Pillbugging

I made it through the holidays with the usual amount of joy and pain. I'm lucky to have a loving family, but the migraines didn't make anything easy.

This last year has been a year of self-protection and rebuilding. I'm trying to be better about recognizing where I'm self-defeating and one of those ways I'm working on is my tendency to pillbug.

I think I made this term up, at least I can't recall hearing it used like this before, and it came to me on one particularly migrainy morning when I just couldn't seem to get myself out of bed. Pillbugs, or potato bugs, are those small armored-looking insects that roll themselves into a tight ball as a defensive mechanism. And that's what I was doing that morning, tucked snug in a shell of my own making, hidden and still, waiting for the danger to pass. I should have gotten some water, medicated, stretched, listened to a little music; I was feeling bad but a little self care would likely make me feel better. Instead, I lay under the blankets, curled up and letting my mind drift away from the pain and nausea. I lay for nearly an hour before I came back to myself. Once I wrested my achy body from my cozy bubble, got up and did a few of the things I knew would help, I loosened up a little and could begin my very quiet day.

Now that I have a name for my pillbugging tendencies, I seem to be recognizing it earlier and doing it less! So that's good.



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Coming Back

Ok, I seem to be regaining my balance for the moment, so let's stop to catch up, shall we?

I did, indeed, cut my hours at the dog sitters', and after the initial upset I felt at losing something that felt important to me (a sort-of livelihood, people counting on me, awesome dog interaction all the time), I am realizing that I am slowly regaining the energy to do things around the house, and I went on my first hike in two weeks this morning.

I'm really excited about some wool socks I made on a whim yesterday, too. I haven't sewn in ages beyond basic repairs and was feeling super down about my ability, but then I was inspired to demolish an old wool sweater and turn it into the warmest socks I've ever had on my feet. They look completely wonky, as if I perhaps made them with one eye closed and a hand tied behind my back, but they fit and are comfortable and did I mention warm? Warm.

My head continues to torture me every day, and it's been particularly sensitive the past few weeks, I'm guessing due to the weather finally changing. I'm nauseated a lot, but since I haven't been in a car in a while, it's staying under control with minimal ginger. Those anti-nausea pills were a miracle for a while there, but now I'm kind of afraid to take them, since I only recently got my pooper running regularly again. I did get some fiber powder to use in conjunction with it, but I'm still not rushing for it unless I have to. Next car ride, probably.

The IC is still here. I've read anecdotes of people having full remissions but I don't see that happening for me anytime soon. I'm not in an active flare, and I can currently get away with eating very modest amounts of acidic foods and spices, but there are some things that still trigger pain, like onions, caffeine, or tight pants. I can't complain about it though, considering how ridiculously restricted my diet was this time last year, and oh boo hoo I have to wear stretchy pants for the rest of my life, what ever will I do with all this comfort?

Though, it's funny navigating life as a person who doesn't drink alcohol or caffeine, other people's addictions become very apparent very quickly as they loudly proclaim their inability to EVER go without [drug of choice] and how it's the only reason they get through [minorly unpleasant life experience]. Actually, meat eaters do this with me too, but not smokers, interestingly. I think smoking has just enough stigma now that peer pressure isn't cool anymore. I'm still a jerk (apparently) for telling people not to smoke around me, but they are also a jerk for spreading their toxic clouds of cancer all over, so it's less awkward I think. For me, at least, haha.

And I've joined a forum or two to try and forge more connections in this world. I've been too isolated, so I've got to make social interaction part of my self-care routine, whether my introverted self likes it or not.

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Consequences and Flowers

I spent several hours dog-sitting yesterday and boy am I paying for it.

I started feeling the consequences while I was still there. The sun was suddenly so blinding I couldn't keep my eyes open and they watered and stung until I moved to the shade. I was having brief dizzy spells. My nausea kicked up. I was yawning.

I kept it together until after I was back home, and I suspect that the walk downhill didn't help matters at all. Once home, I grew colder and colder, until I was in my robe and under a blanket and still feeling like my hands and feet were blocks of ice. The weather has cooled a little, but it's not at all cold enough for this reaction, which has continued into today. No, this is definitely a migraine chill.

Additionally, I'm exhausted and had a nightmare last night that my honey woke me from because I was yelling and thrashing. I'm so sore this morning, I feel like I was in a boxing match.

So, I'm taking it easy today, though I really want to get outside and garden. The boyfriend surprised me with a few sixers of annuals, and I can't wait to have a spot of color in our yard. We have some native flowers around; teeny, perfect wildflowers, gorgeous irises that grow in clumps and bloom in spurts, and wild roses that are incredibly delicate and lovely but flower so briefly it's easy to miss them entirely. Bright clumps of hardy, commercially created flowers is just what I need right now. I think I will go putter out there for a while. If I wear a hat, and keep warm, and don't strain myself too much, I think it could be a good time.

Update: It was.

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Coping, Not Hoping

My periods have become frightening, and as my latest cycle started, I tried to calm my constitution as well as I could.

To feel more prepared, I spent the first day making menstrual pads from ill-fitting flannel pajamas. It did make me feel better, a little more in control, and now I have several more cloth pads. I love win-wins.

That night I had a vivid dream of nursing my newborn baby. When I woke up, I told my boyfriend about the dream and he asked if the baby was a boy or a girl. I don't know, I said, it didn't matter. I was shattered by the dream, felt absolutely mournful for the baby that was never mine. I curled back up under the covers and cried.

I'm too sick to have babies. My head likes to torture me, and now my uterus might be trying to kill me; but that remains to be seen, it might just be aiming to for grave illness. Actually, my symptoms did improve a bit with the iron supplements and other remedies I threw at it, so that gives me optimism that I won't bleed out before I can get some help from a gyno, at least.

And my migraines have gotten really sharp lately, which may also be period related. I do pretty well coping with the dull and throbbing, but the sharp migraines are a whole other thing. They can easily render me fetal, or turn me into a pacing, panicking ball of distress. I'm keeping the anxiety at bay pretty well though, with various snake oils I've collected over the years, and with meditative techniques. I looked like a woman in labor the other day, I was bent over the bed, rocking and moaning as the pain closed my eyes and brought my head to the sheet. It felt better to move my body as I rested; I can't seem to keep still when these sharp spikes hit, plus I was sort of stretching my back as I rocked. But it was only intermittent rocking, because the nausea shows up for every single one of these parties lately.

