Thoughts

I feel more like a broken record than ever before.

I have mixed feelings about it. I’m happy that I’m voicing my pain, my discomfort. I’m not only acknowledging my pain, I’m acknowledging that there is a problem. “I don’t feel well.” I’m saying more than just that. I’m saying that I have a problem, that it’s not normal. I shouldn’t be this way.

But, at the same time, I feel like nothing is changing, like I’m not doing enough. I don’t know what else I can do though. I take my medicine, I sleep, I watch what I eat. I don’t know what I else I can do but feel I should be doing more. This is me feeling like it’s my fault, that I need to fix this some how. I’m just frustrated. I’m so frustrated that’s it’s been so long and nothing has changed and I’ve been trying so hard. I don’t know what else I can do.

I have people who care enough to listen to me say these phrases over and over again. I’m grateful for that.

But – like when you say a word over and over again, it loses it’s meaning; the phrases lose their meaning. I’ve experienced it before – when people stop believing. I’m scared of that, another invalidation of my pain. If I don’t say anything, then I don’t know – I don’t have to worry about them believing me or not. I don’t have to be judged for my management methods (or lack thereof). I don’t have to worry about the other reactions. I think I want sympathy but that doesn’t always happen. I’m scared when that will happen. It’s beginning again.

I say I don’t feel good and I get this look. It’s that ‘you always have a headache’ look. I know they can’t do anything but saying something just helps – it pulls me out. But I get a look, it’s a look of annoyance. I don’t know if it’s at me or my head or both. But me and my head are the same. Annoyance with my headaches is annoyance with me. Sometime it’s sympathy, sometimes it’s not. Maybe they’re just as frustrated or annoyed they can’t do anything either, or if they’re annoyed with me.

It’s not my fault, it’s not my fault, it’s not my fault. But I get all of the blame. I deal with all of the consequences. I have pain but I feel like I can’t talk about it without being annoying, without bothering someone (who isn’t being paid to listen to me). I feel like I’m bitching. All problems are valid, and I can’t say mine is worse than someone else’s.

I’m a broken record.

I don’t feel good. My head hurts. I don’t feel good. My head hurts. I don’t feel good. My head….

WE KNOW. i know.

I’m frustrated. I’m exhausted.

I just want to be better.

First Night on the Bathroom Floor

I was always so grateful I didn’t get the whole migraine experience – always just the pain. I didn’t always get the aura, the nausea. Just pain and sensitivity. Sometimes I’d feel sick but that was just because the pain was too much.

The air conditioner kicked on and two things happened. My stomach flipped 180 degrees and managed to lodge itself in my throat and the right side of my head throbbed. My eyes snapped open before snapping shut again. My room was cast in a soft glow from the screen of the a/c unit. I can’t stay in bed – the rattling of the a/c sounds like a train, the light in my room feels like I’m staring at the sun. I, not so gracefully, roll out of bed and stumble towards the bathroom with a pillow clutched to my chest. I toss the pillow onto the bathroom floor. There’s a soft glow coming from the night light in the wall, I rip it out. I lay down on the floor, too sick to move from this spot. Faintly, I hear the my parents TV across the house, my sister’s a/c unit rattling on the other side of the wall, my mom’s pond outside bubbling. My shoulders and hips press uncomfortably onto the hard floor. With my stomach turning and turning I can’t imagine myself anywhere else. I close my eyes in the darkness.

It’s not until closer to dawn do I finally spit up some stomach acid and finally feel a little bit better.

MHAM Days 17 and 18

Day 17: Hope rises like a phoenix from the ashes of shattered dreams.

After the migraine breaks, I don’t feel like a phoenix. I feel more like an old ship that’s just come out of a hurricaine, drifting towards port. I feel tired, worn down. I feel creaky. I don’t feel like I’ve been reborn until after I’ve eaten and slept. That’s when I feel the best. I feel unstoppable, and fearless. I just survived my worst and now I’m ready to be my best.

Day 18: Share what your doctor has said to you that give you hope.

It’s not one specific thing but my doctors have had an air of confidence to them. It’s not a cocky confidence but one that promises me their best in getting me to the best I can be – which gives me hope.

MHAM Day 14: Hope lies in dreams, in imagination and in courage

Day 14: “Hope lies in dreams, in imagination, and in the courage of those who dare to make dreams a reality.” Jonas Salk

This comes from a man who found a vaccine for polio, a previously incurable, devastating disease. I’m not sure how much you can compare the two, polio and migraines but the message of hope for a cure rings true for both. Polio is a virus, migraines are something else entirely. Such little research has been done about migraines. We are not looking for a cure for migraines, but rather management.

