Where I Go When I Disappear

Original photo credit: Daniel Oines

Sometimes I drop off the face of the Earth for a few days. I might make plans with someone, but my husband shows up without me with a vague, “she’s sick” comment. Sometimes I receive “Are you ignoring me?” or “Are you alive?” text or social media messages because I haven’t replied in a couple of days.

I just pulled another disappearing act, so instead of being mysterious (though, I do enjoy being kind of mysterious), here’s what I’ve been up to the last couple of days.

(Times are approximate. Everything else is completely accurate.)

Wednesday, 11 P.M. – Start to feel a pinch in my neck. A muscle spasm is starting up. Take a muscle relaxer and my daily anti-headache medicine that’s supposed to prevent killer headaches and go to bed.

Thursday, 6:30 A.M. – I reach over to shut off the alarm clock and go, “ohhhhhh SHIT!” because that hurt. Muscle spasm at the base of my skull? Check. A headache that’s 10x worse than any migraine I’ve ever had? Check. That anti-headache medicine is such bullshit…

Thursday, 6:35 A.M. – Roll out of bed. Wake up the girls.

Thursday, 6:45 A.M. – Sit on the couch with my head in my hands, seconds away from screaming at my kids, “Get yourselves ready for school! Why do I need to tell you to get dressed every morning?!”

Thursday, 6:50 A.M. – I go ahead and yell at the kid who still isn’t dressed yet.

Thursday, 7:10 A.M. – Take a muscle relaxer. I couldn’t take it until the kids were close to being out the door because it knocks me out.

Thursday, 7:20 A.M. – Imagine small men inside my head pushing my eyeballs out of my skull… because that’s pretty much what this pressure in my head feels like. Go to bed and pass out.

Thursday, 1:00 P.M. – Wake up and force myself to eat some cereal. Scroll through Facebook and see some interesting topics I want to chime in on, but I don’t comment because my brain is fuzzy. I can’t type… or think… and I’d prefer my friends believe I’m literate. I am a mutant with the worst super power ever.

Thursday, 1:20 P.M. – Feel nauseated. Go pass out again.

Thursday, 6:20 P.M. – Get up and force myself to eat some oatmeal. Notice a FB message from a friend and respond. Talk to my kids about school. Tell my kids to turn their games down.

Thursday, 6:30 P.M.Beg my kids to turn their games down.

Thursday, 6:50 P.M. – Try to stay in the living room with my family. Feel nauseated. Go pass out again.

Thursday, 9:00 P.M. – The vomiting begins. I make it to the bathroom. A victory!

Thursday, 10:00 P.M. – I finally manage to contort my body into a position that doesn’t put pressure on my neck.

Thursday, 10:10 P.M. – “LOL – Nope! You’ve been in bed all day, time for a cramp!” – left hip

Thursday, 11:00 P.M. – There is no such thing as a comfortable position. Consider banging my head into the wall until I pass out.

Thursday, 12:00 A.M. – Wake up again. Roll over and feel a new and totally not improved sensation of pain. Do that whole, “This sucks. This sucks. This sucks,” mantra. Wish I could just cut my thumb off again instead of dealing with this headache.

Friday, 2:00 A.M. – A scared child enters the bedroom. I assure her I’m not dying. I have to haul my ass out of bed and tuck her in to prove this. Act like I’m not in nearly as much pain as I’m in.

Friday, 2:10 A.M. – 4:00 A.M. – Just being restless and not sleeping and wanting to cry but knowing from experience that crying just makes headaches like this way, way worse. So, I lay there and tell myself I’m being a baby until my brain is finally all, “I can’t even handle this anymore, let’s go back to sleep.”

Friday, 6:30 A.M. – Alarm goes off. My headache is worse. I’m optimistic that if I just get another 10 minutes of sleep, I can shake it off. I hit the snooze button.

Friday, 6:40 A.M. – I was wrong. Give the ceiling a dirty look. Sometimes my bedroom ceiling can be really freakin’ smug.

Friday, 6:45 A.M. – Roll out of bed. Walk into the wall on my way down the hall. Wake up the girls. “I will stand here until you get out of bed. I will probably throw up on you if I stand here for very long. I’d get out of bed if I were you.” They get up quickly.

Friday, 7:15 A.M. – Kick my daughter out of the bathroom mid-way through brushing her teeth so I don’t accidentally throw up on her head.

Friday, 7:20 A.M. – Go back to bed. I can’t take any medicine because it’ll just come right back up.

Friday, 10:00 A.M. – Finally decide there’s no way I can make it to the Parent/Teacher Conference today. Tell my husband he has to go by himself.

