Daily Life as a Zebra

What does daily life look like for your Zebra character? To be honest, that's pretty hard to answer. hEDS symptoms vary widely by internal and external factors and, of course, by person. As such, there isn't really a "normal" baseline to draw from. 

My goal for this post is to lay out a little of the groundwork on what may influence their daily symptoms, and three levels of daily functionality, all written in very broad strokes, to be easily adaptable. Again, this isn't as easy as "picking and choosing" which level you think your character fits into best, but rather what level they are likely to function at for the day. (Also, please keep my regular hEDS disclaimer in mind as we go through this.)

A quick note before we start. Most people with EDS have a wide variety of comorbid conditions, which can hugely affect their daily symptoms. Positional Orthostatic Tachycardia Syndrome (POTS) and Mast Cell Activation Syndrome (MCAS) are two of the most common, but there are countless others. As always, I'd recommend looking into comorbid conditions and considering which ones your character may have. 

In this post, I will be touching lightly on POTS because of how common it is among Zebras, and because I also have it, but keep in mind that there are almost always countless other factors in play on top of EDS. (And yes, I have a multitude of other comorbids as well, but it would take far too much space to go through that list in this post.)

Now, onto the post!

Variable 1. The weather. 

The weather can play a HUGE part in daily pain levels. Wintry cold leaves an ache in the bones that's hard to shake, and many hEDSers (especially those with POTS) struggle with heat intolerance in the summer, leaving us exhausted and dizzy. Spring and autumn, with their milder temperatures, can be easier on the body, but any sort of drastic changes in weather conditions (rain, storms, blizzards, etc...) can wreak painful havoc on arthritic joints, which many of us have, even as children!

Variable 2. Health. 

I feel like this one should be obvious, but being under the weather (see what I did there?) can sap energy, leaving a normal person feeling achy and low. Take that times ten or so, and you'll have some idea of what even a mild bug can do to a Zebra, and yes, being sick can also wreak havoc with POTS. As far as daily health, a LOT of Zebras struggle with insomnia, which can also exacerbate symptoms.

Variable 3. Yesterday.
Did your Zebra character have a particularly long or physically challenging day yesterday? Anyone's energy reserves can run down with an exhausting week, but with a Zebra, that is normally more pronounced. Aches and pains can be exacerbated by a lack of rest, and our fatigue is often hard to shake, even with proper rest.

Variable 4. ???
Yeah, helpful, I know. But that's kind of the point. Sometimes we just have more energy, and our pain levels are lower for no real reason. Sometimes we can hardly get out of bed, also for no reason. One day we might have no dislocations or subluxes, and the next we might have several. I don't know why this happens either. It's just life with hEDS.

Now that you've read through all of that, how about we get onto the post I promised you?

Low pain days.

For a lot of us, these are fairly rare, but they do happen sometimes. 

On a low pain/symptom day, your character might be able to function just about the same as your other characters. They will likely struggle with some slight pain, and joint laxity, but this could be quite minimal. They may struggle to stand up without using their hands for support, and may have knees that click loudly when they walk. They will probably still have some splints/braces/wraps/compression clothing with them, and if your character has POTS they will probably still want to consume a lot of salt and water/electrolytes. But, all in all, this should be the easiest to write.

Keep in mind: they don't stop having hEDS, POTS or any of their comorbids on these days, so they'll still want to be aware of their physical limits. Also, they might be a little wary of their bodies on these days; there's something inherently untrustworthy about your body randomly deciding to work better than normal.

Moderate pain days. ("Normal" for many of us.)

On a moderate pain/symptom day, your character could experience symptom flare-ups a few times throughout the day, with subluxes, accidental joint hyperextensions (which can hurt or be painless,) joint "pops" (imagine a bubble of pressure building under your joint, before "popping" sometimes it's a relief, sometimes it hurts quite badly,) or POTS flares. They may also struggle to walk long distances without mobility aids (though not all Zebras have that problem.) They will likely struggle with fatigue and may not have slept well. They could also be struggling with anxiety, which is desperately common among Zebras.

Most likely, they will be in some pain (likely centered around their joints) for most if not all of the day... even when they're not actively dealing with subluxes and flare-ups. But they will be able to function at this level. They may compensate for daily symptoms with heat pads, ice pads, braces, compression garments, or mobility aids. They might avoid active triggers (such as heat or extreme physical exertion,) but they probably won't be sidelined by this level of pain. 

Keep in mind: "normal" is an oversimplified concept with chronic pain. Your character can be in a LOT of pain, but still functioning at a "normal" level. This doesn't mean they aren't in pain; it just means the world doesn't stop every time they are hurting. They might show signs of pain (such as limping, or cringing at a particularly painful subluxation) or complain about being in pain, or they might not. Either way, they are still valid, and they are still Zebras.

High pain days.

High pain/symptom days are exactly what they sound like. Even walking to the bathroom might be a big ask of your character on these days. And your character may also be feeling particularly low, anxious, or depressed.

Writing this from the outside-in would likely involve a lot of heat pads, ice packs, pain meds, and comfort items, as they simply try to survive. They might fall asleep from sheer exhaustion, or they might not be able to sleep because of pain. If they are at their absolute limit, you'll want to know that there's a level of pain so high that both moving, and sitting still are unbearable, leaving you fidgeting painfully as you struggle to find the one position that you can breathe easier in. The pain might even make it hard for them to think clearly, and they may blank out a lot of the day by the next morning. It's higly possible that they may struggle to articulate, or localize their pain in this state. It's just as horrible as it sounds.

Writing it from the inside-out? I honestly wouldn't recommend doing that unless you have hEDS yourself (or at the very least, a co-author with EDS.) 

Keep in mind: Some days it's hard to simply be alive. This level represents some of those days. Even the toughest, most non-demonstrative character may have problems hiding the pain on these days, and that's okay. Pain isn't weakness, it's just part of the territory. And feeling like you've been mauled by a bear is hard on anyone.