migraine

Migraine Monday: Everything is (not) fine

I’m teetering on the edge of hope and absolute nihilism. I guess that makes me a Millennial, amiright?

Life in the two years of blogging silence has been a glorious shitstorm. Phrased otherwise, some things have been glorious, and others have been shit. I couldn’t write, though. Every time I tried I was too angry, too traumatized, too defeated. My world was on fire, and I was impotent.

this is fine

Image description: “On Fire” from Gunshow by K.C. Green. Full comic available at http://gunshowcomic.com/648 Frame 1: Question Dog sits in a burning building, with a cup of coffee on a table. Frame 2: Question Dog says, “This is fine,” with flames behind him and smoke above him, ignoring his peril.

I have enough distance from some of it to know I was in a constant state of emotional abuse and gaslighting at the professional level, and varying stages of grief in other areas of my life. My feet weren’t on a strong enough foundation of reality to form a coherent narrative of, well, anything. 

I tried to act like everything was fine, while I felt like I was going mad.

Maybe going mad is the only way to stay sane in a mad world.

I know some may see this language as ableist, but I do not mean it colloquially or glibly. My college religion professor Dr. Haar ended each class meeting with the words “Stay sane out there,” and he meant it quite seriously. How do we maintain our grounding in a world that organizes genocide, kills black men and women indiscriminately, pushes queer children and teens out of their homes, and attempts to cut health coverage for the disabled?

It’s Migraine Monday, and the only thing I have a grip on is my migraines. At least that’s something. It’s a start. I can wake up to face the day, the battle, the world. I can see out of both eyes.

My fistful of meds and I are ready to write again. I hope you’ll join the conversation, add your voice, and and your feet, and your hands.

 

Migraine Monday: The Long Way Down

April is my favorite month of the year. And I spent the entire month sick, almost better, and then even sicker.

I was sticking to my usual “head down and power through” approach to life as a means of pushing through, taking various decongestants and antihistamines in an attempt to take the edge of my symptoms, until a coughing fit got so bad it scared my students.

Bear in mind: I have taught this class for two to three years. We’ve been through some challenging times together. Ponyo and I used to take weekly trips to the de-escalation room, and her classmates remember those days. Ponyo, TLK, Freckles, and Elsa have been with me since the beginning of the migraines, through the ups and downs of various treatments and substitute teachers and days when we couldn’t get a sub and they shuffled off to another teacher for the last few hours of the day. They have seen me on some very bad migraine days when I’ve needed someone to pick me up because I could not drive. TLK can tell I have an aura before I tell anyone. When Sir New Dude arrived to our class in March, and we were introducing ourselves and saying whether we were deaf or hard-of-hearing, I was about to explain that I am hearing but I have auditory processing challenges when TLK interrupted: She’s hearing, but she gets migraines and then she says “What?” a lot. But she hasn’t had a bad one since… ((looks at the calendar)) January. Her last bad one was in January.

So three weeks after my spring break throat tickle had turned into a never-ending cold, when I descended into a coughing fit that originated from the core of my being, and even my students knew that offering my water bottle was pointless, it was pretty obvious I needed to see a doctor. Sir New Dude said, You need to go to the doctor. I replied that I planned to go to the Quick Care after school. TLK, the master of the Very Serious and Authoritative Quiet Voice, looked me in the eye and said, No, you need to go to the doctor now. I explained there were no subs. We don’t need a sub. We know what to do. We will not fight over the computers or the iPad. We’ll read everything we’re supposed to. If there’s a problem we know who is in charge. You need to go to the doctor right now.

I finished my work day, and after two hours at Quick Care and another hour at the pharmacy sorting out the mis-prescribed drugs to which I was allergic, I went home with cough syrup for my bronchitis, and instructions to use my steroid inhaler for my lungs (as well as for my sinuses as prescribed).

Seriously, who gets bronchitis in April???

The next day (Wednesday), I had an IEP meeting I could not miss, so I went to work. At the Eleventh Hour, I got a sub for the Thursday’s department field trip. Wednesday, I took my cough syrup with codeine at 5:30 p.m. and slept for 18 hours. Eighteen hours. I woke up every six hours coughing, so I took another dose and crawled back in bed. I spent Thursday doped up and lounging in bed with a book. I ate, I napped. Friday, too. All I did was shower and change into different PJs. Saturday? More rest.

