Tuesday, September 11, 2012


Before going any further; I want you to read The Spoon Theory by Christine Miserandino.

Did you read it?

All of it?

That's okay.  I'll wait.

Okay good.  Now this blog post will make some sense.

So I know I don't have a chronic illness per-say; but what I have is chronic.  It's a syndrome not an illness, but it affects me in the same way; a way in which I don't think I will ever be able to illustrate as eloquently and accurately as Christine does.

When I wake up exhausted it isn't because I have Tourette's; it's because of what the Tourette's takes from my body.  The constant movement.  The pain.  The making a fool of yourself in class.  The not being able to sleep at night because your brain JUST WON'T STOP.  That isn't the Tourette's, it's called "comorbid" conditions.  What you have in addition to or because of the overarching diagnosis.  No, exhaustion isn't disabling; but it sure makes my day much harder to get through.

And weeks like this one?  Where I've had a mild head cold for about a week; bad enough in the beginning I had to take Nyquil that I'm now weaning myself off of (because if I go "cold turkey" I won't sleep for days)?  It took me 45 minutes of hitting "snooze" this morning to get up.  It's a miracle I made it to school dressed in appropriate clothing and with everything I needed to get through my 12-hour day (though I was 5 minutes late to my 8am class).

The morning is full of choices of how I want to spend my spoons.  I don't have the luxury of showering when I wake up, even though I know I would feel more awake if I ever managed to.  My brain and body move so slowly in the morning that I can't plan to shower when I wake up, because the likelihood of me snoozing for an hour is too high.

I hate breakfast (love breakfast food, just not at breakfast times).  If it were up to me, I wouldn't eat anything until 10 or 11 o'clock.  But I have to take my medicine (which in the morning includes my migraine meds, multi-vitamin, vitamin supplements, and a green tea supplement).  Each one of these things is vital to my health; the vitamins help me stay healthier longer, when I do get sick it can take weeks to shake a simple cold because my body is so run down all the time.  The migraine pills are self-explanatory; if I skip my meds in the morning I will have a migraine by 2 o'clock in the afternoon.  The green tea supplement is for two reasons; one, to help me wake up in the morning and two, to help get my metabolism started in the morning (because the 6-years of prescription pills screwed up any chance I had at a normal metabolism).

Sunday morning I gave up about half of my spoons in one split-second decision.  I was getting ready for my first day of Sunday school, and while I had plenty of time to get to work and prep my classroom, I still wanted to swing by the store for some items I had forgotten but needed to teach.  So I had to plan an extra 30-minutes into my morning, just in case the store was busy.  I was ready and had my breakfast (toast) wrapped up in a paper towel with my teaching things by the door.  I realized I hadn't taken my medication and instead of throwing the pills in a plastic bag to take when I got to work, I took them all in one swallow.  I was wide awake, and I figured I would be eating breakfast in less than 5 minutes when I started driving.

I didn't even make it to my truck in the parking lot before I started hurling.

I was shaky and nauseous for the whole morning.  Afterwards, I ate way too many un-filling Jimmy John's veggie sandwiches at the in-service we had after work, and I barely made it home before crashing on my couch.

When I should have been saving my spoons for work and driving, I threw them away on a quick fix for my medication.

Luckily, getting dressed in the morning is pretty easy.  I have sweat pants or jeans.  And I pretty much just pick a top or sweatshirt depending on the weather and go.  But I do know what it is like to plan your outfits based on your bruises.  My legs are covered in mystery bruises all the time, some of which I think are from cramps (or at least, sudden cramps that hurl my body into inanimate objects).  I have bruised my arm from fingers to elbow and had to wear sweatshirts in the summertime to hide them.

Sometimes my hands won't work long enough to put shoes on or do up buttons.

I have to make choices about when and where I drive.  I don't drive (if I can help it) after 7:30 at night.  If I'm not heading home by 8 o'clock, I'm in trouble.  When I do have to drive home late, I take the back roads so I can drive sloooow and steady.  I have to drive under or right at the speed limit.  Can you imagine if I got pulled over by a cop?  I have heard of people with less severe disabilities when it comes to driving having their licenses suspended when they get pulled over.  I can't afford to let that happen.  I talk to people on the phone (bluetooth!) or sing to the radio or talk to myself when I drive so that my brain is preoccupied with something else and doesn't have the opportunity to think about ticcing.