As far as the quote goes, we, migrainuers, can only dream of a cure. We dream of a life without debilitating pain. We dream of a normal life. We dream of spending more time with our families and less in the darkened, silent bedrooms, with our treatment options. I dream of a life where I do not have to take medicine where I fear a missed dose. I dream of a life where I am 100% me not not divided between who I am and who I am with a migraine. My reality is that I’m never going to get that time back and my reality is that I’m going to lose time in the future. My reality is the only escape from the pain is sleep where I dream of my normal life still being invaded by headaches and migraines. Taken quite literally, my only hope of a normal life is in the world my unconscious mind creates when I sleep. My greatest fears should not be a missed dose of medicine, or not having enough medicine. It should not be worrying about making up classes, praying for the kindness and forgiveness of others, strangers, professors, for a condition I have no control over. I should not be worrying so much about my future as a functional human being at 21. This worrying started at 13. My greatest fear should be heights or spiders, not my own body. I should be fantasizing about my future career, spouse, and children, not headache care. I should be out on the weekends, having fun – not recovering from a weeks worth of headaches. Not dreading the next one.

Maybe our suffering isn’t enough. We are such a minority. We are not dying because of migraines, not matter how much we blame them. They call it depression. We scream into the void for help only to be blocked out by the bigger groups. We are the invisible patients, we are the lost patients. We are the ones suffering from such a misunderstood and under-researched disease that instead of being put under the microscope we are thrown out the door. We have no medicine for our illness. We take depression medicine because it’s really good for headaches too. Or blood pressure medicine because it helped someone’s headaches in the clinic trails. Or something else because it turns out it helps with migraines too. Not because it’s for migraines. Our medicine, cymbalta, topamax, botox, zonegran, are all flukes. Our medicine for the treatment of our disease is just a by product. Someone came up with these medicines to treat a more in demand, more profitable, disease – blood pressure, depression, seizures and we are given it as an after thought. We suffer from an illness, a debilitating, life threatening, disease unlike no other where there is not a single medicine made just for us, for our treatment. Because we alone are not enough. Our suffering is not enough to them.

I have suffered every day. I’ve been to numerous doctors. I dream of a life without I don’t wake up with a headache. A day where I do not want to immediately go back to sleep. Where I wouldn’t dread the headache to come, that I know will come. Where I don’t have to fear the big one because I have a preventative, I have an emergency medicine that makes me feel better, not worse. Where I didn’t have to wish I could fade into the void, where my headaches couldn’t find me. Where I’m free.

I still fight, I still go to the doctor’s appointments. I’m still trying new medicine. I don’t know if that’s courageous or stupid. It has to be courageous because without it being courageous, I’m nothing but a migraine.

MHAM Challenge 4

What large thing gives you hope for living with Headaches and Migraines?

The huge community of supporters I have give me hope. Be it my family, friends, doctors or my readers, they all give me hope. You all genuinely wish me well. In my darkest moments, I remember everyone else. How much they love me or like me, how much they wish they could help me, how much they do. My family has been a big support in the beginning, living with my migraines with me. While they do not experience them directly, they see me suffer. My friends learn how to help me and do everything they can to help me when I need it. Some of my doctor’s have been wonderful, helping me to feel better and keeping my health on tract, especially my gynecologist and neurologist at Jefferson. Both Dr. Smith and Dr. Goldberg have been so supportive and wonderful. This blog has helped me move from just suffering alone to advocacy. Sharing my story with others has not helped other, I hope, but helped me as well. I know how to connect with people, be it a phone call or a blog post – I can connect with someone who understands and can help me convey my feelings and that gives me hope. I’m not suffering alone anymore.

MHAM Challenge: Day 3

What small thing gives you hope for living with Headaches and Migraines?

The small things are what keep me going. I developed headaches at a very young age and I was angry for a long time about it, bitter. I think I still am sometimes. I thought about suicide a lot in high school – fortunately these were only ever thoughts in my darkest moments. I wised up quickly when I decided to live not with just headaches and migraines but despite migraines and headaches. I would not let them defeat me.

The rare pain free moment kept me going for a long time – I would live solely for those moments and in those moments as few and far in between they were. I would hope that those moments would be more frequent.

I still believe that one day I will be pain free more often than not. Not such a small thing but it gives me hope. I hope that in my life time medicine will advance enough to insure I remain pain free.

Other people give me hope, everyone else living in situations similar to mine and how they preserve despite their odds reassures me that I can do it. If you can do it, I can do it.

A note: I am kind of late to this – honestly I forgot about the blog challenge. I will post day 1 and 2 in the next few days and continue with day 4 tomorrow.

If you’re interested in joining this blog challenge info can be found here.  

Boiled Over

I wait in line  at the pharmacy. I hate doing this, I’d rather anyone in the world pick up my meds for me. This whole process is tiresome. The pharmacist working the register is the one I hate, Chuck. He makes everything so complicated – more than it ever has to be.

I give him my name, spell it out twice, my birthdate. He turns around and grabs it off the shelf. Rings it up. I’m tapping my fingers on the counter, annoyed.

“It will be eighty dollars,” he tells me.

I roll my eyes, “did you run through the insurance or the discount card?” I ask.

“The insurance,” he replies, “it’s cheaper.”

