Thursday, August 30, 2018

Being a zebra...

Sometime around now, a week ago, I got a tickle in my throat that turned into a raging sore throat that turned into uncontrollable coughing in just 18 hours.  I went to the doctor, received a prescription for antibiotics, and came home.  Saturday and Sunday, I got worse, but Monday morning the antibiotics brought me to the proverbial corner around which I turned.

I am amazed at just how well I am, cough-wise, given where I was.  But I am also so very, very, very, very, very, very, very exhausted.  I can barely do anything without needing a nap afterwards.

I saw the integrative medicine specialist yesterday, but it was the first visit I left a bit disappointed.  I talked about the incessant, overwhelming exhaustion that I have been battling for well over a year now, but more so of late, illness not withstanding.

Just as I did with my GP, I talked about how I fall asleep sitting up now.  I feel better after a nap, but only for a few hours.  When Becky was here, the adrenaline of my giddiness over her visit helped me stay mostly awake during the day, but I have been sleeping ever since she left.

Very little have I accomplish, although I did systematically organize and downsize all of the non-kitchen drawers in the house.  I want to do more, to address the basement and the attic once more.

But I was too exhausted.
And then I became ill.
And I am even more exhausted.

Being chronically ill takes you out of the rhythm of the rest of the world.  Not working means you no longer count the days to the weekends or mark the days until the next holiday.  At church last night, the pastor mentioned that it was Labor Day weekend this weekend.  Had he not done so, I am not sure if I would even know that.  I mean, I have not been on social media too much and I have not been streaming or watching television.  Aside from a couple of movies, I have not watched anything else since Becky left.

The house is so very silent.

Being out of the rhythm of the rest of the world makes your days and nights long.  When they are mixed together by the need for excessive sleep, life becomes almost unreal.  At least to me, it does.  I feel like a non-person at the moment.

An exhausted non-person.

I was disappointed in talking about the exhaustion because she asked if I wanted to do a sleep study.  I DO NOT HAVE SLEEP APNEA!  When you have a chronically ill patient, you really are supposed to be looking for those zebras!!

Sleep is ... complicated.  I sleep, on average, 90-120 minutes at a time, before the ice packs melt enough to then have pressure on the nerves on the back of my head and then I start getting sick and then I wake.  Waking ill over and over and over during the night makes for a long night.

I wake, stumble out of bed, battle presyncope, go to the bathroom, trudge downstairs, fetch fresh icepacks, and stumble back upstairs and into bed.  Often, I am asleep nearly before I finish arranging the icepacks on my pillow.  But sometimes I read a little bit just because I haven't been able to read much with all of this falling asleep stuff.

I also battle violent waves of nausea, cold spells, blood sugar crashes, and writhing.  So, in between those sleep segments, I am often awake ill.

When someone tells me that I would feel better if I would get more sleep, I want to punch him in the face.  When someone tells me that I would feel better if I would go to bed on time, I want to punch him in the face.  When someone tells me that I would feel better if I would go to bed earlier, I want to punch him in the face.  When someone tells me that I would feel better if I would get up earlier, I want to punch him in the face.


It is not that sleep is my enemy, it is that my body is attacking itself, oft making sleep this near impossible challenge.  SIGH.

There are medications that you can take for exhaustion.  I am not actually looking to take yet another mediation because of the expense, but I am wanting to have a discussion about when is the time to consider medicating for exhaustion. I mean, my quality of life is poor enough without struggling to stay awake for more than a couple of hours before falling asleep whether I want to or not.

All I get, though, are discussions of sleep apnea, narcolepsy, insomnia, and sleep habits.

I do not have sleep apnea; I am chronically ill.
I do not have narcolepsy; I am chronically ill.
I do not have have insomnia; I am chronically ill.
I don't have poor sleep habits; I am chronically ill.

And I can have 10 hours of good sleep and still wake exhausted because I am chronically ill.


In medical school, students are taught to not look for zebras, but instead to think of horses.  The idea being that the exotic is not common.  Stick with the basics.  But I live in a world of the exotic.  I am a zebra.  It annoys me to no end when my doctors, who know full well I am a zebra, talk about horse issues, and ignore the reality of life as a zebra.

I am, at the moment, a rather exhausted zebra who would really like some help with that.

I see the cardiologist on Tuesday and then the GP again on next Friday.  Over the coming weeks, I will also see the rheumatologist, the pulmonologist, the neurologist, the ophthalmologist, and the podiatrist.  With the exception of the latter two, I am hoping one of those doctors will hear me and remember my stripes.

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