I slept through the first six months of my marriage. I wish I meant slept, you know, like newlyweds are supposed to do. But I mean I literally SLEPT. By a month into our marriage I was sleeping days at a time with only a short pee break every 24 hours. I hated the fact that people were created with bladders. I was tempted several times to just get a Foley catheter just so I wouldn’t have to wake up. Unfortunately, it is frowned upon to steal supplies from my work. Plus, I would have had some very awkward explaining to do if caught, not mention a cataplexy attack that could send me to the ground from the embarrassment. It was all I could do to even get up enough energy to even bathe myself. There were several times I just went days without. And for future reference, sleeping 24 hours at a time plus lack of hygiene can put a little damper on your sex life.
I have always been a tired person. After the first semester of nursing school, my fatigue sent me searching for answers from my doctor. After a few months of being told to just take my vitamins and supplements, or that I was just depressed, they finally sent me to the Mayo Clinic. There, I was diagnosed with postural orthostatic tachycardia syndrome, which was thought to be the cause of my fatigue. I made it through college, passed my boards, and started my career as an RN. In October, I met my wonderful husband, very quickly fell in love, and got engaged at the stroke of midnight of the new year. But my fatigue only worsened through the year. A month after our wedding, my husband begged me to go back to the Mayo Clinic for help with what we thought was just my POTS worsening. I ignored his plea until he finally said, “I miss my wife.”
Mayo was able to schedule me in very quickly. And by very quickly I mean three months away from when I called.. My husband and I prayed for answers. In August, we spent three days at Mayo for autonomic testing. On the last morning, I could hardly wake up. I convinced my husband for “30 more minutes!” I finally rolled out of bed, greasy-headed, no shower. The doctor gave me results any other patient would be happy to hear, “everything is normal”. No more POTS, no cardiac issues, perfectly healthy, but no answers to why I was so exhausted and sleeping so much. I cried. My doctor said, “you should be glad nothing is wrong.” I was not glad, I was angry, because I knew something WAS WRONG. I became angry with the doctors, angry at my husband, with my self, and especially at God. My prayers obviously went unheard, I thought, until the next week I reluctantly went to a nurse practitioner near home to beg for drugs to keep me awake. She’ll never know how appreciative I am that she understood my exhaustion. I was closer to answers when she mentioned narcolepsy. Unknowingly, I still had a LONG way to go.