Slayer of Dragons, Mast Cells & Ehlers-Danlos Syndromes


 
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When you are chronically Ill

You need to have other outlets too... 

 

You're playing World of Warcraft one day, and suddenly a mount drops. Naturally, you'll roll need on it. Except you lose that roll by about 5, and that wasn't a mount at all. It was a reasonable gene pool. And now, you've got permanent debuffs.

What does all this lingo mean? One, that I've probably spent a little too many years on the PC, and two, that my list of medical conditions is akin to the pepe silvia episode of It's Always Sunny. To name a few, I have Ehlers-Danlos Syndrome, Postural Orthostatic Tachycardia, Adrenal Insufficiency, and Mast Cell Activation Disorder. I won't spend a lot of time going into detail with these, (I get nasty symptoms in every part of my body, these examples are just the tip of the tip of the iceberg) but the general idea is that I could dislocate every bone in my body and pop it back in place, stand up really fast and pass out, dehydrate completely or have allergic reactions to water, sunlight, and most pharmaceuticals. Not to mention the FOOD. I'd rather just ditch food for soylent green now to be honest.

Those things weren't actually hypothetical and did actually happen. Except for the soylent green part.

But, if you thought a reconstructable version of Humpty Dumpty isn't going to do shit like wear suits of armour and beat up grown men with foam and pvc weapons, you thought wrong. It's actually one of my favourite things to do, even though I pay for it later.

When you're chronically ill, you need to have other outlets too - ones that you can use on the days you can't seem to remove yourself from the toilet. Or, maybe you're too tired for any level of social interaction beyond mauling a keyboard. That’s where the art comes in, and also the video games. So when I'm not up to doing something epic in real life, I can just draw it. Or draw how shitty I'm feeling. In all seriousness, art has become one of my most important outlets, and has allowed me to share my experiences and just get them out. Video games on the other hand, are a distraction. But they're an immersive, fun, (and sometimes mindless) distraction, and I love them for it.

So, day-to-day life, yeah, it's pretty difficult. It's a very delicate balance from when I wake up, to when I go to sleep, and everywhere in between. As in going from pumped up to pumped up with saline in an ambulance within a few minutes. It's a constant, daily battle - but I know it's always worth fighting. I fight it for the support I have, and the hope I have for a better future. And even if my health doesn't change, or gets worse, I'll still be glad for it. It's a challenge...this has made me who I am, and I wouldn't have it any other way.

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