Losing time

Stories about time travel have always fascinated me.  I read my first one in grade school and was both intrigued and horrified by the implications.  You could go back and fix mistakes, but sometimes those mistakes shape who you are.  Everything you do matters.  Change one thing and you change everything.

I have always tried to do more than I was able to in any window of time.  When I was in college, I worked full time, did lab work for my senior thesis and took a full course load.  When I realized that I didn’t have enough time to do all of this, I stopped sleeping on Tuesdays and Thursdays.  I wasn’t satisfied with the amount I could do in the time I was given, so I stole some extra time.

When I interview for jobs, people are always confused.  “The dates on your resume are wrong,” is one I get a lot.  They’re not.  I really did work two full time jobs in grad school at the beginning of my illness.  I just needed to do all these things at once so I sacrificed sleep and time off.  It has taken its toll, but I don’t regret the decisions I made.  I had to get through school and I had to support myself.  Necessity is a powerful motivator.

In the weeks before I was diagnosed, I would sleep through entire days.  I would not wake to eat, drink, pee, or take medication.  I sometimes could not be woken, and if I was, I was very disoriented and confused.  My disease had strained my body to the point that it needed huge amounts of sleep to function.  I would sleep for 22 hours, then be awake for 36-48 hours and do it all over again. 

Since about April, I have had this overpowering need to sleep all the time.  It had gone away for a while, but this was an obvious side effect of the steroids and you can’t take steroids forever.  I have to be woken up every day in order to take my morning medications or I will wake up and anaphylax.  When I go to sleep, I never know when I will wake up.  I have numerous alarms, including a deaf alarm that shakes the bed, but when I am in these “mast cell comas,” it makes no difference.  I need a person to come in and wake me up.

Last week was quite a week for me.  I knew there would be fallout, and I was not wrong.  I have been awake for less than 36 hours in the last five days.  In the hours I am awake, I am uncomfortable and flushing and having GI issues.   I know it will equilibrate once I get through this.  We are changing some meds to try and address this issue.  But the feeling of losing is palpable. 

When you are young, you have this feeling that you can always do something later.  You procrastinate and reschedule things and there is no danger that you won’t eventually get to these things.  But then one day you wake up after 17 hours of sleep and you have all these things to do and you have to do them all right now because once you fall asleep, they might not get done.   I know that this is because of what happened last week.  I know my body is trying to recover from the stress.  But I can’t help but feel like I’m losing time, and that feeling is overwhelming and sad. 

There’s no time anywhere for me to steal.  I read this story by Harlan Ellison in high school about a society in which people only get an allotted amount of time for their entire lives.  This feels like that.  It feels like I manipulated the time continuum earlier in my life and because I did, I have to live with less now. 

Every time I wake up, I hear this buzzing in my head and I think, that’s what time sounds like and it’s catching up to me.