Today

This was not written today. But it was. All of my todays are pretty similar. One runs into the next and I can't always tell them apart. Some days are quieter and some are more active, but all involve pain. Whether something currently hurts or it's just a looming threat, it clouds my perspective and sways my judgment. Here is a day in my life, maybe today.


0630: I wake. I have to pee. If it's still dark outside I hope I can stumble back to bed and get back to sleep. If it's light, I know it's over. There is no such thing as too much sleep. I don't move when I finally accept that I am awake. I wait and see what my head does. Some mornings it's quiet, I'd hardly know it's there, except for the echo of a throb that remains from yesterday's migraine. I stretch gently before I get up, so I don't shock my body in any way. My head doesn't like it when I move too fast. Once I am up and about and have had a pee, I water my plants. I putter and examine for new growth and bugs. I get on the computer and check craigslist, my email and generally net around until my eyes start to ache, which is anywhere from 10 minutes to 2 hours. I close the laptop and put ice on my head...

0800-1000: ...but it's a token gesture because the headache has arrived and it will not be ignored. I acknowledge it ruefully, medicate and watch TV (unless my head won't allow it, then I just lay down and meditate.) I eat a simple breakfast, like eggs and toast. If I can, I'll do a load of laundry, or wash some dishes. Then I usually have to put ice back on my head and lay down for a while.


1000-1200: I get back on the computer for as long as I can get away with, and look for the miracle job that will fulfill me as a human being while generously allowing for all of my disabilities and personal quirks. No luck, so far.

1200-1400: Eat lunch. Watch TV. (Or not.) My head is already draining my energy and I'm starting to get short. My charmingly spontaneous boyfriend springs it on me that we have to go pay a bill NOW. Which means I will be battling/succumbing to a thousand more triggers that I haven't prepared for. I only have a few spoons left, having spent them on laundry and feeding my dog, so I need to choose my actions carefully. I dress, slowly. It hurts. I put in my earplugs (if they aren't already in) and put on my sunglasses. I drink some coffee. The caffeine halts the headache, usually, and gets me there and home. My short venture into the real world is full of normally benign irritants like SUNSHINE! HONKING HORNS! and CONFUSING TRAFFIC SITUATIONS! (These are all in caps because that is how my head receives them.) Once home, I collapse back into my comfies, relieved.

1400-1700: The caffeine wears off. The headache has renewed its assault. Ice. Water. TV on mute/earplugs. I'm irritable and exhausted, and my nerves are frayed/fried (couldn't decide between euphemisms, there.) I yell for no good reason and regret it a moment later.

1700-2200: I eat dinner, whatever I have the energy to make or can get my culinarily challenged boyfriend to nuke for me. I whine. I snuggle with my ice pack. I watch TV (or not.) Eventually, I go to bed and drop off to sleep, grateful for the reprieve.

Of course, there are variations on the theme. I'll take a slow walk around the block or take the dog to the park on a good day. I might spend time with a friend or hang out with my parents. But that's not on a typical day. I have to save up/spend a lot of spoons to be getting up to those kinds of shenanigans, lately. But it just makes me appreciate life and those I love all the more, and realize now how important that is to me.

Silver linings.








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Putting the Hurt Into Words

I've been asked what it feels like to have a migraine and what makes my headache problems so debilitating. Since I am usually trying to answer these questions with a headache, and usually end up shrugging and grunting in confusion when the words get jumbled, I am going to try to articulate the answers now, and maybe I'll send out a newsletter at some point. Heh.

The pain is often the least of my symptoms. Sure, my head hurts. But, I've sucked it up before. I remember thinking I had a brain tumor in high school because I had headaches for weeks at a time. But I could still work, school, drive, talk, laugh, drink, smoke and dance with a headache. I'd take some tylenol, or just ignore it and go about my life. I've had a million headaches. It's the disorientation, confusion, dizziness, and irritability that have caused the most problems, I think. If it was just pain, well, I can handle pain.

It's the disorientation, mostly, that is disabling me. It isn't always directly linked with pain, either. I'll have a completely dealable amount of head pain some days, but I'll be slurring my words and dizzy. Or noise and light will be totally intolerable and I can't open my eyes or hold a conversation. Or I just can't concentrate on anything other than what crap Lucy is spewing at Simon on 7th Heaven. That's my biggest symptom lately. Watching horrible tv.

My emotions are out of control, too. If too many triggers are pushed at once, I tend to lose it. For example, I go to a mall with my friend. We talk and laugh and walk. There are fluorescent lights above us. We pass a candle store that you can smell for 200 feet in every direction. Then we pass the "androgynous emo boutique" that pumps out rhythmic beats with a bass so loud my stomach is vibrating with every pulse. And then the kiosks, whose salespeople have become like carnies, shoving items in your face and calling to all passerbys. I yell at a kiosk carny when she comes at me with a lavender and eucalyptus scented neck pillow. Her face is hurt, and I feel bad, but I am DONE.

My extremely patient boyfriend can only listen to the tv at a normal level if I have earplugs in. If they are out, the sound is practically muted and I get angry at every commercial that dares breach the quiet. It's like an assault, I'm being violated by Billy Mays because he has to scream at me about whatever new product he is hawking every commercial break. I am sure the product works and Billy Mays is a great guy but every time I hear his intro, I want to kill someone.

