Well, I haven’t written about narcolepsy in a while. Most would assume that is because I don’t struggle with the disease or that it isn’t a big part of my life. Those assumptions are very wrong. I went without my meds for about four days. During that time I felt sluggish and as if I was in a different reality. I couldn’t focus nor could I stay up past 9 PM without feeling like I was going to pass out. During the day I would think about napping and sleeping; I wished constantly that someone would rescue me from having to be awake. I wished for someone to sweep in and say “I’ve got this- you go rest now.” Oh, how I wanted to rest. Oh, how I wanted to stop counting pennies and take a breather from worrying about whether or not I have enough money to buy a bale of hay for my horses. Everything cost so much energy.
Today- I got my meds and let me tell you I feel wonderful. The past few days I downed caffeine like it was blood. It would keep me awake for a little while but it didn’t sustain me. I drank way too much soda. Today, I drank one soda- not because I had to but because I wanted to. I didn’t need the caffeine- I drank it for the taste.
That is the difference of when I take my medication. I feel normal- alive and well. I feel like I can accomplish my dreams instead of watching them drift away. Some might say my posts are all over the place- that there are too many highs and lows. I would say that that is the effects of the narcolepsy- The struggle to get through life with a leaky tank.
I talked to a nurse the other night. She said that lyme can cause narcolepsy- does it really? Could my disease be cured? Could I live without having to take meds? Is it possible? I think I’ll be exploring that option as I want to know if there is a way to get rid of this disease.
The flip side is that I’ve grown used to having narcolepsy- I’ve grown used to rolling my eyes when people complain about how tired they are. I’ve grown used to people brushing off my illness like it’s all in my head. I’ve grown used to people not understanding my struggles. I’ve given up hoping that there are people out there who will support me when I can barely get out of bed.
I’m driven to succeed and I’ll do what it takes. Narcolepsy slows me down but I’ve grown used to the handicap. I’ve grown used to the extra baggage I have to schlep around each and every day. It’s helped be become a better writer. It’s helped me to understand that people have demons we can’t see. It’s helped me to be more reasonable and more accepting. I dream (and yes, I actually do dream of this whilst I sleep in my cramped twin bed) of a man who is resilient and considerate. I dream of a man who wants to care for his family. I dream of a man who want me to have an easy life, a good life. I dream of a man who want to teach me what it is to enjoy life. I dream of a man who takes risks and pushes himself to be a better person. I dream of a man who embraces my short comings as I embrace his. This man is in my dreams and I wish for him to be real. To be more than a facsimile of my heart’s yearnings . I dream of a man as unique and interesting as I am. I dream, oh how I dream.
Check out http://feliciajane.blogspot.com/ for more musings and poetic mutterings