However, the cyclical depression I've been experiencing seems to have faded over the last two months, and I'm not sure what I'm doing differently, but I'm relieved for the break.

The IC seems to be under control, I've tolerated moderate amounts of spices and small amounts of acids. I'm definitely still taking it slow, because I really don't want to lose this progress. I can go out to eat again! It feels like a miracle, to have this much freedom in food. Taking the citrus slowly doesn't bother me at all, I'm too busy relishing the lack of urethral pain.

But still, I'm too sick to have babies. That dream really brought it all front and center and it feels like every conversation ends with that conclusion, even if we started at what produce should we get at the store.

If I had more support. My partner is not available for full-time parenting and I can't imagine a financial situation in which he would be. I don't have any family or friends that would be up to co-parenting with me. And dogs are about all I can handle on my own, and let's be real, I need help with them on my bad days, too.

Wanting a child is selfish, sure, but it's also a biological imperative that is difficult to ignore, logic withstanding. If there was a positive trade-off it might be easier, a great career or loads of traveling, but no, just me and my sick.

There's always hope for the future, but I find it difficult to live with hope, at least not too much of it. Hoping can lead to waiting, and of course to major disappointment and maybe sometimes to wish fulfillment, but we chronic migraine people tend to have this for a short while or forever, especially when we're medication resistant, so hope is a thing with feathers that I'd shoot down if I wasn't a vegan.



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A Cookie for Court

My little brother had a birthday. I was almost normal.

He participates in a mock trial club and had a competition on his 18th birthday, which was perfect, because I'd been wanting to see him in action, and I definitely wanted to wish him a happy birthday on the actual day, if I could.

So, we made the (nauseating) drive and I medicated with half a large cookie, even though I had no idea what I was getting into. I was anxious, but it was important to me to try.

There was a huge line outside the building and through the glass windows I could see metal detectors and security checking people and their belongings for dangerous items. We funneled slowly inside and I was horrified to find a huge crowd waiting for the elevators. They were packing us in like sardines and it was not ideal. We looked for stairs, but they were inaccessible (which seems really unsafe, doesn't it?), so we found our way to the end of the line and waited to be mashed in.

I really hope I never have to be in a full elevator again.

We made it to the courtroom and found it packed, but there were two chairs available in the back, which we took gladly. My brother took his turn on the stand early and played his part well, and I was a proud big sister. Those several minutes were glorious as I sat in rapt adoration of the impossibly grown baby I'd seen born 18 years ago. He's such a blessing to me.

The small room became stuffy with the heat of a hundred bodies rather quickly and I wished they would have left the door open. But that's not the way of the courts system, even the mock courts.

Perfume is a steady smack in the face, even when it's subtle, and when there are fifty different combinations of scent in one room, it is not usually a good place for me to be. The uncomfortable chairs, the bright overhead lighting, the shrill edge to some of the more radically pubescent students' voices; I was under assault the entire two hours. But I'd taken that marijuana cookie, so I wasn't nearly as reactive as usual. I was uncomfortable, definitely, but when the usual response to that kind of situation is sobbing pain, I can't complain.

I stuck it out for over two hours, because I'm a saint obviously, and because I needed to be there for my brother, at least once. Even if he didn't need me, it felt really good to be a family member in the audience, to be supportive. It's been so long since I've been able to be there for someone else.

Happy birthday, Bub.



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On the Eve of my 36th Birthday

Tomorrow is my birthday and I'm feeling a little weird about it.

This is the first age that's really hit me in the mortality, and I'm a little uncomfortable with being this close to forty. I mean, I'd be lucky to be 40, and 50, and 110, aging is inevitable, sickness or accident can take any of us at any time, and immortality would be a huge bummer, anyway. But at forty there is absolutely no girlishness left to most women - in truth it disappears for most of us in our early thirties - and by forty, almost every one of us is a grown-ass adult woman without a bone of naivete in our bodies.

Again, this isn't necessarily a bad thing, and I have been really enjoying the confidence that comes with knowing my own mind and not feeling so much pressure to perform femininity in the way younger women are sort of required to. I had some good times in my twenties, and yes, my thirties have definitely been harder to enjoy, but I have definitely lived them, and I'm sure my forties will be nothing but not interesting; but I do wish I had more time.

For example, I'm not quite ready to have kids, but could see it in my future. Unfortunately there's an expiration date looming over my uterus that I suddenly have to be thinking about. I could adopt, of course, but I don't like having my options taken away, when I'm not even done deciding if I want to use them.

So today, the day before my 36th birthday, I've spent some energy in the kitchen and made myself a vegan quiche and a bunch of dolmas, so even if I'm not able to go out tomorrow for the ideal beach and lunch experience, it will still be a relaxed and happy day with plenty of good food to help me appreciate and celebrate my life, however I'm able to live it.


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Self-Indulgence, A Panacea

This has been a trying time for me.

I started this blog to deal with the 16,000 stages of grief that I was going through with the chronic migraines. I detailed my symptoms and treatments, worked out my every thought and emotion about being chronically ill and relatively young, and just as I was starting to feel like I had a real solid grip on living this altered life, the IC got all serious on me, and now I feel like I should start an IC blog, detailing my every thought and emotion, symptom and fear, and how goddamn irritating this diet is and how terrible I am at following it.

I mean, I'm pretty good at it, but if you ever eat anything from a box, jar or can, there's a 99% chance that it violates the IC diet somehow. When my head hurts or I'm depressed, I forget to read labels, and it's practically guaranteed that after I've eaten enough to hurt, I'll remember and find soy lecithin or citric acid or cinnamon. I'm so tired of being in pain.

It doesn't help that I've been waking up with migraines every other morning for the past week, and this morning seems to be a juicy one. I feel a little depressed, but not too bad, because I have two things to hold onto right now, and I'm holding them tight.