On Sunday I started to feel a little more human, and I put on real clothes and went to church. Pretty sure I napped after that.

Last week I only took the cough syrup at bed time, obviously. I can’t really teach in a stupor. And I averaged only one coughing fit a day. But I was exhausted by the time the kids left my room at 3:30. And I was in bed by 8 every night. I’ve been off the meds since Wednesday.

I went two weeks without writing more than a few tweets and some blackout poetry. I did some very basic teaching. Solid teaching, but nothing fancy. My food intake consisted of waffles and coffee and toast and cereal and some butternut squash soup with wild rice (a big batch I could eat all week).

I have never been sick this long or taken so long to recover. That this has come at the end of the school year–a time when I already struggle to drag my sad, sorry ass out of bed to dunk my head under the shower tap and throw on some clothes–makes it even worse.

While I was taking it easy, I decided to catch up on some autistic advocacy reading and disability community conversations, and I saw a tweet (in a different context) that made everything click for me: Treatable doesn’t make disability disappear. 

My very successful migraine treatments don’t change the underlying condition of chronic migraine. My counseling and medication don’t change the underlying structure of my depression and anxiety. My invisible disabilities are still there, and they still require energy from my body and my mind. And when I get sick…. well, it’s a long way down. Because a cold or a cold+bronchitis is really a cold+bronchitis+invisibilemigraine+invisibledepression+invisibleanxiety. At the end of a very exhausting school year.

And after the long way down, it’s a really long way back up.

Self Care

I’m really tired.

My body is tired. My brain feels crunchy. My heart is tired.

So today I chose to limit my focus:

  • help my students through a rough Monday
  • catch up on my Spanish homework

I accomplished both tasks mostly unscathed. There were tears; none of them were mine.

The things about which I want to blog will still be there tomorrow. Tonight I will go to bed early. Self care is paramount.

I’m really tired.

Context

Content Note: The Vagina Monologues, migraines, mood disorders, and the Evangelical church

This weekend I performed in V-Day: The Vagina Monologues. Prior to the show, the venue hosted a wine reception. I am banned-for-life from drinking red wine on account of the old noggin; red wine is about the only thing I don’t miss, as white wine is my preferred variety of grape intoxicant.

I asked for a glass of white wine from the reception hostess, a friendly woman who recognized me immediately from monthly First Friday events downtown.  We made some small talk: I said that we only had red wine in the actors’ green room, she asked what it was about white wine that I preferred. I said that red wine gives me migraines. Her voice changed a bit, to that tone of a well-meaning but possibly too-familiar acquaintance, as she nodded in agreement and clicked her tongue: Mmm-hmmm. Soul fight headaches.

I need to provide a little background about why her response frustrated me as much as it did, considering she was just trying to offer a little empathy.

In college, I went to a little Christian coffeehouse at least half of my weekends. Sometimes there was live music, but most of the time my small group of three or four friends played ping pong or checkers, or sat around talking and telling stories. At the time, I also attended a fairly conservative Evangelical church, and there was a lot of overlap between the coffeehouse crowd and the college/career small group at the church.

I had grown up in a church, but this was the first time in my life I’d experienced polarizing worldviews among church folk. I often encountered mistrust or outright rejection of science or branches of the medical field. I dated a young man who told me I needed to reevaluate my salvation because I took Biology and intended to teach science in the public school system. I met a single mother who had recently started attending church, who was in tears because her mentor told her to throw out all her preschooler’s favorite dinosaur books. And I heard over and over from people around my age (19 and 20) that I was sinning every time I took my antidepressants or went and spoke to my therapist.

I have lived with anxiety since I was a child. I started showing symptoms of depression in middle school. I didn’t get any mental health treatment until I was a senior in high school, and it made a significant difference in my quality of life. But with this group of acquaintances, my diagnoses were seen not in terms of mental health but of spiritual health. The solution to my crushing depression and debilitating anxieties was not to develop strategies with my therapist and to take a medication to level out my moods, but to pray more, read my Bible more, and join more groups at church.

