Conversations (2)

“Why are you standing like that?” my mom asks. It’s more accusing than concerning.

I’m standing, one hand braced against the wall, with a foot in the air, rolling my ankle trying to shake the pain.

“My foot hurts, I don’t want to stand on it,” I tell her.

From across the room my brother pipes up, “If I don’t take my gout pill I won’t be able to walk in a couple days.”

Then take your medicine. Be grateful you have medicine that works for you, at least you have it.  The medicine I take is more problematic than helpful,” I yell indignantly, and limp off in much the same fashion.

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Pens

“You see this pen here,” I pick it up, twirl it between my fingers. My voice is thick with pain. I sound exhausted, and drunk from pain.

Christ, it’s…

I squint to see the clock across the room but it’s no use. I check the phone in my pocket for the time.

It’s a little after noon.

I still have a couple hours to go.

“Uh-huh,” my friend replies, looking up from her text book.

I am not coherent enough to figure chemistry out. She’s not smart enough.

I look at the pen. It’s a simple Bic pen, nothing fancy. Clear plastic barrel with the tube of ink in the middle, a metal tip. It’s not even a fancy clicky pen.

Her eyes flick from the pen to mine.

I mime stabbing myself in the neck with the pen and make a choked noise. I hold the tip of the pen a couple inches from my jugular.

“Right in the jugular,” I say, “blood all over my chem homework and book,” I mime with my fingers blood spraying out of my neck, “what a pity,” I mutter.

She laughs and I groan with another wave of pain. I lay my head in my chem book, looking up at her.

The teacher circles us like a hawk, “need help girls?” she asks.

In more ways you can imagine.

I raise my head out of my book, “alright, let’s do this.”

Auras and Aphasia

I don’t experience visual auras. There is no vision loss or obstructed vision. I don’t get the snowy vision or any other vision problems.

For a long time I felt that my migraines weren’t migraines because I didn’t have this classic migraine symptom. A lot of people need the visual aura for classification of migraine. While my vision becomes a little blurry, I think that has to do more with the extreme pain I’m experiencing, the stress my body is going through and exhaustion.

I didn’t know there were different auras.

I experience aphasia in varying degrees. I use to chalk it up as brain fog and still do on occasion. I experience a verbal aura.

I find myself at a loss for words a lot of the time. I’ll lose words on the tip of my tongue, stopping mid sentence trying to find it again. Other times, I’ll be looking at an object and still unable to name it. It’s not that I didn’t recognize my sister’s cell phone as a phone, it was that my brain didn’t provide the word, it just stopped working.

Before I would stutter and I would joke that my brain was quicker than my mouth, that my mouth couldn’t keep up. It was like a pile up past my lips when I would get going and it would end in a wreck.

Now, I can’t come up with words when my head hurts. They’re just not there.

I have and always will be a story teller…except when I have a headache, when I experience aphasia.

Developing Symptoms and Fear

The other day I experienced my first visual aura. Because of my knowledge of migraines I knew exactly what was going on. Without that knowledge, the experience would have been terrifying. With the knowledge, it still made me feel uneasy.

I am trying Zonegran for my headaches and I have awful side effects. I was warned about the loss of appetite and dizziness. I was never told about the muscle or joint pain. I was terrified when I realized the joint pain was becoming a regular thing. I didn’t connect it to the zonegran. The medicine I’m taking for headaches and migraines, for excruciating pain is not suppose to cause excruciating pain in other parts of my body. I was scared because I couldn’t remember when it started. I am scared it’s not going to stop, that it’s never going to go away. Just like the headaches. The pain in my ankle or hand was so insignificant the first day I didn’t even think twice about it, I just ignored it. It wasn’t until a week later, when it still hurt that I became concerned.

Pain has become a constant in my life. It is the one thing I can count on to always be there. I’ve learned to deal with the pain behind my face, above my shoulders, my headache. I can cope with it. Pain anywhere else is a shock to the system, I don’t know how to deal with it despite dealing with pain on a daily basis. A stubbed toe brings me to tears. While the joint pain I experienced could be likened to a mild sprain, it was immobilizing because I didn’t know how to deal with it.

When I made the announcement that I thought the unshakeable, sporadic, muscle and joint pain that kept me awake all night was the beginnings of fibromyalgia or possibly untreated lyme disease to my family, they laughed at me. I checked into the symptoms of the new futile migraine medicine and found severe joint and muscle pain, I knew it was that. Now, I’m not so sure – I’m weaning myself off the zonegran but the pain continues.

I’m scared. I’m scared it’s not going to go away with the last zonegran and I’m scared it is.

Conversations (1)

“I don’t know how you stay in your room all day, on your computer all day,” my brother says, “I would be so bored.”

“It’s easy,” I answer, “when you have a migraine every day,” I get up and return to my room.  in

It’s easy when any movement increases my pain tenfold. It’s easier to stay in one comfortable place than to haunt the house. It’s easy to sleep the days away when sleep is my only dependable pain eliminator. It’s easy when someone who understands is a click away and the people a couple steps away just don’t get it. It’s easier to stay in my comfortable bubble in pain than deal with the rest of the world if I don’t have to.