Friday, 11:00 A.M. – 1:00 P.M. – I keep telling myself, “I will not throw up. I will not throw up,” because for some reason I keep thinking if I will it hard enough, I won’t actually have anything wrong with me. I keep throwing up anyway.

Friday, 12:00 P.M. – The kids are home from school and I’ve made it to the couch. Get tackled by a Kindergartener. Say, “I love you too” instead of, “Oh my God! Stop!” Congratulate myself for that.

Friday, 1:00 P.M. – Lay on the couch while the kids play and my husband goes to the P/T Conference. Feel like a crappy parent.

Friday, 2:00 P.M. – My husband comes home. He asks me something. I turn to reply and that makes me throw up again. At least I’m getting exercise sprinting to the bathroom.

Friday, 2:15 P.M. – Tell my kids I’m proud of their good grades.

Friday, 3:00 P.M. – My husband and the kids have vacated the premises. I am so bored. I AM SOOOO BORED. I hate everyone who can sit up without vomiting right now.

Friday, 3:30 P.M. – Turn on Futurama. I’ve seen all the episodes, so I can close my eyes and listen without missing anything. It’s my go-to headache show.

Friday, 5:00 P.M. – I make myself a piece of toast. It stays down… barely. I lay back down on the couch.

Friday, 6:30 P.M. – I guess I fell asleep. My husband and kids are back.

Friday, 8:00 P.M. – I keep down a 1/2 cup of applesauce.

Friday, 8:15 P.M. – Tell my kids I’m proud of their good grades because I forgot I already told them that.

Friday, 9:00 P.M. – I risk taking another muscle relaxer. It stays down and I pass out on the couch.

Friday, 11:00 P.M. – I’m gross and sweaty and I want to take a shower. I also feel really dizzy and I’m pretty sure I’d fall, so I just stay on the couch.

Saturday, 3:30 A.M. – The pain has moved from the base of my skull to the right side of my neck. It’s actually an improvement because the headache is gone. I usually don’t throw up when it’s just neck pain.

Saturday, 10:00 A.M. – I still have a moderate muscle spasm in my neck. (I call it moderate, compared to the other neck pains and headaches I have. Other people might call it a harbinger of death.)  I get up and take a shower. A lot of things in my neck pop while I wash my hair. It hurts.

Saturday, 10:45 A.M. – Put on clothes. My jeans are too loose. This is why I need three different sizes of pants. This is also why I eat anything I damn well please when I’m felling all right. (You can’t see me, but right now I’m scowling at anyone who might be sitting there judging me for eating my weight in Oreos.)

Saturday, 11:00 A.M. – Oatmeal and coffee. Hallelujah!

Saturday, 11:30 A.M. – Take another muscle relaxer to take the edge off. Force myself to stay awake because I’m really tired of sleeping (see what I did there?) Get caught up on Facebook because if I try to do anything more strenuous than that my headache will come back.

Saturday, 1:00 P.M. – Look at the piles of dishes in the sink. Turning my neck to do that hurt. Dammit.

Saturday, 2:00 P.M. – Decide that washing the dishes isn’t worth a back-to-back headache and write a blog post instead.

Saturday, 2:30 P.M. – Finish up blog post while eating a chicken pot pie. I’m pretty sure this is the best thing I’ve ever eaten.

I was only really down for two days this time, which wasn’t as bad as it could have been. Sometimes I get an extra day or two of this.

I’m not sure how to explain what these headaches are like. I guess the closest would be… imagine the worst muscle spasm you’ve ever had in your neck or back. Add a migraine to that. Now, add several more migraines on top of that. (If you think I’m exaggerating, just keep in mind that when I cut off part of my thumb I was telling other people how to perform first aid on me… and then I hit on the guy who showed up in the ambulance. I’ve had my wisdom teeth removed without effective local anesthesia (thanks again, EDS!) I do get typical migraines sometimes and I’d go to work with them and just power through without any medication. I have an unusually high pain tolerance.)

Right now, I’m still in some extra pain, but I’m conscious, upright, and keeping my pot pie down. (Something, something, small victories.)

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  1. Catherine Devlin January 31, 2015 at 10:19 pm

    Thank you for speaking honestly about this. I think you help show people that the world doesn’t simply separate out into “people who are just fine” (or desperately pretend that they are because they think we’re supposed to sound positive) and “sick and helpless people”.

    1. Kristy February 1, 2015 at 9:51 am

      I appreciate that. I usually fall into the “pretend I’m fine” trap because I don’t want to make other people uncomfortable.

  2. FaithfulDoubt January 31, 2015 at 7:58 pm

    This all sounds really, really horrible. I’m so sorry that you have to go through this pain.

    1. Kristy February 1, 2015 at 9:49 am

      Thank you. Some people with EDS only have days like these. At least I get breaks from the headaches.


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