1. I decorated for xmas. For the first time in years, I put on some holiday music and slowly set up our wee, two-foot tall tree, decorated it with the tiny ornaments I could hardly remember having, and hung the stockings by the chimney with care. It's a little thing, it only took me an hour or so, but it's the first time that I've decorated my home for christmas, and enjoyed it. I even found a few bells in the ornament bag (a sandwich ziplock lol) and hung one on each of our stockings, so we'll hear if St. Nick puts anything in them.

2. I'm writing a story. I haven't written anything like this ever, so it's exciting and scary and all those emotions we get when we do something we're not sure we can do.

They're little things, but I'm doing them both just for me, and that makes them both feel very indulgent, which I think is good for the soul.

As the wise Donna Meagle says, "Treat. Yo. Self."

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The Sick Has Taken Over

I have been feeling like sheeeeeeeee-it.

The depression and anxiety are totally out of control, until they aren't and I'm nearly fine. It's very much hormonal, and very fucking frustrating.

I usually try to avoid swearing here, but since I haven't been around much, I'm not going to stifle one iota of this writing momentum I'm trying to build up, so if I drop a few fucks, shits, and assholes, well, I guess you're finally getting to know the real me.

I got the enterovirus, or something similarly coughtastic, and it's been mothercracking WEEKS of this shit now and I'm so tired. Actually this is the first day I've felt somewhat normal, singing and dancing while I clear out the MOUNTAIN of dishes in the sink. Now there's just a rolling hill, and I'll tackle that once the precariously piled clean dishes dry in the rack.

My head doesn't appreciate the coughing AT ALL, so that's been miserable too, except I can't medicate because smoking triggers what? COUGHING. SONOFAMONKEY.

Edibles are an option when we have the stuff to make it ourselves, but we haven't for the past few weeks and resorted to store-bought and guess what? It's all either too heavy to gag down while 'graining or inflammatory to my IC, so NO.

The IC has been a dick, too, but that's mostly my fault because in the midst of all the sick I wanted Chinese food so bad I didn't care about the repercussions and ate the hell out of some delicious chow fun and mediocre potstickers. I felt the pain for a week! The hell, urethra, I have no idea what I did to anger the renal gods but they hate me.

I got some bloodwork done, and got the results back but no comment from my doctor yet, so I'm going to share my abnormal results with you and we can all speculate.


Test - my number (what is normal)
Vitamin D - 22 (30-100)
White Blood Cell Count - 3.6 (4.0-11.0 K/uL)
Hemoglobin - 11.8 (12.0-15.5 g/dL)
MCH - 25.8 (27.0-33.0 pg)
Neutrophil - %39 (49.0-74.0%)
Monocyte - %13 (2.0-12.0%)
Abs. Neutrophil - 1.4 (2.0-8.0 K/uL)

So, the internet says these low blood cell counts could just be anemia, which I've had off and on for years, and I suspect being in the midst of the sick has also thrown off some numbers, but then it also suggests cancer, which is so damn rude, but that's what I get for googling instead of emailing my doctor.

So, I started taking vitamins again because I'm still too tired to properly cook for myself every meal, and that might be improving my energy, but it could also be that I'm only having five coughing fits a day instead of 16,000.

I haven't hiked with the puppies in ages, and I really miss working out, so hopefully I'll be able to reclaim that in the next week, but as soon as I feel well enough it'll be time to get my flu shot which knocks me down for several days too. Weeeeee!


At least I'm pooping regularly.







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What is Good

I'm still quite a bit in survival mode right now.

The IC is calming down finally, but now my period has started for another whiz-bang of a pelvic party. Ibuprofen helps with the cramps, but I am chained to the house for the first several days of my periods just for their heaviness, and besides that my head is so, so sensitive, and now I'm finding myself feeling sad and really lonely, so I've decided that I need to focus on what is good.

~*~**~*~A List of What is Good~*~**~*~

Daiya Cheddar (I'm still on the IC diet, and still praising the vegan overlords for the soy-free, dairy-free genius that is this stuff)

Avocado

The hit 90's tv series Charmed, starring Shannen Doherty, Holly Marie Combs, and Alyssa Milano

Pot, which is saving my head, and the bubbler that is saving my lungs

Being able to exercise

Tumblr (I'm starting to lose time, so it may be time to back away)

My boyfriend. Having support is invaluable.

The internet, at large. It is my lifeline, and my major time sucker. Pros and cons.

Tortillas. Everything is better wrapped in a tortilla.

Books. The thing about rereading old favorites is that the book stays the same but sometimes we've changed. The same happens with all kinds of things, but books are so personal to me, it's always surprising to reread something I've read a thousand times and have totally new thoughts about it.

Sleep. Just can't get enough.

A night warm enough to have the windows open and the sound of crickets lulling me to sleep.

Dogs, because they help me live in the moment, and find joy in just being alive.


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Dreaming

I had a dream last night, the first I've remembered in ages. I was on a glass submarine.

The sub was floating at the surface, in dock. We moved past a huge old steamship, and I goggled at the size of it; I could see the entire girth of it from inside my glass sub, and it was astounding. Then, we dove. The waves crashed against the glass, and then the sub was engulfed entirely and I was underwater. It was murky, and ghostly fish passed by too quickly to be identified. Then there was a coral paradise, like Nemo's home, and it was brilliant and dazzling and I was laughing and crying and giddy with the experience, totally unaware that I was dreaming. And this morning, when I remembered the dream in a surprised rush, I told my boyfriend the tale and felt like I was recounting an amazing vacation story.

I haven't felt that kind of joy in a long time. I've had happy moments, I've laughed and had good times, but lately I feel like I have nothing to look forward to, and yesterday those words formed themselves exactly in my mind. Nothing to look forward to. I can't have kids. Going to school feels like it'll never amount to anything. My relationships are all faltering. I'll never be well enough to really be happy or free.

Writing it out, yes, I can see depression talking, but isn't some of it, at least, just being realistic?

I used to feel so secure in the world. I'm so jealous of myself pre-migraines, I had no idea what I had.

I think that submarine was some part of my brain sending up a signal flare, We need to be amazing again! We need to LIVE! I need to listen. I need to find a path. Or make one.


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Getting Out Of My Own Way

So, things are hard.