Since beginning my therapy and counseling, I have been open about my long process of healing and recovery because I want to help chip away a the stigma of mental illness. I spent far too long feeling broken to let other people suffer in silence. So I kept talking about my journey if the topic came up. And acquaintances continued to attach spiritual significance to my struggles. Had there been times when my there has been a link? It’s true that I draw strength from a lot of places. But the insinuation I had a spiritual defect from people who did not know the workings of my spiritual life was insulting. 

Which brings me back to Saturday night.

The wine hostess poured my glass of white wine and referred to my migraines as soul-fight headaches. I groaned somewhere in the back of my brain. I don’t want people I barely know to attach spiritual significance to my migraines. When I am in one, I am very much in my body. When I am in one, I want nothing more than to transcend this mortal plain, but I am crushed inside this vascular mass. I am not in some deep fight at the soul level, I am just taking an eighteen-hour nap. If I am conversing with close friends, maybe then we can have some conversations like this, but not here, not now.

My reply: No. Not really. It causes brain damage, actually.

Later, my best friend pointed out that the hostess had said sulfite, and not soul fight.

I can be such an ass sometimes.

Bouncing Back is Not Very Bouncy

I love roller derby.

Being part of a roller derby team was the first time as an adult that I had a solid group of female friends. I’d always felt like a bit of an odd duck; I never fit in with a “group.” I had girl friends in college, but I still gravitated toward friendships with men. Roller derby gave me a sisterhood.

I used to skate. A lot. I skated two or three days a week, and did off-skate workouts the other days. I had never been athletic. Roller derby gave me physical prowess, strength, and endurance. I felt proud of my body and what it could do for the first time in my life. Roller derby helped me love my body and exorcise some of my body image demons.

My confidence in life was always limited to certain environments and contexts. Roller derby helped me develop a confidence I could carry everywhere. I started learning to reject unhealthy messages, and to take care of me for the first time. I learned how to say Enough!

In roller derby, life was divided into two-minute jams. Life went the same direction. Only certain hits were permitted. In roller derby, life made sense.

Then migraines happened. And we lost our practice space. And I lost derby for a while.

It’s been a slow, tedious process as I learn to live with pain. I am relearning what I can eat, and in what quantities. I’m learning how much sleep I need on school nights, on weekends, and when I’m in recovery mode. I’m learning what kinds of activities are possible, particularly exercise.

In September, I met with my graduate advising committee to go over my degree plan. The meeting was on the fourth floor of the Education building; I decided to take the stairs. By the time I reached the fourth floor, I could feel my pulse in my scalp. My head pounded; I could feel the blood pressing against each blood vessel in my brain. That was the last time I exerted myself for four months.

I skated only three times in 2014. When school started in August, my migraines hit me in successive waves. I could not exercise. I became (even more) depressed. In October, I started a trigger-free diet because I was desperate to make the pain go away; even if I’d been able to physically exercise, I couldn’t shove enough calories into my facehole to support the exertion.

I missed skating. I missed my derby sisters. I missed feeling strong, accomplished, challenged, and sweaty. I missed hitting people. In a leap of faith, I signed up for skate camp. Skate camp is designed for newbie skaters, or for skaters who do not have experience with derby. My derby wife and I have derby experience, but we were very out of practice. We wanted to start over right; we signed up together.

As skate camp neared, I was excited: 2015 was going to be my comeback year.

As skate camp neared, I was nervous; nay, I was scared. As long as I didn’t try skating, I could always theoretically skate. If I tried and failed, it was one more thing the migraines took from me. This was my Schrodinger’s Cat…on wheels. Something I’ve learned in 12-Step is to ask for help, so I told my derby wife I was scared. She told me we would go as slow as we needed to, and that my legs would be fine. I love her.

The first day arrived. I ate a solid meal, picked up my bestie, and drove to the rink. My skills were intact along with my muscle memory. I was a little wobbly, but as soon as wheel touched track, I knew I was home. I skated the full two hours. I felt victorious.

