*Originally published 5/29/18*
I wrote this on Memorial Day while stuck in bed:
For the first time in a long time, I’m about to sleep through a family party. I’ve been trying to rally, but the fatigue is too strong today. It’s crazy because 4 days ago, I woke up at 7 watched a 16 months old all day, then exercised for over and hour and cooked dinner with energy to spare. But today, today the only thing I’ve done is vacuumed my kitchen and picked up lunch for everyone and I’m so tired you’d think I just ran a marathon. This is what Lyme disease is.
I’m going to try and explain to you in a symbolic way what life with Lyme disease is like.
You know how when you play some video games you are given a certain amount of lives? And when you do things like run, fight or whatever they diminish? That’s what having Lyme disease is except instead of running and fighting you're doing everyday tasks like showering, eating and walking around your house. When the lives run out, you crash, and unlike the video game, it can take days or even weeks to fully regain your “lives” back. That's why we Lymies have to map out our days so we don’t waste all of our lives at once. When I know I have something big coming up, I try to save my energy (lives) so I can use it for the big event. This gets really tiring. You constantly cannot give 100% of yourself to certain tasks just so you can get through the others. Imagine that.
Lyme disease is also like having a really good dream, only to wake up and find out it’s not real. What I mean is that some days you’ll be feeling amazing. You’ll exercise and hang out with friends, then suddenly, everything comes crashing down around you. Just when you start to forget that you’re chronically sick, your disease comes out full force to remind you. When you have Lyme disease, somedays it feels like you’re floating through clouds, while others feel like you’re buried in cement. On days when the brain fog is really bad, you just kind of float through life. You go through the motions of everyday living-brushing your teeth, eating food- but you don’t recall doing them or even realize you are doing them. It’s like our own version of dazed and confused but pretty much 24/7. On days when the fatigue is super strong, just moving your head off your pillow can be such a strenuous task that you feel like you’ve just lifted an entire building.
The worst thing about all of this is that it can change at anytime. One minute brushing your teeth could only use a fraction of your “lives”and the next it could take all of it. One minute you may be able to exercise and feel great and the good dream continues, until you start to shake and get paralyzed and reality sets in. One minute you can be able to memorize an entire paper, and the next you can’t remember if you just washed your hair while in the shower. One minute you can be able to run and workout with ease, and the next you physically can’t even hold your phone because it is too heavy. Or like what happened today, one minute you will be enjoying a party, and the next you’ll be huddled in bed, paralyzed and exhausted.
Lyme disease is unpredictable. Lyme disease is smart. Just when you think you’ve figured it out, it throws you a curveball, and then a few more right behind it. I used to say I live my life day to day, but with Lyme disease, it’s literally minute to minute that things can change.
Understanding this has been one of the hardest parts of these past 6 years. I’ve had to change my entire mindset and the mindsets of those around me. To see me running around being silly one minute, then to see me bed ridden, unable to move the next minute (literally), is hard to grasp. With Lyme disease (and other chronic diseases) you don’t get it until you get it. We don’t expect others to understand our pain or struggles. We just expect them to believe us.
I hope these analogies can help you see a glimpse into our lives and better understand that we are trying our best to live through this magnificently awful disease.
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