Rae – Sleep = Madness

I’m not capable of a lot of things, but if there is some sort of end of the world type situation and we have to all pile into the car and drive-drive-drive to some sort of safety? I nominate myself as driver. I don’t have to sleep. I will just turn on the engine and GO. By the time we get to wherever I’ll be totally flipping insane but I am capable going without sleep for days.

What have you heard about people on disability? They’re lazy, don’t want to work and feel entitled to get money from the state? Some people receiving disability actually believe that crap. I did.

Every time I got my check in the mail I felt horrible. Why? Why couldn’t I just get a job? My roommate was getting up everyday, going to work. Why couldn’t I?

Every disability is different, but the reason my body, with bipolar 1 disorder, is not able to cope with a 9 – 5 job is this equation:

Rae – sleep = madness.

You’d think all I’d have to do is take the medication that helps me sleep, and then:

Rae + Sleep = Like A Lawyer Or Some &#+@

I do take medication, every night at the same time, but just because I’m regular as hell about it? Does not mean my body will be. Sometimes I wake up, think it’s six A.M., look at my phone and it’s only two hours after I took my medication. Then the games begin. I wonder – what do I do? Take more seroquel? Klonopin? What will get me to sleep ::now:: and give me the ability to be awake in the morning to take care of my kid?

I could fill page after page with the sleep variations that rock my world, but try to take my word for it – the equation can never EVER be Rae + Sleep. Rae + (hopefully) Sleep is how I live. That determines how the next day goes for me.

I was living in San Francisco when I was diagnosed at 18 years old. I was working, trying to adjust to medication, not getting sleep and basically suffering for months. I started getting disability benefits at 19 and my life changed for the better. I no longer had to worry about how I was going to pay for my medication or doctor’s visits. All my energy went to living in a healthy way and getting my brain together. I started school, I started writing, I started exercising and learning how to care for myself. The problem was everyone asking me what I did for a living.

The answer, I guess, was, “THIS.” I need support, monetary and otherwise, to be able to be here and be present and live. I am disabled. I can not rely on my body to have a job at a store – and if I tried to get a job at a store part time with hours that really worked for me and my brain? I would have endangered my disability – and what flexible job could I get that would cover my hundreds of dollars in medication?

I am jealous of people who have typical brains and typical jobs. My husband has a fabulous job. I see how hard he works, and it’s not easy. But! His body can sleep! He can close his eyes and go to sleep. I’ve never been able to do that. If his sleep is disturbed he can take a nap. I can’t do that either. And even if he stops sleeping for a few days? He can soldier through until he catches up on sleep. Three days of bad sleep for Rae? Madness.

That’s why I don’t let three days go by without getting sleep. I’ve arranged my life differently than other people. I don’t go out at night for a late dinner or movie. I’ve done things in emergencies like rent an expensive hotel room I couldn’t really afford just to make sure I got a good night sleep because the people I was staying with on vacation were too noisy and keeping me up. (I sound like so much fun.)

When we decided to have a baby, the first thing I said was no, I have to be able to sleep. We decided my husband would take night duty. I go to bed early and wake up very early to take over so he can get a full night sleep and have time to get ready for work. (Those first weeks when she was waking up every two to three hours he had paternity leave.)

RaeRosedisabled

When I got married, I lost my disability benefits. My husband has insurance that pays for my medication and my visits with my psychiatrist – but it has been a struggle. I mean, my husband pays for my deodorant. That doesn’t feel great. Sure, I contribute to our life, but someday I would like to be able to find a job that I can do from home. A job I love and a job I’m proud of.

If you’re on disability, I hope you embrace it. If you hear so-and-so is on disability, I hope you’re cool about it and guys, for real, I’m ready — if it’s the end of the world kinda thing? I’ll drive.

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