And they are harder than they should be which tells me that I'm in a funk. If I ever really climbed out of the last one.

I had Big Plans to look forward this last week, which really shook off some of those lingering cobwebs of depression, but even in the midst of excited preparations, there was a campaign being waged in my head to keep me down. "I can't do it," "I'll mess it up," "I'm terrible at it," I shouldn't even bother." I listen to these voices far too much, but in the excitement of these Big Plans, I threw out my negative self-talk and tried the things I knew I would fail at. Annoyingly and happily, I did not fail, and in fact did a much better job than I ever imagined I could.

I read an article over at Captain Awkward this morning, which is what inspired me to even crack open this blog and put some words down, on Breaking the Low Mood Cycle, and it really hit my nail on the head.

So many things are already standing in my way, I certainly don't want to be one of them.

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So, Optimism

Let's the start off with the bad: My head hurts and I'm nauseated and my neck and shoulders are sore and creaky and my eyeballs ache and there are other things, but hey, that's plenty enough isn't it?

I haven't been writing here much lately. I've been feeling like I have to scrimp and save every scrap of energy I have, but it's my own fault because I spend more of it than I should hiking with the dogs almost every day. They say exercise can be addictive, and I can see how that could happen. Dedicating ten to sixty minutes a day to doing some kind of aerobic activity or strength exercises has improved my overall mood, made me stronger, increased my stamina, and improved my self-confidence.

And usually it's hiking, but I've also broken out the Wii fit (which I still kind of hate for it's body-shaming, but I find talking back to the screen with profanities and rude gestures helps) for a little indoor jogging or yoga. I dance to music, especially when I clean the kitchen. I do pushups and situps sometimes.

I'm holding onto a dread that makes my heart heavy, because I'm going to have to stop exercising so frequently eventually, and I'm afraid I'll lose the improvements I've seen in my head. The heat has already been keeping me more inert, and I often feel the urge to do something more with my life than exercise.

I miss school, but I'm still really undecided about the direction I want to go, and frustrated with my limited options as an online student. I've been "working" a few hours a month at the dog sitters up the street, which is pretty much a dream gig for me. It's even on my usual hiking route so I can get myself there most of the time, it's run by really low-key people and populated by awesome dogs and I've grown to consider them and their dogs like an extended pack.

I've struggled to find motivation otherwise. Sewing, gardening, I want the results of both but they both seem impossible right now. The latter for the drought, so I can hardly be blamed for that, however I do take ridiculous hot showers when my body hurts. Forgive me, unless someone rips me out of that blessed heat, when I ache I can not leave until I am blanched. Sewing on the other hand has no barriers besides my own frustration. I just need to make something new.

There was a wedding a few weeks ago, a cousin married his long-time partner. I made it through the ceremony with earplugs, but as soon as we all started filing out of the space they'd reserved for the ceremony and towards the the building in which the reception was to take place, I found myself surrounded by the perfume of a thousand old ladies, which compounded the effects I was already feeling from the sun and wind, the drive there, talking, the loud pre-ceremony music, and the stress of wearing uncomfortable clothes, makeup and heels. I was suddenly feeling quite ill and volatile and because I very much do not want to insult people unnecessarily, especially on a special day, I shut my mouth firmly in a pleasant smile and steered myself towards the parking lot for an early escape. I did try to medicate before ordering my boyfriend/chauffeur to whisk me back to the forest, but there wasn't enough pot in the world to counteract the overstimulation of that wedding.

My favorite part of dressing up always has been the taking it all off because the feeling of ease is so delicious after all that pinching of shoes and scratching of fancy fabrics; I could not wait to get back into my comfortable clothes, so I did that before we were even on the road home. It felt silly to have gone to all that trouble (makeup, hair gel, properly fitting undergarments, lint rolling my nice coat), but of course I intended to at least try to go to the reception, at which sweatpants would have been unacceptable.

The motion sickness seems to be coming back with the warm weather. It eased some for a few months, only getting bad in the car, but now it's a 24/7 struggle not to guzzle ginger ale all day again. I've got to find an alternate, something with a little less hfcs.

I'm dealing with the heat pretty well so far, though we've only really had a few hot days. One day we hit the mid-90s, and I soaked my head no less than four times, drank water and ate fruit like it was my job, and stayed out of the sun totally, only taking the dogs for a short walk under the trees, and I survived pretty well! So, optimism.

And as a final note in this wandering post, I'd like to share that asking for help is something I don't do easily, but it's something I've had to do recently. I'm very afraid of being rejected or laughed at for my feelings and my failings, or of appearing foolish or weak, and I worry that my relationships can't take the strain of my problems and my needs. These fears aren't the worst things that could happen to a person, though, so I'm realizing that maybe it's worth the risk to share my vulnerabilities, especially if it helps me get to a better place. I've got choices to make and I certainly can't do things alone, so I have to hope that those I turn to for help are open. These are murky, uncharted waters and without a map or compass I can only rely on those around me to help me keep moving forward. Wish me luck.



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Quietly Christmasing

The holidays are rapidly approaching and I've figured out a new way to avoid the pain that big gatherings always trigger in my poor, sensitive head: I won't go.

That's right, it only took me 6 1/2 years to sort that out. I've spent the last six christmases in pain, torturing myself to keep up the tradition of full-family-immersion. I couldn't imagine spending christmas any other way because as long as I could remember, that's what the holidays were: family, chaos, food, horseplay, drinking, talking, cookies, laughter, and there may only be thirty-something of us, but when we're all together, the roar of the crowd amplifies upon itself and we all find ourselves shout-conversing during the peakier points of the party.

The last six christmases have been truly miserable for me. I do my best to smile and socialize as much as I can with earplugs in, hat on, and medicated to the brimmmiest of brims, but no matter how precautious I am, it's ALWAYS at least a week of laying around afterwards and often the recuperation lasts until my birthday (two weeks into January), when I am expected to go through the same thing again for the joy of a massive family birthday party (for me and others).

So, this year: NO.

No big family christmas party, and no big birthday party. I will not attend any gathering that hosts more than a handful of people, and I will not hurt myself for the sake of appearances or to fulfill anyone's misguided idea of what the holidays are, particularly my own.