I have to make choices at school about how to spend my spoons.  Do I sit in the front of the class and try to take notes like everyone else?  Do I stay in a class when all I want to do is stand up and leave to let the tics out?  Do I sit in my chair or stand up and pace?  Each of these choices costs a spoon.  And because my education and my classes are important to me, I want to ensure that I am in class participating as much as possible.  So there go some more spoons.

Do I go home in between classes?  (Minus some spoons for driving, but plus more than I would lose for going home to decompress and rest.)  Or do I stay at school and do schoolwork all day?

Do I go straight home at the end of the day or do I run an errand that I've been putting off all week?

Was I smart, and do I have dinner prepared at home?  Or has this week been so hectic that my choices are to eat out or cook dinner?  Do I have the energy to cook dinner?  Do I have the energy to deal with going somewhere for food?

Do I even want to bother with dinner at all?  (Minus some of tomorrows spoons.)

Do I stay up late at night and do schoolwork I've been neglecting?  Do I stay up and work on items for my Etsy store?  Do I crash on the couch and zone out to Friends re-runs?

For me, going to bed early isn't an option.  I don't sleep well as it is; the last thing I need is to be waking up at 4 in the morning or lying in bed for 3 hours unable to fall asleep.

Every single day is full of choices that I have to make based on my disability.  Getting up and waltzing out of the apartment doesn't happen.  It is a calculated decision on where I have to be that day, how long I have to be there, which route I am going to take when I drive, and the list goes on and on and on.

And most of it is second nature by now.

When I read The Spoon Theory the other day it reminded me that not everyone lives their life in this manner.  That for most everybody else, this decision making process isn't "normal".

I don't simply have the choice to go out with friends at night.  Going out at night means I am giving up a lot of spoons the next day.  Means sleeping in a few extra hours to try and make up for the lost energy.  It means not being cognitively "all-there" the next day.

I don't just "run to the grocery store".  I have to make lists because I can't remember from one minute to the next what I need, and even then the lists don't always help.  I spent an hour in the grocery store last week after my concussion and still ended up with nothing suitable to make meals out of.  I try to plan a week's worth of meals around one trip to the store.  But then I have to prep and cook everything on the weekend when I have more time and more spoons, but that doesn't always work out.

I don't get to spend my weekends with friends or catching up on important school work; I spend them crashed on the couch trying to catch up on rest or just preserve my spoons for next week. 

I don't just go to work out.  It's a calculated plan based on how I feel now, how much I have to get done the rest of the day, and how I think I will feel tomorrow.  I wish I had the energy every day to be at the gym, but I just don't.  Some days I can barely make it through my day without the added stress and exhaustion from the gym.  Today?  I made the choice to do schoolwork because I have been running low on spoons lately due to my cold.  Tomorrow?  Well, tomorrow I don't have classes and because I did so much work today on campus, I should be able to spend some spoons at the gym.  Thursday?  We'll have to wait and see.

I am hoping that Quincy can help me save some spoons, or at least give me more to start with.  That with his assistance, some of these decisions I have to make every day won't end up costing me a spoon.  That he'll help me get some spoons back mid-day if I spend them.  I won't have to go home to decompress; he can help me do it on campus.  I'll be forced to make sure he has everything we need before leaving the house, and in doing so maybe I can be inspired to make sure I have everything I need too.  He will be the reason I have to leave my apartment some days when I would rather stay inside, costing some spoons.  But he will also help me get spoons back by sleeping better at night.  (Yes, he will be sleeping in my bed... as long as he wants to.  I have noticed a distinct difference from when my cat sleeps next to me or on me at night or when I have my parent's dachshund sleep with me when I visit them; something about having an animal touching me forces my brain to chill out and it leads to me sleeping better.)  And maybe, I will end up with enough spoons at the end of the week that I don't have to hoard them all for running errands and work, but I can actually use some on going out and being a more normal college student.

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