1/16/2011

Blog Gems: An Event, Broadly Interpreted



It's time for Jen's Blog Gems, and this week the prompt is to choose an event in our life. I've chosen a post I called Cat pee and watered down lemonade because it is about a specific event, an afternoon spent trying to figure out why everything, well, you'll see when you read it. I've posted it here for your convenience and so that I can update, since this is from July 2009, and this is a far too frequent event in my life. 


....
Cat pee and watered down lemonade
No, they don't taste the same. I don't think so, anyway. But I bet the title caught your attention.

I get migraines. I know, lots of us do. I used to get only ocular ones. They were cool; my eyes would go wonky on me and I'd see zig zags of white or squiggles or see blank patches in my field of vision. No head pain, or anything, just a couple hours of weird vision that made it challenging to do things, but then things went back to normal. No major inconvenience.

About five years ago, the migraines moved from solely ocular to classic migraines, and lots of them. Few of them put me in my bed and completely ruined my day, although some did. Most just made my day more difficult to wade through because of the pain, nausea and bathroom trips. And then fluorescents became a trigger, and I wore for a couple years visors or ball caps and sun glasses whenever I was under the lights. We went through all the classes of preventative meds, though not all of the possible drugs, to curb the migraines, but either the meds didn't help, seriously hurt (we had a summer trying to figure out why my heart rate and blood pressure kept tanking -- bye bye beta blockers), or had significant enough side effects that I ended up resorting to B2, CoQ-10, and Magnesium, which helped some.

A year ago, though, my doctor and I tried one more preventative, a low dose buspar, and it was the right thing. It works well enough without any significant side effects that fluorescents aren't a problem, and I was able to shed the glasses and hats, which made teaching so much more satisfying. And my migraines went from 2 to 3 times a week over the last year to once or twice a month. They no longer dominate my life. They are minor inconveniences and once again occasionally intellectually challenging trips on the wonders of the mind.

A couple years ago, my aura also switched from just ocular to olfactory. I've had migraines where everything tasted like scrambled eggs, or smelled like shrimp. Yesterday's migraine was primarily olfactory. Minor pain, relatively, just everything smelled and tasted weird.

Half the morning I spent asking my kids and husband if they smelled cat pee. I smelled it everywhere. After returning home from a visit to a friend and her son at the hospital, I finally realized what was making the house smell like cat pee to me. I had lit a sandalwood candle in the morning (my favorite scent and one that doesn't smell like cat pee at all), and when I walked in the door, I smelled cat pee. I went and sniffed the candle. Cat pee. Ahhh. At this point, I was four hours into the migraine. Fortunately, the pain never got significant. But hour six into it and the perfectly good unflavored bottled water I was drinking took on a vaguely sweet and lemony taste, which my husband tasted and assured me was good old water with no taste.

So, there you have it, cat pee and watered down lemonade.

:-)
...
In December 2009, I stopped the low dose Buspar, and my migraines returned full-force, although I've refused the sunglasses, the visors, or to live in darkness, although fluorescents continue to be a problem. I've written over the months, periodically, about the migraines, so that if you're a regular reader, you know my worst days are Mondays and Fridays, where I pretty regularly get a migraine, but I don't always talk about how they'll stretch through Tuesdays, how the Friday ones may last into the weekend. Most aren't crippling, just difficult to work through. Some, though, are and put me in bed. Done. 

Last week I threw in the towel and asked to be put back on Buspar. I had stopped taking it because of dizziness issues and concerns over cognitive dulling, but the migraines were beginning to control me again, rather than the other way around, and I have enough other health issues to deal with that if I can get this back under control, it's worth the price.

The best piece I've ever read, if you've not dealt with migraines personally, is by Joan Didion called "In Bed." 

