Linky Goodness

Hey, there's a decent article in the NY Times about migraines and care. Also, I really enjoyed these videos from Let's Talk Pain, I just wish there were captions.

But I always wish there were captions. So there's this link: A Letter for your Toolbox: How to ask for transcripts and subtitles. I'm thinking it will come in handy.

And just for fun, here's a few tabs that have been living in my open browser for the past week: I've been watching Farscape on youtube, and it is a fabulous show if you are into sci-fi/comedy/drama/awesomeness. Also, I've been taking some free online classes over here.

Enjoy!


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Accommodations

Dave at Rolling Around in my Head wrote a post about an accessibility issue he had in a ridiculous situation, that really opened my eyes my bit. And then, over at Migraine Puppet there's a piece that addresses a similar issue: the importance of educating others about your needs. And then there was the eloquent and gorgeously articulate article by meloukhia over at FWD that explores the idea of good cripples vs bad ones and how accommodations are not special treatment. All of these perspectives got me thinking about what accommodations I require to be comfortable and who expects them and who ignores them and how most of us are blissfully ignorant of others' needs until it hits painfully close to home.

Even before the headaches, I'd get invited to someone's house for dinner, and there would be issues. I'd warn them ahead of time that I'm largely a vegetarian. But regardless of how often some people had been reminded, I can't say how many times I've arrived at someone's house, sat at their table, spread the napkin over my lap and gotten ready to tuck in... only to discover chicken bits in the rice, and a roast, and bacon in the green beans. Everyone looks around awkwardly. I eat bread and smile politely while inwardly rolling my eyes and yelling at everyone. Honestly, I don't get it. Did they forget? Do they expect me to eat meat as an exception? Was it punishment for being high-maintenance? Why invite someone to your home as a guest, and then starve them? I have learned to offer to bring a dish, something for everyone but mostly for me and my "special needs". Even if it is declined, often I'll bring a little something anyway, it's saved me more times than not. ("We made the mashed potatoes with chicken stock. I hope that's okay!" or "Oh yeah, there's meat in that spaghetti sauce. Oh, you'll be fine!") I have learned to accommodate myself.

Now that I have this neurological storm happening in my head at all times, I have even more special needs. But these needs aren't self-inflicted, like the dietary choices I've made. And being without the "special treatment" doesn't result in a meal of bread, it results in pain. So when others are stubbornly unaccommodating of these needs, I am not as polite as I used to be. Here is a transcript of an ACTUAL CONVERSATION I've had with someone "close" to me:


Me: Hey, that's loud. Can you turn it down?

Them: That's not loud! You used to like music. You should hear it when you're not here.

Me: Yeah, it's still loud and is hurting my head, can you turn it down? Or, better yet, off?

Them: Um, really? (Huffily moves to turn it down, but just the tiniest bit.)

Me: More?

Them: (scowling)

Me: Either you turn it off or I leave. Pick one.


I have this conversation ALL THE TIME. Or similar versions of it. I don't feel like I am asking a lot. I put a lot of thought and work into not having to ask others for help. That's why I wear earplugs and sunglasses and a hat and I bring an umbrella, some tiger balm, a scarf and gloves, several medications, and a bottle of water everywhere I go. But, asking someone to turn down the television or turn off the lights or to back off the drakkar noir or to simply tolerate my unabomber costume in public without constantly mocking me is apparently asking a lot because the DRAMA. I. START. you wouldn't believe. And I really am a nice person. I know how to say please and thank you and smile and look humble while asking a favor. I get social niceties and how I FOREVER OWE YOU ONE because of that time we didn't have the radio on in the car. It was such an inconvenience, I know.

Ahem. Changing the subject...