This year, this existentialist atheist will celebrate christmas however seems migraine-appropriate, with my parents on the eve perhaps, or with just my grandparents the weekend after. I will not travel so hard it hurts me, and I will certainly not give the tiniest iota of a shit if some clueless relative thinks I'm rude for taking care of myself.

We also have a cloud over the season as it'll be a year since my partner's mom died. He's sad, and not interested in most christmasy things, but he did watch Die Hard with me, so he'll be ok.

Without the needs and chaos of other people being the center of my solstice-celebrations, I am free to embrace the season however moves me in the moments, and I've been reveling in it in my own, very quiet way. I've acquired a few presents for loved ones, and I'd love to get more if my budget allows. I've been enjoying both christmas music and movies, my favorites this year being nearly any version of Carol of the Bells (oddly, because I always thought it sounded like the soundtrack to a christmas-themed slasher flick) and the Robert Downey Jr/Holly Hunter flick, Home for the Holidays (which is Thanksgiving-themed, but WEV). Pandora's got a decent, but rather repetitive holiday channel, to which I added a little Vince Guaraldi from a Charlie Brown Christmas, the equivalent of a musical shot of eggnog to my soul.

I'm looking forward to having just a few, small gatherings with people I love, and taking time to reflect on the future. Change is constant, and I can't wait to see what comes next.


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It's Always an Adventure

How can I possibly still have symptoms I haven't talked about here? Apparently, migraine is so varied and complex, a person can spend years writing about it and still have new material from which to draw.

I was preparing dinner the other night and a fork happened to scrape along a plate just so, and I got that "nails on a chalkboard" feeling. A shiver runs up my spine, my teeth and jaw go tense, a vibration seems to run through every cell in my body as if I'm being electrocuted, and my head - if it wasn't already up and running - flares in response. The effect can last for several minutes to hours, and can be triggered by almost any scraping noise. Metal, glass, ceramics, rock, even wood; if it hits a certain vibration, I just can't tolerate it. Like motion sickness, this is another sensitivity I've gained with the onset of chronic migraines. For most of my life, it would have been an easily ignorable unpleasant noise, but now, the sound of that fork on the plate hit me so hard I had to sit down for ten minutes, wait for my head to stop ringing.

Loss of coordination is something I know I've talked about before, but not recently. Many of my symptoms wax and wane and being particularly stumbly seems to be coming back. It's funny because my body continues to grow stronger, I'm exercising nearly every day, and my coordination should be improving, if anything. But no, I trip over cracks in the road, veer wildly while trying to walk a straight line, I'm shoulder-checking the door frames, and generally walking into every perfectly visible, large object that happens to be in my path. And I've got the bruises and scratches to prove it. I'm just grateful I've been able to work out so much these past few months, I'm not getting hurt nearly as much, and my injuries are healing much faster than they used to, I can't imagine the world of hurt I'd be in right now if I was as out of shape as I was and falling all over the place.

Another infrequently-mentioned but often-experienced symptom is the chills. More than once this summer, it was more than 90 degrees outside, and migraine had my skin covered in gooseflesh and my feet freezing. Hot tea and a heating pad on a hot summer day? Please and thank you, when I'm migraine-cold I will cut someone for that heating pad.

And then, there are the brand-new symptoms. Yesterday I went to the beach, and it was low-key, but still: the sun, laughing and talking, walking in the sand, sitting in a moving car. I was plummeting straight down migraine-hill on the way home and later that evening, it got weird. I realized it was worse than usual when I kept being stopped in mid-sentence, mid-thought, and mid-movement by not exactly pain, but something certainly disabling and certainly on the right side of my head, near the temple. It hurt, but it wasn't the pain that stopped me, it was like a spasm or as if everything had stopped everywhere else except for this one spot in my head. There was nothing to do but clasp my face and wait it out.

My brain was clearly not working right, so when I saw my boyfriend in pain, I offered him a massage, not even thinking about my already advanced migraine situation. I worked on him, and worked on him, and then looked at my fingers and had the horrifying feeling that they didn't appear shorter because of the way I was kneading into my boyfriend's flesh, they appeared shorter because there was nothing where they disappeared. My logical side was totally weirded out, perfectly aware that the situation was entirely impossible, and maybe I should just stay calm and it would resolve on its own. But the hallucination wouldn't pass and after several seconds, I was having trouble not freaking out. I held my hand in front of my face, seeing the length of my fingers, nails and all, but part of my mind was still so focused on the idea of short fingers, that it was sort of overriding my real vision. I could see both at the same time.

I, of course, started to cry and told my boyfriend that I was having "visual problems". He immediately, bless him, tilted his head so I could see his face, directed me to look at him, and told me it was ok, which was really the best thing he could have done. It took a few minutes for the image to pass, and I still get the heebies just thinking about it.

I slept well last night, but the weird head-pain-spasms started up again this morning, a few hours after getting up, and today has been a struggle. I've managed to feed myself twice (once before it really set in, but I'm still counting it, so nyah), did some homework (slowly, but surely!), and finished up this post, but otherwise, I think today is a wash. Another one lost to the abyss that is migraine.

At this moment, I'm ok with it; migraine's frustrating, annoying, painful, and sometimes scary, but I've made some sort of peace with this ever-present albatross of weird, which makes it easier to endure, somehow. So, I'll be riding it out quietly, like a survivalist in a storm, secure with my knowledge that the migraine will end and I'll still be here. Fingers and all.



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Short Hair

I cut all my hair off again.

We cut it at home, my boyfriend and I, and we're both kind of shocked it came out well. I wrapped an old shower curtain around me, we buzzed the sides and back to an inch and scissor-cut the top into long pixie. I like it very much. Oddly, this short style feels more feminine to me than my long hair did and I actually feel more comfortable with short hair, though I've had hair past my shoulders for 95% of my life.

For a while now, I've been feeling disconnected from my own image. Pictures don't look like me, though I know rationally that they do. Even the face I see in the mirror only resembles my own. She is older, sadder, fatter, uglier, and I feel bad for that woman whenever I catch her image. Her clothes fit badly, her hair is unstyled, and she always looks tired. As a person who has struggled with body image and disordered eating, I've been unsure how to become comfortable with myself again.

