New Blog Name: Or To Live with hEDs is to Be An Extremophile.
No, I don't literally survive and thrive in alkaline, acidic, frozen, or extremely hot environments. According to Britannica's online and free encyclopedia, though, extremophiles are tolerant to and find ways to thrive within extreme environments. This I have to do. This is survival for me!
I bring that up, because my own body does create tension with this perspective. My own hypermobile Ehlers Danlos (hEDs) body is, in itself, an extreme and often hostile environment to live within. If you see me out somewhere, this reality will not generally be visible.
As I've been writing this blog I have gone back and forth about whether or how much to share about some of the physical experiences I have, but feel like it is important to share some of what it can be like on a regular day. How much I can do and "push through" definitely varies. Some days my other symptoms will be less, but my fatigue will be more, or vice versa. Maybe I will write a part two of this blog in which I detail more clearly some of the difficult systems and external environments I have lived in, and maybe a third on some of the most compassionate and supportive environments I've been in.
Anyway, how a typical day for me generally begins far before I wake up in the morning (if I ever got to sleep). Sleep is a huge factor in what kind of a day that I have, but some of the autonomic, digestive, nutritional and pain issues associated with hEDs make sleep often very hard to come by. On a usual day I've had less sleep than I would prefer or need, but enough to manage.
I've had pain every day since I was a child. Like many hEDs kids, I went to the doctor with hEDs related shin, bone, and joint pains that were dismissed as "growing pains." Since a difficult surgery when I was 18, I've had constant low-level pain in my muscles, skin, and joints (maybe about a four usually). That is every day. Some days it is better and some days it is worse. It is there when I wake up.It is there throughout the day. It is there when I sleep (or lie down wide awake as the case may be).
It is often interesting to discover how many new bruises I got overnight. Yes, folks. surrounded by a pile of blankets, a soft but firm mattress, and a bunch of fluffy pillows, I can still find new mystery bruises nearly every day.
Because our Zebra bodies have faulty connective tissue (EDs folks, due to the common phrase doctors say that is oh-so-wrong that "when you hear hoofbeats, think horses, not zebras, often choose to call ourselves Zebras, if you're wondering about that reference) we can all or partially dislocate joints. Just walking down the hall. Or slightly stretching. Or sitting quietly doing nothing. This can happen numerous times in a day, depending. Sometimes they hurt, and sometimes they don't (depending on your hypermobile range), state of the nerves surrounding the joint, whether the moon is in the seventh house, or you breathed wrong on Sunday (hoping all readers heard the irony there).
By and large, I tend to subscribe to the Social Model of Disability, the idea that it is not someone's physical, bodily, cognitive, or emotional condition that disables, rather, it is the way we build our social, physical, as well as cultural worlds and systems to be exclusionary to Disabled folks. Though I also believe it is important to engage with all of these through a critical theory lens that examines the flow and use of power where Disabled folks are concerned.
I bring that up, because my own body does create tension with this perspective. My own hypermobile Ehlers Danlos (hEDs) body is, in itself, an extreme and often hostile environment to live within. If you see me out somewhere, this reality will not generally be visible.
As I've been writing this blog I have gone back and forth about whether or how much to share about some of the physical experiences I have, but feel like it is important to share some of what it can be like on a regular day. How much I can do and "push through" definitely varies. Some days my other symptoms will be less, but my fatigue will be more, or vice versa. Maybe I will write a part two of this blog in which I detail more clearly some of the difficult systems and external environments I have lived in, and maybe a third on some of the most compassionate and supportive environments I've been in.
Anyway, how a typical day for me generally begins far before I wake up in the morning (if I ever got to sleep). Sleep is a huge factor in what kind of a day that I have, but some of the autonomic, digestive, nutritional and pain issues associated with hEDs make sleep often very hard to come by. On a usual day I've had less sleep than I would prefer or need, but enough to manage.
I've had pain every day since I was a child. Like many hEDs kids, I went to the doctor with hEDs related shin, bone, and joint pains that were dismissed as "growing pains." Since a difficult surgery when I was 18, I've had constant low-level pain in my muscles, skin, and joints (maybe about a four usually). That is every day. Some days it is better and some days it is worse. It is there when I wake up.It is there throughout the day. It is there when I sleep (or lie down wide awake as the case may be).