I went to Denny's earlier this week with a friend. I don't get out a lot. This dinner out is sometimes my only social activity, besides visiting my parents. If more than a month has passed since my last venture, I force myself to this dinner, whether I feel okay or not. It's one of my few last shreds of normalcy, spending a late night at a crappy restaurant talking over pancakes. It is vitally important to me. So when we went there this week, and our visit was cut short by a visit from a perfume drenched hostess, I was *bummed*. I said nothing to her at the time, I just sprinted out of there like I was on fire while my friend paid the bill. I ran into an employee outside, one that we frequently laugh and joke with, and couldn't help but burst out with, "The hostess in there is wearing SO MUCH cologne!" I said it lightly, but pretty dramatically, still a little high on the adrenaline of my rapid escape. She laughed uncomfortably, as one does when put in an awkward semi-friend/semi-customer service issue and asked if it gave me a headache. I paused and said yes, it did. I'm not sure if she knows about my head specifically or if she was just commenting on a normal side effect of exposure to toxic smells. I didn't want to get into it. And I certainly didn't want to put her on the spot, as the probable subordinate of the scented lady and a sort-of buddy to us. So, I smiled and waved as we got into the car and mentioned to my friend that I might write an email.

I got home and didn't. Several days passed and I didn't. Why not? I didn't want to start trouble. I like the restaurant and the employees and I am worried that somehow my name would be on the complaint and they wouldn't like me anymore. I KNOW, ridiculous, right? First of all, this Denny's is not my friend. I can go somewhere else if I have to. I might even like it better somewhere else. I've oddly attached to the idea of the restaurant as a place of safety, a place to feel young and silly and frivolous with my friends again. Second, I'm not the one starting trouble. I'm the tattler. I didn't wear a gallon of perfume and then go work in food service. I was merely offended by the person who did. This brought me to my final conclusion, and the push I needed to write a detailed note to the PTB at Denny's: I'm not the only one who doesn't want to smell cologne while I'm eating. I don't know what the ratio is of offended to non-offended people, but I am this close to convincing myself that I am a kind of freedom fighter, liberating us all from the oppression of other people's heavily scented insecurities, at least during mealtimes. Like Che. Or Mandela.

So, I sent the email. We'll see what happens, if anything.

Anyway, my accommodations are weird, by most standards, and I understand that. That's why I usually hold the yelling in until I get here. Sometimes, though, I feel like I am accommodating other people's ignorance, and that's becoming less okay with me.


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Dissociation

I brought it up in my last post, and can't stop thinking about it. Dissociation is an extremely useful survival tool for those in chronic pain. I'm just not sure where to draw the line.

I want to be a participant in my life. I want to meet people, and go places, and eat and drink and make bad decisions and maybe a few good ones. But my life, the way it is now, is not really living.

I was once accused by a doctor of hiding from the world. He was right. Not about the why; he thought I was having somatic pain in response to anxiety and fear, totally missing that I was actually anxious and fearful from all the, you know, pain. So, yes, I use my earplugs and sunglasses and hats as a shield against anything and everybody, a way to keep it all out. I have a smartphone, a laptop, a television, an ancient gameboy and a thousand books to take my mind away from the pain and seclusion. Visualization and self-hypnosis are also very helpful, if I can find the focus. And even if I can't form a coherent stream of thought, I can usually get lost in om, or a singular thought, like my brother's smile or that vacation we took a few years ago. In a pinch, I have a few drugs that help me waft gently away from the pain, giggly and light. It's escapism. Mostly I know it's a survival skill, distancing myself from the pain. But when I think about it, I start to wonder if it's healthy to be living this much in my head. What's the difference between imaginative coping and dissociative depression?

And I have been depressed lately, I can't deny it anymore. I just haven't decided yet what I'm going to do about it. I'm taking positive steps in my life to find small happinesses, I'm just not sure if I want to explore the world of anti-depressants, herbal remedies, if I want to keep doing this on my own or if I want to call in a professional. Until I figure it out, this is my therapy.




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Lately

My brain has stopped. I keep trying to write, and then deleting it all. We've been busy lately. There was a big emergency storage-emptying, which led to an extremely cluttered house with pathways of frustration and toe-stubbing. This state of disarray sent my mind into a stressed out tizzy, which has of course, left my head wide open to any little stimulus that wants to come along and stab me in the eyeball. Then there was Christmas, which was fulfilling to my soul, but exhausting on my body. It wiped me out, as was expected, and I hardly moved for a week, which seemed a little dramatic. As soon as I started feeling human again, we had an emergency house-cleaning that lasted three days and left me feeling drained, irritable, strung out, sore, a little crazed and relieved. The last because FINALLY my house isn't disgusting and embarrassing. My head feels clearer. It bothers me a little how much it bothered me.