Yesterday, I went to skate camp again. I skated for the first hour of drills. A piece of velcro in my helmet irritated my scalp. It felt huge. That should have been a sign; I obsessed over it the whole time I was skating. During our timed lap drill, I felt that familiar pulse-in-the-scalp sensation, accompanied by flashing lights. I coasted to a stop and sat against the wall.

As the time wound down, my derby wife met her goal for number of laps around the track. Yesterday was not my day; yesterday was for her. She had her own health journey a few years ago, and I can recognize how far she’s come. I’ll get there, just not today. Bouncing back isn’t turning out to be very bouncy. My brain and body have to relearn to communicate. I need to determine how far I can push myself, and when.

The track still feels like home. When I’m rolling, my legs remember. My hips remember. My brain wants to remember. I felt like Dory yesterday. My sister has called me Doris for years. Many years. When Finding Nemo came out, she thought Dory was the perfect addendum to the Doris nickname. It seems so much more fitting on migraine days. And yesterday, as I watched the fresh meat skate around the track as hard as they could for five minutes, while I tried to will my heart rate down and my head back to normal, I teared up as her words echoed in my ears:

 I remember it, I do. It’s there, I know it is, because when I look at you, I can feel it. And-and I look at you, and I… I’m home.[close to tears] Please… I don’t want that to go away. I don’t want to forget.

Memory Foam

This weekend, after three weeks on a new medication and naught but auras and some twingy left-side non-happenings to report, I triggered a migraine.

Three weeks was my new record, besting the the previous record of nine days set in October 2014. The previous previous record is unknown to me, as migraines have a way of bleeding in to one another and distorting time and space. My migraines are a TARDIS: they are but a relative dimension in space (and time), and they’re bigger on the inside. I’m not sure which incarnation they are at this point, but I know my TARDIS-brain has gone through several Doctors (literally and figuratively).

I become very stream-of-consciousnessy when I descend into a migraine. My anxiety heightens. My auditory processing slows; I say, “What??” a lot. I try to eat all the starches.

The trigger this time? Nightshades. I’m almost positive. I have been on a restrictive diet (affectionately dubbed BlandFest) for three-and-a-half months that eliminates all (and I really do mean ALL) potential migraine triggers, and then adds them back one at a time and assesses my symptoms for 72 hours. It never takes 72 hours. It usually takes 30 minutes. At most, it takes 4 hours, at least for single-ingestion triggers. Butter, and raisins, and dried plums all triggered me within 30 minutes, but required upwards of 7 days to quell. I have not been eager to add back many foods when the consequence of a poor choice means a minimum of a week’s worth of time travel and excruciating pain.

Potatoes came back “clean.” Tomatoes, too. Both belong to the same botanical family known as nightshades, which are inflammatory to some chronic conditions. I have friends with fibromyalgia and arthritis and neuropathy who can’t eat tomatoes or peppers because it causes actual physical pain. Well, on Friday, I ate potatoes and tomatoes and peppers in the same day. I should have just gone for the inflammation Connect Four with eggplant at that rate. Add that to the List of Bad Choices Danielle Made in 2015. I spent the rest of the weekend feeling like I was trying to claw and swim my way up through fog made of memory foam. I choose this image carefully, as there are small bits of the weekend missing from my recall. That’s my best analogy for fighting an impending migraine. What I usually call “head down and power through” is a very concerted effort to push back and keep my head above the choking, smothering, formless void of mattress that beckons me to carb-load and take an 18-hour nap.

So nightshades are a cumulative trigger. Good to know. I now have to work a full week with a migraine. And nobody likes Migraine Mondays. I’ll likely post on this later this week, as chronic conditions like migraines, anxiety, depression (and the above mentioned fibromyalgia, arthritis, neuropathy) are invisible disabilities that are misunderstood by almost everyone. And since I’m not a fan of ranking and grading disabilities (because intersectional feminism should be about tearing down all the hierarchies!), I’d like to do my part to spread understanding for the kinds of accessibility issues we migraineurs face. And what the people in our lives can do to help. Because when I’m in one, I don’t always know what I need, but when I get it, I can’t believe how much it helps my quality of life.

Now, if you’ll excuse me, I have some Doctor’s instructions to follow.