It is often interesting to discover how many new bruises I got overnight. Yes, folks. surrounded by a pile of blankets, a soft but firm mattress, and a bunch of fluffy pillows, I can still find new mystery bruises nearly every day.
Because our Zebra bodies have faulty connective tissue (EDs folks, due to the common phrase doctors say that is oh-so-wrong that "when you hear hoofbeats, think horses, not zebras, often choose to call ourselves Zebras, if you're wondering about that reference) we can all or partially dislocate joints. Just walking down the hall. Or slightly stretching. Or sitting quietly doing nothing. This can happen numerous times in a day, depending. Sometimes they hurt, and sometimes they don't (depending on your hypermobile range), state of the nerves surrounding the joint, whether the moon is in the seventh house, or you breathed wrong on Sunday (hoping all readers heard the irony there).
Also we are very prone to hurting ourselves by bumping into things. This usually happens multiple times a day for me (occasionally I've gotten dislocations from this and that really sucks!). Because every time our joints hyperextend, it damages the proprioceptive nerves that surround the joint. What that means, essentially, is that the nerves responsible for knowing where your body is in space relative to other objects within that space get damaged and can't do that task as well. Like I said, this is usually several times a day of smacking an elbow, knee, or wrist or other part into something unintentionally.
And then, one must eat breakfast.
Often I don't wake up with energy in the tank. Sometimes, if I am lucky, as I move around and get going, I might get a little. But often I don't. You see, because our connective tissue doesn't do the job of holding everything in place, like it should, our muscles have to compensate. I've read figures that suggest that our muscles have to work anywhere from two to five times harder than other peoples for everything that we do. Fatigue is pronounced on a day-to-day basis. Pain also. I'm sitting here right now typing this with a heating pad behind my sore back and an ice-pack switching between my head and my shoulder.
Then, there is the issue of worse injuries or scares that can totally disrupt your day, lead to unnecessary or necessary but unfruitful trips to the ER. Often these can be pretty scary, like the time I felt waves of pain almost feeling like it was flowing like a liquid up and down my spine and the back of my neck when I stood up or bent over, turned out also my blood pressure which is usually totally normal was sky high.
And if you are still reading at this point and thinking to yourself that I sound like a hypochondriac, first check your ableism. Women are often not believed at doctors offices, not around their pain or their symptoms, and thus face massive delays in getting diagnoses, particularly when those conditions are less well known. Second, because of the systemic nature of hEDs, displaying pain and symptoms over a wide range of bodily systems, doctors often dismiss us (and family and friends too sometimes), as hypochondriacs who are too worried about our bodies. If you feel that way, I just dare you to spend a few days in my body, you'd be worried too sometimes. Though you'd also get to be quite an expert in your own body and what is normal for you and what is abnormal (oh would, oh would that more doctors and especially ER doctors who may not know and work with you to know that, would understand that last point!). Also, if you're still not convinced, the geneticist who diagnosed me would beg to disagree with you.
Though there would be more to describe, from Reynaud's to MCAS, and dysautonomia, all associated manifestations of hEDs, I feel like I've got into as much detail as I feel comfortable going into. And I only am going into it for educational purposes. So that people can see how much can be going on for someone, that doesn't show any external visible signs and markers, that a person might, in fact, have such practice navigating this type of body and experience from the time they were small, that where a typical person without such a disability might facing this onslaught be left prostrate on their beds, a person used to navigating this might be doing errands, might be at meetings, working, and appear "just fine" even though they're so so so not.
And then, one must eat breakfast.
So many of us with hEDs, and they (and by they, of course, I mean doctors and researchers) haven't yet figured out the mechanism for this yet, also have IBS issues. I won't go into much detail on this, you are welcome to look up IBS if you so desire. Though I will say, to give you a flavor, that every morning I experience something that my gastroenterologist recently told me was called, "rapid gastric emptying." Yes, reader, it is as nasty, awful, and many times painful as it sounds. Depending on the day, I may have digestive problems many times during the day. Its not every day, but its not uncommon either.
Ocne that is past, I have a range of medications that I have to take to treat everything from my malabsorption, to my pain and ADHD (oddly enough, there's another association between hEDs, ADHD, annxiety--which I also have--and depression, which I don't).
Ocne that is past, I have a range of medications that I have to take to treat everything from my malabsorption, to my pain and ADHD (oddly enough, there's another association between hEDs, ADHD, annxiety--which I also have--and depression, which I don't).