But, cutting my hair has helped realign my mind and my body somewhat. I look in the mirror and I'm finally seeing myself again, not just a haggard, sick, fat, old, tired version of myself, but the real me. I mean, I can still see the weight, the exhaustion, how migraines have affected me and how my skin is changing as I'm seeing the first signs of middle age approaching, but it's not all I see. My face is mine again, without all that weight attached to it. Who knew I was just trapped under all that hair?

I do miss elaborate braids and wearing it all fancy, but I haven't been able to wear my hair like that in years anyway, my constant scalp tenderness makes any but the loosest of low ponytails intolerable. Besides, I'm always wearing a hat outside the house, what's the point of styling my hair to just smush it down?

I was hoping to see some migraine benefits from lopping it all off, but no dice. In fact, I've had a tension-like headache around the back of my head ever since we cut it, almost as if my scalp misses the weight.

The reactions I've gotten from other people have been entertaining. My mother hates it, but she always hates my hair short, so part of the fun of cutting it has always been watching her battle against herself to say something nice. She fights the urge to criticize me, and I know it really bothers her that HER mother (my grandma) gives my mom a hard time for straightening her hair, so she recognizes the pattern enough to not want to repeat it. My grandma thinks curls are THE THING and can't imagine why anyone wouldn't want them and makes a comment nearly every time they see each other. Therefore, my mom strives to be supportive of my hair choices, but sometimes makes this pursed-lips disappointed face, sighs, and touches my head like she's wistfully recalling when my hair was past my butt and took up HOURS of every day. I will never have hair that long again, sorry mom.

So, for the success of my new short 'do, I would like to thank the following people: Anne Hathaway and Ginnifer Goodwin for sporting the same style and being photographed from a thousand angles. The hairstylists I used to work for, and their techniques that I copied. Youtube. My boyfriend, for his epic patience. And C, for buzzing her own head and making it look like NBD.

Cutting my hair off was a feminist act, for me. So many people have discouraged me from going short, they said my face would look fatter (oh no!) or I would look like a lesbian (OH NO!), and those people were both assholes and wrong, because going shorter actually frames my face better, and sexuality can not be determined from hair length.

Moral of my story: If you want short hair: cut it. Or pay someone else to, but don't listen to the naysayers. It's hair, worst case: it'll grow back.



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Diversions, Entertainment, and Preoccupations

Self-distraction is the most surprising and valuable survival skill I've developed from dealing with 24/7 migraines.

My favorite, but least used form of distraction is reading. I can't remember not being able to read. I learned at a very young age, and used to compulsively read everything in my sight. Actually, I still do that. But since migraines, my eyes ache when I read for long periods, and I often have trouble focusing on what I'm reading. Because I have to do a fair amount of academic reading for my classes, I've been gravitating towards lighter literary fare and have been relishing the opportunity to read the Sookie Stackhouse books. They are some awesome, fluffy fun.

When my brain won't let me read, but I'm not quite willing to go totally inert in front of the tube, I play me some thinking games! Puzzle, room escape, hidden object, word games, adventure, anything that involves exercising my brain and I'll love it. I play online, free, usually at gamershood.com.

Of course, I spend quite a bit of time without the capability of thinking, and then I turn to tv and movies. I'm still watching TNG, on season 4 now, and on some recent bad days I binge-watched Orange is the New Black and Orphan Black, which are my favorite new shows and I want more episodes now. It's odd that they both start with O and end with Black, makes my brain skip a beat whenever I look at the titles together.

When I'm capable of physical exertion despite my head, I've found therapeutic benefits in cleaning. Our kitchen is full of shelves of boxes and stuff to be sorted from my boyfriend's mom, and I've finally turned back to it this week. I've organized the kitchen stuff and seriously purged my sewing stash, which has been inaccessible since we brought all this crap home. It's still cluttered in there, but I'm finally making progress again, and seeing the results puts my brain in a much happier place. I may go very slowly on this project, but I'll get there.

Clearing out my sewing stash has inspired me to create a few scarves out of old shirts and I even did a little dyeing to save some items from the bin. These were some easy-peasy crafts, fun, not requiring much brain-power or physical exertion and the result of having something new to wear or use at the end of it is such a happy bonus. And even if it doesn't work out, the dye doesn't take or I botched the sewing big time, I get to add it to my out-going donations pile, which is also extremely satisfying.

Other excellent sources of distraction are our sweet, funny puppies. Having another dog in the house has been a challenge but such a joy. Both dogs have social issues, so it's taking them longer than I expected for them to get used to each other, but after more than two months together, they've finally started playing. Not often, and they both still freak each other out sometimes, but when they get the hang of it and start chasing each other around, my smile goes so wide my head might just snap in half. In a good way.

It's been a rough month for me, and I remember musing last summer that perhaps I get the opposite of SAD, because my bouts of depression in the summertime are intense, and much harder to get over than the piddly sad days of winter. This summer's been tough, but I'm muddling through, and I owe many, many days of survival to my above list of distractions. If it was just me and my head, I can't imagine how I would stay sane.

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Downs and Ups

After my last post, I did not climb out of the depressive hole, but in fact, sank deeper into it.

I keep coming here to try and write about what's happening in my life, but I've been struggling with anxiety and depression and the best thing I could do for myself was to look away from my train-wreck life for a bit and let my inner turmoil work itself out. And now, it has, and I feel obligated to examine this very full plate I have, before things spill over and I start making a general mess of myself. Again.

School: I should have taken the summer off. Lesson learned. This class is not difficult, but keeping up with the quicker pace has been tricky, especially with the added migraine trigger of the summer heat constantly making my head miserable.

I'm actually running out of classes I can take at my current school -- they don't offer online degrees, just a smattering of a selection -- but I think I can stretch it until spring, if I want. But regardless of when I go, I need to start really digging into the application and integration process at my future school, which is intimidating.