So, it's not so much a headache that I have, but a stroke/psychosis/headache combo.





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Amusing Earplug Anecdote

Earplugs in, I walk into the living room and ask my normally not ass-grabby boyfriend a question. I watch his mouth to discern what he's saying, but he's mumbling and looking down. Actually, he's looking me up and down and making a pervy face. I confusedly start, "I can't hear you..." he reaches out quickly and squeezes my butt, so I get all high pitched in surprise, "...and you are grabbing my ass!!!" He pulls me down on to the couch for a better grip and I plead a desperate, confused, slightly panicky, "What's happening??" before cackling like a crazy because my butt is ticklish.

Then my head started to hurt from the flailing and cackling, so I calmed down.

Thank you, earplugs, for allowing me a few moments of giggly rough-housing I wouldn't normally have. I love you. More...

Love Hurts

The people I care about most give me the worst headaches.


Dear Everyone in my Real Life,

I've been less than honest with you. Every time I see you, you ask me how I am with a look of pity on your face. I can't bear pity, so I lie. I make light. I pretend that my head is just an inconvenience. I smile and change the subject. But here's the truth: I am severely disabled. I have chronic pain that keeps me horizontal more than half of the time. I wear earplugs to watch tv. Sometimes I wear sunglasses, too. Sometimes it hurts too much to do anything but lay there with an ice pack on my face.

You, my dear loved one, are making it worse for me. I may love you, but I have a few problems with the effect you have on my head. Here are the top five reasons to justify my impending psychological break and subsequent murderous spree:

1. You stink. ANY smells can send me over the edge into the migrainous pits of hell, so your shampoo, conditioner, perfume, makeup, body lotion combo makes me want to push you away violently when you go to give me a long sympathetic hug. I don't, though. I don't want to hurt your feelings, so I hold my breath until you are done comforting me. I hope it makes you feel better.

2. You and/or your environment are noisy. I know you like to have music on in the background at all times. I used to like it too. Now, holding a conversation with any other sound competing is impossible. I get confused and angry, and start feeling nauseous. Your look of irritation as I turn it down (or off) shows me exactly how much you really sympathize with me. I'll joke to make you smile again, but I'll never forget your impatience. Also, I love/tolerate your child/dog/bird/girlfriend but I can't handle that horrible high pitched noise it/he/she makes. Hence, the earplugs. So, stop asking me like I'm not going to tell you that your favorite person/animal/thing is assaulting my head with its goddamn yapping. Cause, I will.

3. Every light in your house is on at all times and they are all piercing my retinas and stabbing my brain. Stop looking at me funny when I squint and look away from the lights or put my sunglasses on.

4. You are demanding. When we hang out, you ask a lot. I am supposed to be talkative and interesting and entertaining. I know this because if I am not, if I am quiet or more still than seems appropriate, I am subjected to a barrage of are-you-okay's and what's-wrong's that leave me even more exhausted. If I'm being quiet, it means I need some quiet time, not that I need to spend 30 minutes reassuring you.

5. You are impatient. I'll always remember when you, in frustration, told me to "get over it". And I'll never forget when you asked me, in a snide tone "Oh, we have to make accommodations for you now?" I'll remember your insensitivity and your cruelty forever and it will always taint who I think you are as a person.

I wish I could go back to being normal. I was the first to arrive at a party and the last to leave. I was loud and fun and wild. But, I'm not anymore and I may never be that person again.

Love, Me




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Lists and Parenthesis: Like PB&J

My top five reasons why having a chronic migraine sucks, and the qualifiers that keep me from getting too bummed about it:

1. It hurts to laugh. (It doesn't hurt to smile.)

2. I can't control my anger. (I no longer let myself remain in unpleasant situations for the sake of others.)

3. I get lonely. (I have been reminded of the value of true relationships.)

4. I have less than 100% faith in my mind. (A little kick to the ego to remind me I am not invincible and all powerful was probably warranted.)

5. My quantity of fun has been hugely reduced. (My quality of fun is higher than ever.)




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Head State

It's been a bad month. Lots of head pain and associated symptoms. Not many breaks. I've been keeping quiet and trying to minimize triggers. Finding ways to smile as often as possible because I can't feel sorry for myself. Self pity makes my head hurt.

My symptoms continue to change. The nausea comes and goes. My vision is either dramatically worsening or my migraines are making my eyes do weird things.

I am running very low on spoons lately. I haven't left the house unless it was necessary, which it only is once or twice a week. Even a short conversation is draining. I find myself not talking unless it's necessary and getting angry and frustrated if I'm asked to repeat myself. I've been lucky that I've only felt depressed and unmotivated once a week or so. Otherwise I am maintaining a positive attitude. I can't control what is happening to me. I can only ride the waves as best I can and try not to get smashed against the rocks. And if I have not been smashed, it's a good day.

That sounds really passive and helpless to me as I type it out, but it's the outlook I need to get through these bad times. I'll reserve my outrage and unflappable resolve to find a cure until I feel better.



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