Didion writes:
"We have reached a certain understanding, my migraine and I. It never comes when I am in real trouble. Tell me that my house is burned down, my husband has left me, that there is gunfighting in the streets and panic in the banks, and I will not respond by getting a headache. It comes instead when I am fighting not an open but a guerrilla war with my own life, during weeks of small household confusions, lost laundry, unhappy help, canceled appointments, on days when the telephone rings too much and I get no work done and the wind is coming up. On days like that my friend comes uninvited."
...
There are things we live with, events that are not singular, that come to shape us, define us, if not by our intent, certainly by default. It may not be all of us, our entire identity, but it is a large part of what we move through. At times, these swiftly flowing waters we must wade through, that some call migraine, that others call diabetes, or fibromyalgia, or heart disease, or MS, or some other chronic ailment or condition (or combination of) take our strength, our fortitude, our good cheer, and drain us, leave us struggling against the sudden riptides the swirling, speeding waters form. They all leave their mark on us, whether we'd have it so or not. And some of us don't win the battle of continuing to ford against the stream. Some of us surrender, but it is not zen to let go and allow the water to carry us away. It is capitulation and surrender and there is no victory there, no way to say that we shaped the situation and made it, rather than letting it make us. 

We cannot always move past, put to rest, beat these often invisible invaders to our health. Some things we must learn to live with, and as we age, we add more and more speed to those waters we all must push our way through. And we feel it keenly as an insult, when our bodies, our brains, fail us, betray us. And each insult works on us, carving us into a new and hopefully better person. Gods, I hope so. And on those days I am sure I'm not winning the carving battle or the waters metaphor (and I have literally waded through flooding waters, the current sucking at my legs and threatening my footing), I remember Joseph Campbell and one of his favorite metaphors: Are you the lightbulb, the vehicle of consciousness, or are you the light, the consciousness itself?

I fear that I am both, and that the consciousness without the vehicle has no mechanism to be transmitted or recognized. And I hope to hell I'm not a five watt-er, if ya ken me, and if you've ever seen The Brave Little Toaster, you get my reference. :-) 

12 comments:

Elizabeth said...

Wow -- a very intense post about a very intense subject. Thanks for including the Didion passage -- she is one of my favorite essayists and I'd never read that before. I hope your migraines improve and wonder if you've ever explored Chinese medicine and/or acupuncture. I look forward to reading more of your blog!

K- floortime lite mama said...

i loved your post !!!
hope your migraines imprive
I had never thought of migraines in this way - fascinating
some of what you said reminded me of what SPD must feel like !!!

Life in the House That Asperger Built said...

Sorry you're dealing with this. I get headaches. Bad ones. I don't know if they're migraines, but they do sometimes last for days. So I feel you there.

Also, I live everyday, rain or shine with a sharp, stabbing pain that starts in my lower right side and goes all the way down my hip. Every.day. For the last 2 years.

I don't ever talk about it anymore. Most of the people in my life who knew I had this problem, have long since forgotten and think it's done with. I tried the pain clinic, and the shots..that's was a particularly torturous hell I refuse to revisit. Regular pain relievers don't help. Regular exercise does, but it only helps to minimize, not eliminate.

I'm not sure if that makes me a light bulb, consciousness, or just a dumbass. But I don't complain. It's just not something I do. And so goes another day. I was just thinking yesterday, that I'm not sure I remember what life was like without pain, and I'm not sure I ever will.

All that as a way to commiserate. I love you Hon. Sorry your headaches are back, but glad you're taking the pill and feeling better.

TherExtras said...

Your story was very meaningful for me. At the same time, I'm unwilling to share details. At the same time, my blog gem contribution is about medical care after our cat bit me.

I highly recommend, for Life in the House and anyone with pain the book: Overcoming Back and Neck Pain by Lisa Morrone, PT.

Be well, Friend, Barbara

kathleen said...

I'm hoping this works!! That was a great piece(Didion) and I have shared it with other migraine sufferers ever since you gave it to me..:)
The catch phrase was toxcik...hhmmmm..hee!

aspergirlmaybe said...

After just one experience with a three-week long, migraine-like headache that turned out to be some type of infection, I can only say how sorry I am that you have to deal with this in your life.

I have a close co-worker who has frequent migraines, in addition to some other health issues, and I know she is in some amount of pain a lot of the time. I'm amazed at her (and your) strength to battle this painful issue.

Becca said...

Wow, what a powerful blog post. I cannot even begin to imagine what you go through. I am in shock at the number of people who are not helped 100% by medicine. I never knew that about migraines until recently!

D. S. Walker said...

Kim,
I hope the medication helps again and you soon feel better.
Aloha,
Sue

KWombles said...

@Elizabeth, it seems even when I don’t mean to, I pick intense subjects for these blog gems. :-)I’m going to make people think I’m intense (ah, I am, I fear). The link on Didion will give you her entire essay on it; I picked the part of her essay where she’s come to a kind of truce because that’s where I relate. Thank you for the well wishes.