Often I don't wake up with energy in the tank. Sometimes, if I am lucky, as I move around and get going, I might get a little. But often I don't. You see, because our connective tissue doesn't do the job of holding everything in place, like it should, our muscles have to compensate. I've read figures that suggest that our muscles have to work anywhere from two to five times harder than other peoples for everything that we do. Fatigue is pronounced on a day-to-day basis. Pain also. I'm sitting here right now typing this with a heating pad behind my sore back and an ice-pack switching between my head and my shoulder.
Then, there is the issue of worse injuries or scares that can totally disrupt your day, lead to unnecessary or necessary but unfruitful trips to the ER. Often these can be pretty scary, like the time I felt waves of pain almost feeling like it was flowing like a liquid up and down my spine and the back of my neck when I stood up or bent over, turned out also my blood pressure which is usually totally normal was sky high.
Case in point, the good news is that I wasn't having a stroke and I knew that because I literally was having no symptoms of having a stroke.Bad news, the ER, instead of checking things related to my back and spine (my concern), they tested for what I knew I didn't have. And lo and behold. I didn't have it to the tune of a several thousand dollar ER bill. So, though these aren't as regular as the other things I've been describing, these do happen, and can impact my day. Particularly if I'm in between being able to speak with my own much more hEDs aware doctor, who can usually point me in the right direction and not getting my medical needs addressed. It does cause worry that some irreparable damage may be being done.
And if you are still reading at this point and thinking to yourself that I sound like a hypochondriac, first check your ableism. Women are often not believed at doctors offices, not around their pain or their symptoms, and thus face massive delays in getting diagnoses, particularly when those conditions are less well known. Second, because of the systemic nature of hEDs, displaying pain and symptoms over a wide range of bodily systems, doctors often dismiss us (and family and friends too sometimes), as hypochondriacs who are too worried about our bodies. If you feel that way, I just dare you to spend a few days in my body, you'd be worried too sometimes. Though you'd also get to be quite an expert in your own body and what is normal for you and what is abnormal (oh would, oh would that more doctors and especially ER doctors who may not know and work with you to know that, would understand that last point!). Also, if you're still not convinced, the geneticist who diagnosed me would beg to disagree with you.
Though there would be more to describe, from Reynaud's to MCAS, and dysautonomia, all associated manifestations of hEDs, I feel like I've got into as much detail as I feel comfortable going into. And I only am going into it for educational purposes. So that people can see how much can be going on for someone, that doesn't show any external visible signs and markers, that a person might, in fact, have such practice navigating this type of body and experience from the time they were small, that where a typical person without such a disability might facing this onslaught be left prostrate on their beds, a person used to navigating this might be doing errands, might be at meetings, working, and appear "just fine" even though they're so so so not.
You know, it's funny, I used to judge myself so harshly for sometimes being really awkward sometimes, but given what is going on with my body during the best of days, I've come to realize that it isn't fair to judge myself in relation to people who don't have all of these challenges. That I can bring my awkward self to my friendships, to my future social work, and my crisis counseling and its okay.
Okay, you might think as a reader, you've convinced me that your body might be kind of a harsh "planet" to live within, but you said that the definition of an extremophile was to be able to thrive in these harsh conditions. Where is the thriving? And you'd be right, let me get to that.
Okay, you might think as a reader, you've convinced me that your body might be kind of a harsh "planet" to live within, but you said that the definition of an extremophile was to be able to thrive in these harsh conditions. Where is the thriving? And you'd be right, let me get to that.
Though the thriving can take longer to see and appreciate because of the many external barriers we face, it develops. We become incredibly creative in adapting to these challenges. In finding ways that work for us to be able to engage in work, in school, and in life even though they may look different.
What I have been through has only helped me grow in compassion and in my desire to help others, or maybe I should say to empower others. I wanted to spend more time on the thriving, because I know that my experiences have led me away from spending too much time on the success continuum and far more on the meaning and seeking joy continuum, but I am seriously spoon-low right now.
But this is why I chose to use extremophiles as a symbol and a title for this blog.
What I have been through has only helped me grow in compassion and in my desire to help others, or maybe I should say to empower others. I wanted to spend more time on the thriving, because I know that my experiences have led me away from spending too much time on the success continuum and far more on the meaning and seeking joy continuum, but I am seriously spoon-low right now.
But this is why I chose to use extremophiles as a symbol and a title for this blog.
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