Home: Our house has been under construction since we moved in, and while the biggest projects are finally completed (functional septic tank, you are my bestest friend!) many projects are still incomplete, which gives our home an air of disrepair. Also, my landlord/grandparent has never been keen on fixing the place up, and is unreasonable about issues like: mold, dangerously leaning trees, and providing copies of bills that he wants us to pay. I want to move, but we're kind of trapped, since rentals are outrageously priced right now. My whole SSDI payment wouldn't cover the average studio. How do other disabled people afford to live?

Dogs: We're fostering/have adopted another dog (depending on who and when you ask), and while he is a sweet and funny addition to our little family, we've all had to adjust. Shockingly, feeding and caring for two dogs is double the work and money of one. This can be overwhelming, and if I'd had the choice, we wouldn't have taken the new dog. Unfortunately, he's here and he's adorable and wonderful, so it's too late now.

Love: My man and I are working on some issues, and this is an ongoing challenge in our lives, because neither one of us had intact parental models to emulate, so we really struggle to avoid the dysfunctional pitfalls of our childhoods. Basically, we both need therapy that we can't afford.

Family/friends: I joked this week that I should write a book called How to Lose Friends and Alienate People. Chapter one: Become Chronically Ill. People in the real world are starting to forget that I exist, and I am so terribly lonely sometimes, I feel like I can't breathe. Traveling has become harder for me, maybe because of the heat, and going to the city wipes me out for at least a few days, so I've stopped doing it for any social reasons. I'm a mess by the time I get to my destination, anyway. We live at most an hour from most of my friends and relatives, and even though I've issued invitations for them to come see me, I get very few visitors. The internet provides some connection, but it's not the same. I have a huge extended family that gets together at least every few months, but none of them reach out to me, and haven't since I got sick. The difference in social interaction between the first 27 years of my life and the last 7 has been a major shock to my system. When I was well, I felt I had this huge support system, that I had no shortage of people who cared for me and would be there if I fell, but I was obviously wrong, because I have fallen, in fact I'm still sprawled out all over the floor, and none of those people are anywhere around. The isolation hurts more than the migraines, sometimes.

My head: I am so fucking tired of being nauseated. I'm tired of the constant pressure, the stabbing that takes me by surprise and ruins half of my happy moments. I wish I could just have a day off. This last depressive stint led me to all kinds of suicidal ideation, mostly revolving around creative ways to take out the hot spots on my head. It's scary when my brain takes me to these places of desperation, all I can do is cling to whatever I can to make it to the next day, the next hour, the next moment. I made it, this time. I worry that someday I might not.

So, that's what's been going on in my head recently. There have been good things, too, like getting As, spending time with the friends who do remember me, playing with dogs, cooking interesting, healthy, tasty food, going on hikes that leave me sweaty and giddy, and discovering awesome books and tv to take my mind off of my troubles. Life is full of ups and downs, it's about making the ups as up as I can.


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I Recommend You Eat This

Hummus is the perfect summer food.

I've been stressed lately, but not in a bad way. My head's been reacting to it, like it does, but I've been getting a lot done, and that always makes the pain more bearable, for me.

This stress has brought many good things, like an A in my last class, a successful beginning in my current, and already planning fall quarter like a Boss. Also, we've happily integrated a new member into our wee pack, I've enjoyed a bit of a social life, and we've been able to keep the house consistently tidy. I'm so happy I've been able to live this much, but I still have too many days when I really feel like I've hit my limit, I'm never going to be able to get up again, and everything is just too. damn. hard. Yesterday was one of those days, and today I'm still shrugging it off, but I have just seriously cheered myself up by making hummus for lunch. So, please let me share my recipe with you, because it made me ever so happy and I hope fellow hummus-lovers, and hummus-lovers-to-be, will also find joy in my chickpea delight.

I never make hummus the same way twice, it's one of those foods that is really hard to mess up, so I just improv my way through it, and enjoy the results. You will need:

1 or more cans of chickpeas (or garbanzo beans, same thing), depending on how much hummus you want to make. You can also get them dried and prep them beforehand.

Roasted garlic. I just take a whole head or two and pop it in the oven for twenty minutes at 350. You'll only need a few cloves for the hummus, to taste, but roasted garlic will keep a while in the fridge and comes in handy in so many dishes.

Nut butter, a tablespoon or more. Traditionally, tahini (sesame seed butter) is called for, but I don't always have that on hand, and find peanut butter to be an adequate, though noticeable, substitute.

Salt, paprika, parsley, pepper, lemon juice, cayenne, basil, etc. to taste. Again, this is a hard dish to screw up, but it's a good rule of thumb to start with less and add if needed.

Extra virgin olive oil, a teaspoon to several tablespoons, depending on your preference. I prefer only a teaspoon or two of oil, and to supplement any other needed moisture with water, a tablespoon at a time.

Directions: Dump everything in a food processor and let it go until it's creamy, and nicely dippable. Slice some cucumbers, wash a few carrots, dip, eat, and feel your cares melt away. Okay, not really, but hummus is pretty good and you should try it.

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Addressing Anxiety

My head has improved to the point that I am having about 80% fewer emotional outbursts.*

*This is a total guesstimate bull-pucky percentage.

Of the remaining pissy-fits I throw, at least half of those are totally warranted. Tripping over the shoes I asked to have picked up five times that day, or finding out the captions I was expecting from my school weeks ago are going to be delayed (again!); these are valid reasons to get tense. It's the random and unexpected freak-outs that I'm not appreciating, the ones that seem come out of nowhere. It'll be about something small, like asking a stranger a question, or starting a project I'm unsure about, and I may be left crying and panicky for no real reason. I could take control in these situations, plunge forward through the fear and face it, and I often do, but sometimes I just can't.

I'm paralyzed and terrified and sick with anxiety and I don't even know why. Well, no, it's usually rather traceable if I can take a moment to think about the bigger picture, but regardless, the little things shouldn't be adding up to this dire, fearful situation. It should be mildly awkward, or maybe uncomfortable, or just a little inconvenient or unfamiliar, but once my DANGERDANGERDANGER hackles are up, I'm in fight or flight mode and the rest is some form of panic attack.

