Today has been anything but good. It hasn’t been bad though either.
I had a bad night of trying to sleep, and my bladder (and an annoying cat) made it hard to get any quality sleep after about 6 this morning. At 10, after a measly 9 hours of sleep, I gave up and got up for the day. I felt terrible. Inside and out. The novelty of my new “room” here in my mother’s family room has long since gone away. I feel surrounded by boxes of stuff I have nowhere to put. I’m not really unpacking them here or putting the contents anywhere, but it’s stuff I don’t want in storage. In the meantime I feel like the boxes are beginning to smother me. But that’s all cosmetic stuff, things you think laying in bed at 10am wondering what to do with your day.
It took me about an hour and a half to get out of the house, but I managed to get out into the sun for a while before the rain was set to arrive. Too weak to drag my laptop to the bookhouse, or to the park…I brought my pens and notebook, sat on the Hudson watching flood debris float by and did some writing. It didn’t take long for my energy to be completely shot, and anticipating afternoon plans I headed home.
Instead of afternoon plans I felt worse. I didn’t take any Advil or anything today, and by 3pm I was left wondering what is happening to my liver and kidney’s when I can’t make it past 3pm without some form of pain medication. I realized something is wrong when you don’t go any 24 hour period without something. So what do I do? Pain management? To me that means staying in bed and never going anywhere. Lyme pain is not something you can “manage”. Maybe you can live with it, but you certainly can’t manage a life.
This morning I told my mother my stomach was unsettled, but I had just finished taking my 23 pills and supplements this morning. “A year ago 23 pills would have been a cry for help, now it’s just breakfast.”
So I’m left wondering how to balance chronic illness with life. I’m not one for accepting being unhappy or miserable. I can’t find any light or happiness in just laying here day by day, and I wonder how I can possibly heal or recover without light or happiness? But I just push myself from one day to the next just to steal moments of normalcy, anything than spend my days in a bed in my mom’s famly room.
Without a miracle I will have no choice but to live here for at least the next year. It’s likely to be more like 2 or 3 years, but the reality is it’s not just a visit…I will probably live here for longer than I lived in my last apartment, so that’s not going to change. The best I can hope for is 80% of the person I was before I got sick, so the disease or sickness isn’t going to change. What’s gotta change is my willingness to just accept it, put my head back on the pillow and go back to watching TBS reruns all day waiting for those good days every 2 to 3 weeks, when they appear.
So on that note I need to learn to re-live my life all over again. What I’ve put the last 36 years into is not gonna work out so well for me at this juncture, so I have to find a way to accept it without being miserable the rest of my life. But what I can’t figure out is how to be anything BUT miserable for the rest of my life knowing this is what my life is now. What do you do then?
Maybe that’s a rhetorical question…maybe I need ideas from you, unfortunately my oxygen deprived brain can’t even figure that out right now.
We’re approaching a year now that I’ve been sick, the life I lived is nothing more than a distant memory…I feel like I’m picking team members for some sort of game and all that’s left to choose from is the overweight, short, uncoordinated kid who can’t catch the ball, let alone play the game. That kid is life with Lyme disease, and if I want to play the game I have no choice but to accept it.
