I had a slow day today. I managed to get it through my stressed out head that I needed a day on the couch. I've totally worn myself out this weekend and it was getting worse as I kept pushing myself anyway. So today it was just me, my dog and the tv. I found a new cleaning strategy too- if I only clean during commercials, I can rest and still get things done at the same time. Muahaha.
It has, however, brought my job worries back to the front of my mind. Fortunately, after years of vague unarticulated fears, I'm finally really able to pinpoint why I'm so worried about eventually trying to support myself. Unfortunately, the fears are actually founded in something. I'm finally really beginning to digest the fact that I have Narcolepsy, and to really understand what this means for the rest of my life.
When I was first diagnosed, I was just really happy to have a diagnosis that might result in some treatment and relief from the nightly horror film festival. And I was very happy (and still am) with how much the Xyrem helped my nightmares and hallucinations go away. I was also very happy and encouraged when the Remeron turned out to take care of the side effects and, as a bonus, the depression I've been fighting for so many years. I've been gaining weight back (triple digits again! Woohoo!) and feeling much better about life in general. Everyone I know has been commenting on how much better I look.
But as I approach the maximum dose of Xyrem, it's beginning to sink in that I'm never going to have the energy of the people around me. I'm never going to be awake and alert they way my dad is, or any of my friends. I will always run smack into things and hurt myself because I literally can't accurately place my body in the world around me. Every day I will have to fight the exhaustion that forces me to take naps just to keep going. I'm always going to catch colds every other week, and have to spend days like today lying down for hours to recover from my occasional attempts to be social. A couple hours at the mall pretending to be normal, and here I am still recovering two days later.
I would be lying if I said it doesn't scare the crap out of me. I'm in my prime right now. This is the healthiest time of my life. If this is the height of my energy level, how will it be in ten years? Twenty years? I'll probably look back wistfully and think of how great it was to be able to function for an hour at a time. If I'm worried about supporting myself now, how will I manage in the future?
I have two-ish years left on my dad's insurance, which gives me a bit of a deadline. But I'm seriously wondering why anyone will want to hire me when they can hire someone with similar skills, or even slightly less, who can actually work all day. Someone who doesn't have make every meal herself and work in two hour spurts separated by naps. Someone who isn't easily confused and a bit awkward because she can't think fast enough to keep up. Every time I've been interviewed by someone, I've ended up crying because I get so lost during the rapid-fire questioning.
I've been thinking that maybe the best way to handle the situation is to start my own business. If I go freelance, I can work in between my really rigid daily routine that gives me my maximum amount of ability to function. So that's a thought. But I'm not going to completely let go of the idea of working part time. Though I really don't think I could stay healthy and make enough to support myself doing that. Full time is pretty much out of my equation right now. Full time would be like college, only with more rigid hours. And I've made a promise to myself that I'm not doing that again.
I think I would feel better about things if the people around me understood my fears instead of just brushing them off and telling me that I'll be fine. It really urks me and adds to the anxiety because if the people who have known me for my whole life don't believe me when I tell them I have a legitimate, life-screwing problem, how will I convince possible employers of my special needs? Last time I registered for classes, one of the academic advisors was giving me a hard time about only taking four classes. And when I explained that I had multiple health issues, he didn't believe me. Yeah, that boosted my confidence.
So for now I'm just going to keep worrying and trying to explain my fears in the hopes that people might actually believe me more often in the future. And continue slowly working my way through more classes so that the people in my life don't give me too hard a time. Here's to many more days on the couch.
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First and foremost, I am proud of you for giving yourself a break. I am slowly beginning to accept the same realities that lead you to accept the need for a couch day yesterday. It is one of the most difficult aspects of this disease. Thus, I too raise a glass (or a vial of Xyrem) to many more coach days.
ReplyDeleteAs for the other pieces of your blog post, I won't pretend that those concerns are not real. I fought for six years pre-diagnosis to stay full-time. One year even led to an emergency medical leave for a trimester. And, the only reason that I was able to fake it that long was that I am an extreme extrovert. Thus, I fed off of the interactions with my students and colleges. I also used every single sick day each year. Still pre-diagnosis, I switched to part-time. That has truly been a blessing, but I still push too hard at times.
I am glad that you are not giving up on looking for something part-time. You will be surprised at the wide variety of options that are out there for you. And, although I do not "know" you, I will offer these reasons as to why someone would want to hire you. One, you are obviously witty and creative (even with narcolepsy slowing down your brain). Two, you clearly have a tremendous intellect given your degree from an elite liberal arts college (achieved while coping with a couple of insane disabilities). Three, your dreams provide you a phenomenally rich tapestry from which to draw your art and animation. Four, you will find ways to balance your needs with work. Some days will be better, and some will be worse. But, in the end, you will likely still produce more impressive work at 50% or 75% than many people do at 100%. I also think that looking into freelancing is a great idea. Hang in there, Wolfie. And, thanks for sharing such real and honest fears.