“No it’s not, could you run it through this discount card – it will be thirty,” I tell him. I had the exact same conversation two days ago with him – there’s a note that he just ignores.

“If you could just have a seat,” he tells me. I roll my eyes and have a seat on the bench near the window.

My sister and her boyfriend wander over to me.

After some small talk and general consensus that Chuck is an ass, my sister’s boyfriend talks.

“Why does this happen every time?” he asks me.

I’ve had it. Finals just ended. The anxiety of running low on my medicine after what happened last time when I was out is too familiar. My head hurts.

“Because I have a fucking condition that can’t be cured and the medicine is fucking expensive and I’m going to have to take it the rest of my life and I don’t want to pay almost two hundred dollars a month when I can play sixty a month the rest of my life,” I spit at him.

He’s annoyed too that I have to do this but he asked the wrong question at the wrong time.

Boiling, Bubbling

I have that stupid shit eating grin on my face that only Vicodin gives me. I’m still in pain but I do not care. The world could end and I’d still grin.

“How late were you up ’til?” I hear someone ask.

“Two,” I reply. It’s not late unless you consider the 6 am alarm and the almost hour drive to my 8 am final. It doesn’t help that I was working solidly on the paper that goes with the test for the entire day before hand as well.

“Why were you up so late?” they ask shocked.

“Paper,” I reply.

“Why didn’t you start it sooner?” they ask.

And it’s the wrong question. Maybe I’m still defensive about my choices and my denial about headaches being a disability.

I couldn’t start it sooner. I woke up with  a migraine. I don’t need to hear shit from you too. I hear it enough from myself. I know I should have started my paper a lot sooner but I have a chronic condition and I work when I can. I don’t have the pleasure of feeling great all the time and being able to work on homework whenever the fancy strikes. We all can’t live such a charmed life. I had other papers due, other projects. I woke up with a migraine I didn’t know I was going to have but it wasn’t a migraine just a migraine strength stress headache that was a slippery mother fucker that took way too much medicine to just leash – not cure. I knocked it down to a 8 instead of an 11. I struggled through every key stroke every thought felt like a sledge hammer. So, of course I was up late working on my paper late because I had to work harder on it than everyone else. 

The words itch on my tongue. They crash into each other in my brain, a big jumbled mess.

Like your life I hear in my mind.

I don’t say it. I couldn’t.

I just shrug.

Explanation for my Recent Absence

It’s been like a month since I published anything. It’s a combination of too many things. School picked up a lot faster than I realized. It literally swept me off my feet – not in the romantic way – rather the ripped the floor out from under me and I was in free fall scrambling for any type of purchase.

I went to Jeff on Tax Day. It was good – we’re keeping on keeping on but recently since the appointment I think an increase of the dosage would have been beneficial.

I had final projects due before the week of finals (who the fuck does that?).  I have finals a few days and the days I wasn’t being tested I was studying or writing papers.

I think I could have at least told my readers but I didn’t. I had “blog post” in my to-do list for a while but I just removed it. I wanted to pretend I wasn’t that girl for a little bit the one with migraines all the time. I took it off my list and stopped worrying about it. I took way too much otc pain killers and when they didn’t work I slept. Almost a month of denying it. Denying I had a disability, denying that my body doesn’t work right. I put off going to the pharmacy – sending other people – to pick up my medicine so I wouldn’t have to be a 20-something picking up anti depressants getting looks from the pharmacist, from the technicians I went to high school with. I didn’t think about taking the cymbalta, the near constant dizziness (a side effect), and having to take this the rest of my life. It was a vacation from myself. I listened to a few of my friends talk about therapy while I didn’t think about how I should probably go back but can’t. I can’t because I’m in such denial about everything.

Not opening a new blog post just added to the image of being normal. I don’t blog about a condition I pretend I don’t have.

Conversations

I sit down and run my hands through my hair, taking a moment to squeeze my skull and rub my temples. I close my eyes for a moment, breathing deep.

“I have a headache,” I annouce to my friend. She gives me a small sympathetic smile. I take a sip of water. “This is a ‘I haven’t drank enough water and ate lunch too late’ headache.”

She goes back to her phone. I rub my temples.

Class is excruciatingly slow and I’m slipping away. Instead of being totally present, I’m degressing to my headache panic mode, where I’m loopy and teary eyed. I manage to get through class. I almost rested my head on my professors belly when she stood behind me. It’s something I would do with my mother, rest my head on her belly and she would run her fingers through my hair. I’m instinctly seeking out comfort.

Class is over and I head back out into the bitter cold. I walk as quickly as I can and that’s only a shuffle. My head is pounding.

“What’s taking you so long?” my friend asks, her eyes scanning the parking lot for my car, “hurry up.” she chides.

I stop and look at her, incredulous.

“what?” she asks.

“I have a fucking headache,” I snap back, “I’m going as fast as my pounding head will allow me.”

She looks sheepish, apologetic.

“Are you all right to drive?” she asks.

“Yeah,” I bite out.

It must be nice, being able to forget about pain.