It seems there’s no end to the dangers one may encounter as a zebra, and no matter how hard I work to achieve better health, joint stability and overall wellness, there are always going to be things the average healthy population takes for granted that I and other zebras will never be able to do. I don’t know if there’s a manual of do’s and don’ts for Ehlers-Danlos Syndrome out there that covers this one, but I would highly recommend avoiding sitting on the ground for any length of time.
Yesterday was a beautiful Saturday in Northern Kentucky. I spent the morning swimming and sunbathing with my husband at the community pool. We were enjoying ourselves so much, we even ate our lunch there. It was gorgeous. Around 2pm, we realized we were starting to look a bit red and headed home.
While thumbing through facebook waiting for the hot water heater to replenish itself after my husband’s shower, I came along an ad for an outdoor concert near us in the evening. A band we haven’t seen for several years was playing at a carnival. Since my sound sensitivity seems to be at a 3 year low and I can handle a couple hours on my feet now, I thought it was a good chance to test it out. We agreed it might be a good time, so we decided to go.
By the time we got there, we both resembled oompa loompas, but I was careful to drink extra ORS and keep chugging water all night. We walked around the carnival for about 45 minutes and wandered over to the bandstand when the band started playing. As you may or may not know, Northern Kentucky is un the foothills of the Appalachians, so truly flat ground is a bit of a rarity, even in yards and on festival grounds and the like. Most of the flat, standing room was already taken and I knew if I stood on a graded spot I was going to have serious issues, but there was a hill eith a bunch of foljs sitting, so we joined them, thinking it would work well for me.
I did my best not to remain in one position for too long (nor could I have) and felt fine for the first hour. On trying to rise after 90 minutes, however it became pretty clear what a mistake I’d made. NOTHING worked right from my hips down. My left leg refused to move as anything but one big chunk, my right hip threatened to give out with each step, and as I trudged to the car looking like a big red Bride of Frankenstein, my chest began to seize up like I was having a heart atrack. At first I thought it was costocondritis, but it abruptly switched to the other side of my sternum, so I don’t really know what it was unkess it happened on both sides at once. Muscle spasms? Heart burn? Who knows. It wasn’t my heart. I know what that feels like, but it was making it hard to breathe.
By the time I arrived home 15 minutes later, I could barely get myself up the half dozen stairs to the apartment. Suddenly, every time I moved, I pulled or subluxed something and my entire spine hurt so bad, I could feel each individual disc as I moved. By the time I went to bed two hours later, despite the muscle relaxers, mmj, anti-inflammatories and stinging nettle tea I took, literally every joint and muscle in my entire body was on fire. Every movement was an exercise in torture and it remained that way until 11am the next morning, 12 hours later. Even now, at 2pm, I’m still in bed just trying to spare myself any added pain or reinjury to everything I subluxed over the last 12 hours. My head feels like it’s been stuffed uncomfortably full with cotton and my light sensitivity has reared its ugly head. My whole body feels stiff, achy and uncooperative.
I guess it’s difficult to say if the music was at all a problem when I so thoroughly wrecked my body in the process of finding out 😂 It’s true what they say though. Often you have no idea of the damage you’re doing in the moment, because for the first 75 of the 90 minutes I was on the ground I had no inkling of the repercussions I was about to suffer. Sure, I had to readjust my position a lot, but I have to do that in my own recliner or the movie theater chairs or a restaurant and I don’t come out of any of those situations walking like the Bride of Frankenstein, at least not on a good day, and certainly not in recent months.
The good thing is that since I’ve mostly learned how to manage my condition, I should be back in action in no time, which is a very good thing since deterioration sets in in no time and it’s a real bitch dealing with major setbacks. I know one thing for certain; if I ever plan on attending another outdoor concert, I’m bringing a chair! 😂
In retrospect, I don’t know why this surprised me. I’ve never been comfortable sitting on a floor or the ground with or without back support and after years and years of accumulated damage, of course the ramifications are going to get worse. I suppose there’s always been some degree of payback for it, from a grumpy back or genersl soreness to a popping knee or ankle, which took me a long time to understand as small, quick subluxations that sometimes go right back into place and other times need some manipulation to get back in. They didn’t hurt when I was young, but they do now, by and large. Jams are also an issue more and more for me, especially in my ankle joints.
I do wonder if I might have been somewhat dehydrated from my burn and if this contributed to the severity of the payback I experienced, one of tge reasons I mentioned it (not to mention the comedic value…we need to laugh at ourselves sometimes), but I tend to think the accumulation of injuries and the state of my collagen played the greatest role.