It's been more frequent lately, though maybe only twice a month. Still, that's way too often to feel out of control of my emotions and afraid of the world. So, I did what I always do when faced with a problem that not only baffles me, but frightens me, I turned to my lifelong source of advice and comfort: books. In my first venture into self-help anxiety research, at our local, rather rural library, I found one book that told me absolutely nothing more than I already know. It did remind me that phobias are tied to anxiety, which OBVIOUSLY, but I do let my fear of spiders and other creepy-crawlies get the better of me, and I need to start addressing that. I've already run across some cognitive therapy techniques that I've found useful, recognizing negative thoughts and redirecting them has been helpful, for example, so that may be something to try next time a massive mosquito-eater obsessively flies in my face. (Hi, there are no mosquitoes in my nose, I promise.) I'm going to keep researching how to implement these techniques, in the library and online, because the more I know about a problem, the better I feel.

I've resisted getting real therapy. It's too far, it'll make my head hurt, we can't afford it, I'm not that bad off; I've got at least a dozen more if you want to hear them. They're all true, but some of them are less valid than others, and I'm kidding myself if I don't acknowledge that I'm a little too quick with the thousand-million reasons why not.

I got therapy when I was a kid, my parents went through a nasty custody battle in which I suppose I was a little scarred, but mostly it was a bizarre adventure for me. I have some vivid memories of my time with the psychologist, she was kind, I played with toys and we talked. She promised me that everything we said in our sessions was private, she wouldn't tell my parents. I remember so clearly the feeling of shock and betrayal when, in a joint session, the counselor revealed something to my mom that I didn't want her to know. I don't remember what it was, just that I felt deceived and stupid for having trusted her. It was like a punch in the chest, and I can feel it again writing this down. I know not all shrinks are like that, I know that revealing that small detail, whatever it was, probably didn't change anything significant in my life, but I also know that was a defining moment for me.

I realized then that I couldn't trust people by default, that I'd have to be more careful. I realized then that honesty and privacy were not to be taken for granted, and that once I let a thought out into the world, it was no longer only mine. Anyone could repeat it, use it against me, or deface it. I hold my beliefs and my emotions close, as a consequence, and while I try to be outspoken and brave, I've always got a rock of fear in my belly, reminding me that I'm never really safe.

Yeah, trust issues, I guess. But as long as I see myself making progress under my own volition, which I am, I can justify my reluctance.



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Picking up the Pieces (of Trash)

Regrouping from the lost days of migraine is never easy.

So it goes. I spent a few hours at the beach with friends, or I hiked too hard or too far, or I paid a visit to the city, in all its stimulating glory. Maybe I didn't actually do anything, but my head is flaring because of pollen or chainsaws or mercury is in retrograde. Whatever the reason, it happens. My head aches, I can't think, I'm suddenly cold and irritable and hungry but nauseated, and if I move, it's a quadrillion times worse, so I'm as still and quiet as I can possibly be until it passes. After the worst of it is over, and I'm trying to refocus my eyes, and my brain, on the world around me, I remain sensitive for days, and righting myself can be a challenge.

The most frustrating thing is how much neglected chores and work build up around me while I'm down. I can barely take care of myself when my head is on high; sleeping and hydration are my number one goals, but school, eating, hygiene, and especially housecleaning are often left by the wayside while I deal with the pain, discomfort, and emotional toll migraines take on my body.

So, what happens is: I start to feel better, I take a shower, I put on a bra, and I start looking around at my surroundings and I'm appalled. Where did these mountains of dishes and laundry and dust and grime even come from? (No really, WHERE? We're only two people!)

I've learned not to marathon the cleaning, that will always drive me back into migraine, but to work in mindful spurts, when I can, and to stop at the first sign of migrainous consequences.

It's a lot of mindfulness and practice and patience with myself, but when I get it right, life is so much easier. For example, when I got up to get a cup of tea a few minutes ago, I grabbed everything within reach that wasn't where it was supposed to be. I grabbed my empty mug, a few pieces of trash, a plate from a snack a few hours ago, and a book that needed to go back on the shelf. I put it all away on the way into the kitchen. Then, while I was waiting for the water to boil, I took those five minutes to wash a few dishes, put a few spices back where they go, and throw away that empty wrapper that was wedged behind the toaster. I do this type of accidental cleaning as often as I can, and it's astounding how quickly the efforts of just a few minutes at a time add up, and a cluttered and messy house can be brought to a much less frightening level of cleanliness.

This has been working for me, most of the time. Even on my worst days, I can usually put in at least a few minutes' effort, and though it may cause me pain at the time, being productive - even in a tiny measure - can do wonders for my mentality when I'm in the throes of a downturn. Though, if I'm going to share the good, I should absolutely articulate how bad it can get.

It's embarrassing when my house is messy, I don't want anyone to come over, it makes me feel out of control and gross, and my usually rather mild anxiety goes through the roof when there's too much clutter. If I'm not able to stay on top of the mess, put in the daily maintenance and hold others to the same task, the mess can evolve into an impossible feat of claustrophobic proportions, which makes it a migraine trigger (or at least, an exacerbator), by virtue of the stress it causes my mind and body.

Now, it becomes a matter of getting myself out of this perpetual motion anxiety/migraine machine and breaking the cycle, which is so much harder than sticking to the small-scale, daily maintenance, because not only is it a bigger physical challenge to tackle a less-controlled mess, it becomes a mental weight, too. When every effort hurts my head, an intimidating task like a sink full of dishes can feel like a sentence of years of hard labor.

Sometimes, I get right to it, I swallow my anxiety or resentment, put on some happy music and do what I can for as long as I can, basically my maintenance routine, but kicked up a notch. Sometimes, it takes me an extra day to work up to it. Sometimes, I can't even get started without help.

I've definitely got some weird emotional issues with cleaning, especially cleaning up after other people, and while I'm working on those issues, they've gotten worse since I got sick. It helps to keep to my little maintenance schedule, and I continue to subscribe to UfYH via RSS, and the daily reminders and before-and-after shots keep me inspired and motivated on hard days.

When the migraines first started, I spent so much time curled up in bed, I wouldn't have noticed a mess if it was piled on top of me. So, it's really a testament to my improved health that I even have the energy to care so much about having an orderly home. I'm going to count that as a win.




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