When this all started, I though I had only one demon to slay: pain. It started in my head, and I had a world of a time convincing everyone that what I was suffering was real. It took a few years, but then finally I was listened to and given the proper care I needed to vanquish it. I was able to do that, only to have that battle leave me broken in a way that I could not escape long-term opioid control. That also took a few years of convincing doctors, but finally I received proper treatment to control that problem as well, and in that month, I was able to return to work. Only another problem was brewing, one that I had no way to know was developing, nor one that I could take steps to avoid. So now, out of left field, I have Stage 3(a) Chronic Kidney Disease, and they can't tell me why.
Let me tell you a bit about the difference between fatigue and clinical fatigue. Most of the time, our bodies tell us when we're sleepy, and we get the urge to sleep. But what if that urge didn't go away no matter how much you slept? A marathon of sleeping 20 hours a day for weeks has no impact. The urge never goes away. Even if you think you're alert and working, what could actually be going on is you're asleep and dreaming that you're working, and you won't notice you've fallen asleep, until you wake up, embarassed, because you realize what you just said was dreaming jibberish and now your co-workers in the meeting are looking at you funny. (Yes, falling asleep, mid-conversation....)
Stimulants, beyond caffeine, are right out (and even caffeine is suspect). Just the "mild" stimulation of an SSNRI was enough to send my resting heart rate into tachycardia, and medications that would help my ADHD are out of the question for the same reasons, only worse. And what's crazy is how much novicane my dentist needs to inject me with to numb the nerves.
Someday, far off in the future, some doctor is going to read this over an go, If she only knew she had Oblech Disease and given the proper course of treatment, she could have lived a normal life!" But until that day, I'm just going to be a medical unicorn whom everyone scratches their head at, because all they've got is horse studies, but clearly I'm not one of those....
I was on the phone with my mother and I asked her if she had picked me in a field, or had me developed in a lab, because I was just tired of all these mysterious health issues. Her voice dropped to a low and ominous tone, "Someday when you're ready, I'll tell you..." I snapped, "Don't you dare do that to me!" And we both burst out laughing.
Maybe there is some way to understand it all. Maybe not soon enough for it to matter to me, maybe just in the Nick of time. I have no way of knowing, and there's no sense worrying about it. I have bigger problems to deal with, right here, today, that I'll just have to learn how to deal with this. I know I can develop coping mechanisms eventually. I was able to do the same with my inability to take ADHD medication. It's just another thing.... It's frustrating that I have this much manage on my own, but I'll find a way.
Just watch me ;^)
[UPDATE]
It's not my kidneys! Thank heavens!
Although now we're chasing down why I'm falling asleep like this. I'm going to go in for a sleep study... We're thinking possibly narcolepsy.
Let me tell you a bit about the difference between fatigue and clinical fatigue. Most of the time, our bodies tell us when we're sleepy, and we get the urge to sleep. But what if that urge didn't go away no matter how much you slept? A marathon of sleeping 20 hours a day for weeks has no impact. The urge never goes away. Even if you think you're alert and working, what could actually be going on is you're asleep and dreaming that you're working, and you won't notice you've fallen asleep, until you wake up, embarassed, because you realize what you just said was dreaming jibberish and now your co-workers in the meeting are looking at you funny. (Yes, falling asleep, mid-conversation....)
Stimulants, beyond caffeine, are right out (and even caffeine is suspect). Just the "mild" stimulation of an SSNRI was enough to send my resting heart rate into tachycardia, and medications that would help my ADHD are out of the question for the same reasons, only worse. And what's crazy is how much novicane my dentist needs to inject me with to numb the nerves.
Someday, far off in the future, some doctor is going to read this over an go, If she only knew she had Oblech Disease and given the proper course of treatment, she could have lived a normal life!" But until that day, I'm just going to be a medical unicorn whom everyone scratches their head at, because all they've got is horse studies, but clearly I'm not one of those....
I was on the phone with my mother and I asked her if she had picked me in a field, or had me developed in a lab, because I was just tired of all these mysterious health issues. Her voice dropped to a low and ominous tone, "Someday when you're ready, I'll tell you..." I snapped, "Don't you dare do that to me!" And we both burst out laughing.
Maybe there is some way to understand it all. Maybe not soon enough for it to matter to me, maybe just in the Nick of time. I have no way of knowing, and there's no sense worrying about it. I have bigger problems to deal with, right here, today, that I'll just have to learn how to deal with this. I know I can develop coping mechanisms eventually. I was able to do the same with my inability to take ADHD medication. It's just another thing.... It's frustrating that I have this much manage on my own, but I'll find a way.
Just watch me ;^)
[UPDATE]
It's not my kidneys! Thank heavens!
Although now we're chasing down why I'm falling asleep like this. I'm going to go in for a sleep study... We're thinking possibly narcolepsy.
No comments:
Post a Comment