Another personal story post for you, related to my ongoing journey with the health-related mess. I'm aware that some people want only to be engaged with the PB Project's more neutral features, without personal details, and that is perfectly okay with me! Hence the warning. If you want to continue, you're very much my guest.Be it somewhere, either here on the PB Blog, the PB Community Facebook Page, or closer to my personal, online spaces, there are times when I share things that get me anxious as I write, almost nauseate me to post, and then torture my nerves to leave up there, related to things that are personal to me. Not personal as in breaking the privacy of other people - which is my utmost concern and I try to do whatever I can to avoid that - but the kind of personal that opens my delicate rules of vulnerability or that reveal things that I was taught were inappropriate, mostly related to medical or other, related things. Sometimes I get so scared I end up taking them down, partly because I grew up with a mother branded among other things a hypochondriac behind her back when it came to me, and so I think others might have the same disrespect for me if I share this journey of mine, myself. But I also have very delicate, often proper, personal feelings about some things, as we all do, and can be embarrassed if not handled properly.
My parents weren't particularly formal people to say the least, but they taught me a rather strict view of what one discusses and what one keeps from the world. I was always taught, for instance, to use the formal, even professional terms for medical things some people don't even know, much less use, which in addition to a fairly formal vocabulary and grammar style gained from other facets of my upbringing, has earned me since I was a child the reputation of being much older (and stuffier) than I am, and online especially. As I've gotten older, some of those personal rules have become so antiquated in my local culture that I've even been teased for holding to them. It hasn't stopped people for coming to me in search of answers for various things they couldn't ask anyone else they knew, but I still get to be the topic of amusement, now and again. Which isn't a bad thing, as long as we all know it's in love and respect rather than mockery and derision.
Part of my struggle in this health journey has been to find a balance between sharing the truth as a means of helping people be aware of what I've learned, so that perhaps more can come together in the common goal of providing the means of research and understanding that could help the future; and not being overwhelming nor annoying. Some people just don't want to know, and some want to know all they can, while others really just don't care. Being the empath and peacemaker I am, it matters to me to at least attempt a balance, somewhere in the average.
So that is why I end up considering apologies like one aimed at those who were subjected to a description of what this coming week is likely going to be like for me, physically, as I must withdraw from several of my meds, mostly pain and some function-related meds, in preparation for a special test geared toward gauging and better understanding the length and depth of my autonomic ("automatic") nervous system dysfunction, or dysautonomia. I have several types of symptoms of dysautonomia, and so getting a better idea of how it affects things in various ways is the goal of the test. I don't know much more than that, actually.
I do know what it's like to have even one of those medications dropped for a few days, much less a week, and I decided to set aside my caution and explain it in clear terms, using examples people could understand and relate. There is no way to properly describe it without that sort of thing, because it's more difficult to experience than most people could ever, even imagine if they haven't experienced it, themselves. And there are many, many who experience it every day, not being able to even have the medical support I've had. I can't take most regular pain medication, so my doctors have had to get creative, and that means that means my situation is more complex than it would even be, otherwise. But to remove what little relief I've had has me, well, scared.
I hesitate to even describe it, here, but to be fair to those I might represent which I'll explain in a bit, I'll summarize. Basically I typically live in "4-6" out of 10 on the traditional pain scale, where most of the time medical treatment aims for under 3. For me, at a 7, I feel like I'm coming down with the flu along with every nerve ending burning, inside and out. I've described removing one of those meds as, "filling me with acid, setting me on fire, and then scraping sandpaper across my entire body while I have a high fever." Even the still air of a closed room can feel like burning sandpaper, never mind my clothing hair, bedding, and anything else that touches me. My description the other night was a bit more detailed, but that's the gist and I kinda wish I'd left it at that. I hadn't even considered all the injuries I've been collecting, such as in my feet, hips, shoulder, hand, and thumb.
The response was difficult and a bit embarrassing to me, and I've been sitting here, debating an apology that started like this:
My apologies if my previous description the other night of what I'm facing this week in prep for the autonomic testing was overwhelming or excessively bothersome for some people.
I do preface those kinds of posts with the short warning that I'm about to post something for those who want to be let in on the journey, for that reason. I try my best to not post things that are particularly triggering without some kind of warning, and I don't post things such as pictures of injuries or what-have-you, because those kinds of things can be triggering for my own, overgrown empathy on my newsfeed, and I don't like to do that to others.
On the other hand, having given those warnings, if it is extremely bothersome to know what's going on, you have some choices, such as to not read the post (which is the point). But know that I try to err on the side of not sharing everything, even with what I share, so at least there's that: you're not getting the gritty blow-by-blow. I think that post was the most descriptive I've been about my personal experience with this mess, other than the general story line, of which I still leave a fair bit out.
I guess it's just that since I've been hit by this time bomb ticking that came out of nowhere, and pretty much no one who doesn't have someone who has it in their life knows anything about it nor its corresponding issues, the only way I can begin to face the inevitable is to help others who suffer in silence to know that they don't have to, even if our stories are not the same. There are few things as lonely as feeling like a freak in a world where the main goal seems to be blending in and being "normal" or "typical" in every way, and not understood, especially because it makes other people uncomfortable so they avoid it. And that goes for anything physical, mental, emotional, financial, social... pretty much anything, and you know that nearly none of us feels like we truly blend in in all the ways we wish we could. I just want someone to feel like they don't have to be alone, just like I want to feel. And if that means that I have to open myself up in uncomfortable ways, I'm willing to do it, because honestly, my medical journey is not the entire journey, just as it isn't for anyone else - it's just one piece of the madness.
There is no happy medium when it comes to suffering. There is no, particularly easy way to face a life ending in unpredictable agony. There is no way to face anything so extreme and yet unknown in a fully graceful way, when we're stumbling in the dark over huge and unexpected hurdles. That is why it's so important that people be willing to learn, share, and help others do the same, even if it hurts or is embarrassing. From what I've learned, much of the progress for rare disease research such as for Ehlers-Danlos Syndrome has been budded from research aimed toward the "cures" for more well-known illnesses, no doubt much in part to the fact that people are more willing to pay for research into things they know, or they've witnessed, and that is the nature of the rare: few see us, because we're not visible, everywhere.
And that is equally true for treatments: I've been refused more treatments by my insurance than I've been granted (yes, but I'm not discussing the American insurance system's issues at the moment), because as a rare condition, there is no policy allowing for things few know exist, like my related need for special braces for my fingers so I can use my hands beyond very simple, light things that don't include actually having to grasp, push, nor pull something; and symptoms of Mast Cell Activation Syndrome, which my geneticist recognizes but I can't have formally diagnosed nor treated because it isn't specifically delineated in the handbook, so they can deny it. Shall I go on? Nah; you likely get the point.
Meanwhile, I started easing off just one of the meds today; one I take three, 3 times per day, and so I only take 2 each time, instead. I started it when I started my med routine for the day, and 4 hours in I've started to hurt. While I don't really believe in luck...wish me luck, hmm? And send some love to someone you know who suffers a chronic illness, even if you don't believe they're being honest about it - because let's face it, it's far, more common than people would like to admit, and love trumps truth when it comes to pain, I think.
Better days ahead, my friends!
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