@K-, thanks. Ah, yeah, I’d never thought of it like that, but yes, SPD might feel like that. In a way, migraines with auras really are disordered sensory processing.

@Laura, thanks for sharing your situation. Yes, chronic pain gets very wearying, and it’s something we carry fairly quietly because how many times a day can you say you hurt before people tune you out? My thesis was on chronic pain, adaptive coping and satisfaction with life. The search to find a way to accommodate chronic pain without sacrificing quality of life and happiness is really important to me. If we can’t eliminate pain, how do we remove suffering? Some days are easier than others, but framing the pain (and the migraines) so that they do not dominate what I do has been my way. Seems you’ve found that, too. Hee, I’m still giggling over “I'm not sure if that makes me a light bulb, consciousness, or just a dumbass.” Campbell always went on to say that the failing of the body let us identify with the light, with the consciousness, and separate from the vehicle, the body. :-) Love you, too, and appreciate you sharing your pain issue.

@Barbara, thanks. I’ll be over in a bit to read your blog gem.

@kathleen, hee, awesome catch phrase. I sometimes wonder if the gremlins in the computer cackle when deciding them (imagination is fun!).
@aspergirlmaybe, thanks. Ideally it becomes background noise or the atmosphere that you simply move through. Ideally. Maybe someday they’ll have a good fix to all the chronic issues people must face.

@Becca, one of the worst things about our society, with all these medication ads, is the promotion of the idea that all conditions can be 100% taken care of with a pill and you’ll be right as rain. One of the important things we can imprint on our children is that some things must be lived with and endured. I think athletes understand that much better, actually, since they have to live with injuries, and if they compete enough, chronic pain conditions.

@Sue, thank you. :-)

Diane said...

Hi, Kim.

I'm sorry you've had to live with this - as if life isn't challenging enough. And speaking as someone who has had to deal with an extended cat pee problem in the house before, nobody should have to smell that all day :)

I give you a lot of credit for managing as well as you have and still accomplishing so much. When I am in any kind of serious pain, it takes over my day bit by bit. Despite my best intentions, I am not the person I want to be. I get tougher as I get older, and I can push past the pain to get things done, but the energy that it takes to do that wears me out and chips away and my patience and good humor until not much is left.

The only good I've seen come out of any acute or chronic pain issues with which I've had to deal - the current one being some intense foot pain that's gone on since May and is only finally showing signs of serious improvement - is that I seem to notice the pain of those around me a bit more. I'm amazed since this happened how many people I see limping in one way or another as I look around me every day. People right in front of me experiencing significant pain every day, but somehow I wasn't picking up on it on my own when it wasn't specifically pointed out to me.

A friend of ours whom we don't see often spends a lot of his time in a wheelchair because of some nerve damage to his spine. Sometimes he also walks with a cane, but it takes a lot out of him. We shared a nice dinner with him and some mutual friends from high school and college recently, and then went to a park so the kids could play while we talked. It was only after a few minutes of standing near the parking lot that it occurred to me to suggest we make our way to a nearby bench. Our friend was clearly getting uncomfortable standing for so long, but he wasn't yet in enough pain to say anything. We all should have been paying more attention, but since we weren't used to dealing with his situation, we just didn't think about it. He seemed grateful I said something before he had to do so.

I wonder how many people around me every day are in less noticeable kinds of pain and meeting the challenges of their day without me even realizing. I hope realizing that we often don't see the burdens that another person is carrying helps me to be a little more patient and forgiving.

KWombles said...

Hi Diane,

Wonderful comment; your last paragraph really resonates. So many chronic health conditions really are invisible, and unless we engage in physical pain displays to telegraph the pain or vocalize, it slips beneath the radar. We fail to consider that just as we keep most of our internal reality (both mental and physical) private and to ourselves, so too do most people. It's humbling to realize how much of ourselves we may never share with others and how much we many never know about others, especially the people we care most for.

Jen said...

I found this really interesting. I get migraines on occasion and they often do send me to bed (and I have an extremely HIGH pain threshold apparently) but it never dawned on me that when my sense of taste goes funny that it might be another form of migraine!! I must pay more attention, I must take the time to pay more attention!! Thanks Kim