days in bed. It is hard to realize the things the body no longer has the capacity for.
I recently watched the movie “Unrest” which is a documentary about ME/CFS. At one point near the end of the film, the husband of the main person in the documentary says to her: “Every time you do something you love, I know you’re going to end up paying for it.”
It’s true, and I hate it. I’m tired of paying for it, of not being able to do the things I used to love to do, of doing the things I still love to do and then hurting for days. Really, of even paying for the things that are not “big deal” things like performances, but just regular things like bathing or household tasks or running errands.
I’m just tired. So very tired.
I feel like I should put some positive spin on this, or try to be upbeat, but honestly right now I don’t have it in me. I guess I will end with this…if you have someone in your life with ME/CFS, please reach out to them. Go sit with them in silence or bring them soup or really anything that will make their life a little easier. If you are reading this and this is your reality too, I see you. I see you and I feel you, and I’m sending all my love your way.