The System I Developed to Explain the Ever-Changing Severity of My Symptoms
It is true for most, if not all of us with chronic illnesses and mental health conditions, that the severity of our symptoms vary day to day. Perhaps medication starts or stops working and changes, a trigger is in play, the illness is progressing or there’s just no reason whatsoever.
Occasionally, we have the luxury of knowing how we’ll feel the next day. I can look at the weather forecast and take a good guess. Planning a little further ahead is more difficult. I have no clue what my symptoms are going to be next Thursday.
This “moving target” means it’s hard to make plans and to keep plans. It’s hard to establish expectations because the expectations can’t be constant. It furthers the strain already placed on our relationships at work, school, home and the dating scene. It also makes the coveted concept of “routine” a myth in our lives.
The Splat System can’t fix all this, but I discovered it can make it a heck of a lot better.
When I first came up with Splat, it didn’t have a name. It was just something I used in its most basic way. I was working for a small company as an advertisement copywriter. It was a nice gig, and I learned a lot that helped me go on and build my business, but just this simple corporate job was hard. With my fibromyalgia and arthritis, I had a totally unique and definitely more difficult experience doing my daily tasks in my cubicle corner. Sitting is painful. Standing is fatiguing. (I’m lounging on my chaise in my studio as I write this.) Sometimes when I was in a bad flare, I stuttered. It was embarrassing on conference calls, and one time a coworker asked me if I was the r-word when I couldn’t get words to follow each other as I explained an ad concept. And I always felt like no one understood or appreciated how difficult everything could be for me, how hard I had to work sometimes, how evil it was to always have donuts and cake in the break room.
I don’t mean to make my company look cruel or insensitive (except perhaps that coworker who called me the r-word). It’s not their fault. It’s a global problem in our workplaces that there’s such a disparaging lack of awareness.
During my time at that company, one of my greatest coping mechanisms was to have my “people.” I would often sneak away from my desk and visit the way cooler den of the graphic designers — three men, with hidden disabilities existing among them as well. We exchanged obscene jokes. We gossiped. We talked about a plethora of nerd stuff. But the greatest way they served my joy and peace at this job was that we talked about my chronic conditions and how they affected me day to day. I could have someone know, and that meant the world to me.
However (and this may happen to you) once I got comfortable communicating about my illness, I got tired of hearing myself talk about it. It was just so terribly gloomy. I was listing symptoms, and there was always something every day.
So one day I walked in and declared this:
Every single day I feel like I’ve been run over by something. That’s just a given, and that’s how it’ll be forever. But it’s by a different vehicle on different days.
From then on, I no longer walked in and told them how tired I was, how foggy my brain was or how much my hands hurt. I could simply say, “moped,” or “pickup truck,” or “freight train.” And they got it.
It was awesome!
I could be straight-forward, light-hearted and non-whiney — and I want to share my system with you. Here are my Splat vehicles and what they mean, from lightest to heaviest.
1. Moped: My symptoms are always there, but today they’re pretty chill!
2. Eurocar: My symptoms are holding me back a little, but I can do more today than usual.
3. Sedan: Just a standard day with this illness. I definitely don’t feel well, but I’m functioning.
4. Pickup truck: I can almost get by like a “normal” person today, but everything is a huge struggle and I want my mommy.
5. Tractor trailer: Everything mean they ever said about this disease is true. I feel absolutely awful. If it’s critically important, I’ll do it. The rest of life will have to wait.
6. Freight train: All of my symptoms are at their worst. I’m totally miserable, and I couldn’t keep my “invisible” illness invisible if I tried. If you need me, I’ll be in my bed, and, well, just don’t need me.
7. Asteroid: Zombies are more alive than I am.
There are tons of ways to use this, besides chatting with the coworkers you share fart jokes with. One great way is to use Splat to make plans (instead of avoiding commitments because you’re afraid of canceling!). For example, I recently planned a girls’ day with a friend. We chose a date in the future and agreed that if my “Splatus” that day is moped, Eurocar or sedan, we’ll go thrift store shopping then grab dinner. If it’s pickup truck or tractor trailer, we’ll get takeout and do a movie night. If I am at freight train or asteroid, we’ve got to limit it to one movie and soup and we’ll be piling on my bed.
Check out the “Impact Map” on my website to see more ways to use Splat to keep a routine and alleviate that guilt we feel too often because of our conditions.
And may you have a plethora of moped days!
MORE ABOUT FIBROMYALGIA:
Fibromyalgia, a chronic illness with three main symptoms — widespread pain, chronic fatigue and cognitive trouble. Fibromyalgia is a complicated illness that’s not well understood. In the past, it was mischaracterized as a mental health disorder. Even today, some doctors wave off fibro symptoms as being “all in your head.” This isn’t the case. Read The Mighty’s comprehensive guide to fibromyalgia here. Click here to join our fibro community and connect with people who get it.
All images provided by Christina Irene