Thanks to a random link on my Google Alerts, I've realized that I've been disassociating, or dissociating (I'm confused), and have been since I was very young. It's a weird coping mechanism that I've always been aware of but only now have a name for. When my head gets bad, or, you know, I'm having an uncomfortable bowel movement or something, I totally zone out. I'm gone; can't hear, don't see, I'm just thinking and I'm somewhere so far removed from whatever triggered me that I often lose time. In my research on this subject I've learned that some people who exhibit this behavior have alter personalities who step in during the primary's absence. I do not. No one else takes over, I am in total control of it and I still only have the one personality, I'm just not as present. I wonder how common this is in migraineurs, or any chronic pain patient.


The neurologist at my local poor people hospital has now canceled on me three times in a row, with a month wait in between rescheduled appointments. It's irritating, but since I don't really believe anyone is going to help me anyway, I kind of feel like they saved me another wasted trip to another crappy doctor. I'm just trying to focus on what is good. I'm lucky to have an advocate to rage out on the futility of the american medical system for me. I'll be over here disassociating.

(That was supposed to be funny. I'm worried it'll come off sad. I refuse to type an emoticon at the end of the sentence to affirm my attempt at humor, though. I've decided that I use them too much. Instead, I will now be typing out long explanatory paragraphs to ensure that my intention is understood.) :)

I think I am too tired to be writing anything coherently. My birthday is in two days. I was hoping to get away with ignoring it, but apparently there is going to be a dinner. I don't want to seem ungrateful, but... poor me, people around me love me enough to want to celebrate my birthday even though the celebration is going to make me wish I hadn't been born, cause of the head pain, you know, but it's just a few hours and I have to just suck it up because it'd hurt everyone's feelings if I didn't go. This is why my head hurts all the time. Not really.

Disclaimer: Half of this entry was written while very, very tired. I would just delete it normally, but I've been doing that too much lately. Besides, I think it's funny.

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Positive Changes

It's been a long time since I felt inspired to make a new year's resolution. I'm kind of against them entirely. It feels forced and manipulated, like valentine's day. We managed to make it through the holidays, we probably gained a few pounds and ran up some more debt. Then, we stay up late, drink copious amount of liquor and make slurred, empty promises of fitness regimens and spending time with our families. Then we wake up the next morning hung over and bleary, and go back to real life, where unused gym memberships and grandparents grow dusty in the back of our minds.

So, instead of resolutions for this year, I offer a list of positive changes I made in my life last year:

1. Started using less irritants and more natural products on myself and in my home. My nose is super sensitive now, which drove me to seek out alternative ways of cleaning my home, my clothes, my house and myself. Baking soda is the best stuff on earth, with vinegar coming up a close second.

2. Had a prolific container garden, some of which is overwintering happily in my bedroom bay window. I started the garden because I felt like I needed a hobby, being stuck at home all the time with the television. And the garden inspired me to take on cooking as a new hobby, too, since I had so many fresh ingredients growing on my front steps.

3. Started writing again. I hadn't written a word recreationally in years when I started up this blog. I didn't feel like I had anything of worth to say. I still debate that, in my head, whether my words mean anything in the vastness of the internet. They probably don't, for the most part. And that's cool. Writing helps me sort through the garbage to find the meaning, organize my thoughts, and practice being self-aware without being self-obsessed.

4. Found acceptance.

5. Bought a dishwasher. And a treadmill. Both for crazy cheap. The dishwasher has reduced our cleanliness fights dramatically, and has saved me countless spoons in labor and aggravation. The treadmill gives me no excuse not to exercise.

6. Green smoothies. Good nutrition is really important. That sounds obvious, but it's so easy to take it for granted. I feel so much better when I eat mostly fruits and veggies. It's a shame that our culture is so fast food oriented, it's doing terrible things to us, our bodies and our personalities. Besides, spinach, ginger, lemon juice, soymilk and banana taste really good when they are all blended up together with some ice.

7. I love my neti pot. Especially now that it's winter and the air is so dry that my lips peel if I'm not careful. The cold, dry air irritates my sinuses and royally pisses off my head and the only thing that has soothed it was a refreshing warm water irrigation. It feels much better than it sounds.

I just noticed that all of these changes came about because of my head. Way to play into the silver lining cliche, HEAD.

Here's to new possibilities, and being right with oneself. Happy new year.
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