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Fighting to Get Through Each Day With an Undiagnosed Illness

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I am making pancakes in my kitchen when a rooster replaces the eggs in the carton and I jerk awake in terror as I reach for my phone, positive I’ve overslept and will be docked points for missing the beginning of class.

The phone reads 8:20. I have enough time to get eat and dress and shower if I am quick.


But do I have the energy to be quick? I take an innovatory of my body, concentrating on how I feel, how I move, how I breathe. Is my head throbbing? Does my neck ache? How much are my joints hurting? Can I stand today? Well, won’t know until I try. I roll into a sitting position and wait for the world to spin or the nausea to twist my gut. When it doesn’t do it as bad as I expect, I decide to shower. It’s the first day of class, and I want to pretend everything is normal.

That’s all I seem to be doing anymore. Putting on a brave face and never mentioning most of my issues to those in class. They know some of it. My friends have experienced much of me, but even they do not understand how often I am faking it, or at least not showing, and how hard it really is.

“I’m always in pain,” I say with a laugh. “So don’t poke me.” It’s the thousandth time, the millionth time I’ve tried to explain my sore muscles. But how do I explain something I don’t understand? How do I tell my friends I like touch, but just can’t handle it most of the time? How do I describe the migraines – the only issue I have actually been diagnosed with – when I was never given the proper words to know there are stages to a migraine attack?

Every day is a fight. A struggle. Some days the only reason I get out of bed is the knowledge I will hurt worse if I stay. I will hurt anyway, but it is worse when I lie down. Recently, I’ve been falling a lot, and I am often shaking, moving without meaning to and dropping things. My muscles cramp in the cold, to the point that my entire body goes stiff and I shake with the force they exert. And that will cause my joints to ache for the rest of the day, or longer.

Last fall I thought it was fibromyalgia. But now, now I am not sure. Now I am struck with such weakness that I have to be helped up the stairs, or across the room. Now, I cannot lift half a carton of milk without crying out from the pain.

And yet, I get out of bed in the morning and shower. I know it’s a bad idea. I know I don’t have enough time this morning. I know it will exert energy I do not have to spare. But I don’t care. It’s the first day of class, with a new class, and I am dressing up today. I am rebelling against this fight my body has started.

Though I know it can’t last. I know it is only a matter of time until the next seizure.

As the hot water washes over me, relaxing my shoulders, my back, I try to imagine what I must do. I try to imagine what I am capable of today. I try to imagine school. I do not imagine that in three days I will be on my kitchen floor in tears. That I will have such a bad migraine mixed with muscle pain and weakness that I am seeing colors floating wherever I look, and I do not have the ability to make food. And later that night, I seize. Closer to the attacks at the hospital, back in June. The ones I only remember as moments in which I was trapped within my own body, trapped within writhing limbs.

Today I woke up in my chair. Today I didn’t go to class. It’s the first week of school, and I am already exhausted. No, actually I am always exhausted, it’s just worse. It feels like I’ve biked up a mountain only to realize halfway up my wheels are actually square. I am fighting every moment, every day. Right now is just the hardest it’s ever been, because before June I’d never had a seizure like what I am now experiencing on an almost daily basis.

Tonight is better, though I’ve dawned a hat to block out some light. Tonight I can spell decently, and my words have only stuttered a little bit. And so what if it took me five minuets to say the words “heavy,” “plastic” and “plastic plate” with such a struggle that frustration started to seep out and I just wanted to give up the need to speak? Most of the time I can laugh things off. Most of the time it doesn’t bother me when I speak wrongly or my head starts jerking to one side. But, in the moments when I am made aware of just how much I have been limited, it gets hard to just take it.

Because the truth is, I am supposed to graduate in March, and I do not know if I can. I do not know if I have the strength, physically and mentally, to continue. I do not know what is wrong with me. I am afraid it might be something unexpected and hard. But the worst part, besides not knowing, is trying to get doctors to see me, to test for the unlikely things. To believe this is not from stress, or hormones, or the result of emotions.

I want my fears to be heard and taken seriously. I want some way out, to get better or at the very least to manage my symptoms. I need help, and I need tests done. I just hope somebody with the ability to help listens.

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Thinkstock photo via Archv.

Originally published: August 10, 2017
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