I\’m having a sleep evaluation at a sleep clinic in a hospital on Tuesday. For some reason, this is my first eval for this, though I\’ve had sleep disorders since the age of 13. Time and again I\’ve wondered as to why it is my doctors have overlooked (been so negligent?) intrinsic parts of my health. Since I\’m having the sleep eval, they want to evaluate me in my natural sleep state, which means no meds. I have been on sleeping meds since June of 2002, and this no-meds thing is turning out to be really hard, worse than I had imagined.
Since 6-02, the only times I have experienced disrupted sleep have been when I have grown immune to my meds. This happens every three months or so. First Sonata, then Ambien, then Trazodone, then a combination thereof, then Amitryptiline, then some other thing I can\’t remember… until finally I had grown resistant to all of them. Understand, too, that after three months or so of sleeping fitfully for the first time in nine years, I was reaching the point of insomnia, sometimes not sleeping for two days before my doctors could finally get me a new prescription. But the insomnia didn\’t happen right away. Over the last few weeks on any particular sleep med, it would take me longer to get to sleep, I would awake during my sleep in intervals that ranged between 20 minutes and two hours, and after between two hours and five hours, I could simply not get back to sleep, no matter what medication was taken. Then would come the night where I just couldn\’t sleep. Then another would follow. Then a medication change, which caused me to sleep a fitful six to seven hours. Bliss.
But this is different. I\’ve been on a high dose of Valium for only a month now, which means that it is still basically working. Once I got the appt. for the sleep eval, I had to stop taking it. The first few nights (Tues, Wed, Thurs) were tolerable. I managed to get to sleep after my usual twenty or so minutes, and then either woke up quite a bit or slept restlessly. When I awoke today, though, after seven hours of sleep, I suddenly found myself pre-June 2002 again, which meant I awoke to actual paralysis. I couldn\’t move my body at all for I don\’t know how long. Eventually I managed a gradual sliding motion of an inch here, a tiny shift of my weight there. By ten a.m. Will had somehow managed to put me in a fucking position which lasted all of five minutes (I think? very hazy), after which I collapsed again and passed back and forth between a conscious and unconscious state.
I hadn\’t remembered this serious amount of pain and total lack of control of my body. I\’d blocked it out on purpose, because there is nothing more embarrassing than having to admit to your lover that you have needed to pee for the past two hours but are physically incapable of hauling yourself the fifteen feet to the bathroom. Will brought me breakfast in bed sometime around noon, by which point I had finally managed to prop myself up right. I didn\’t even have the energy to eat the soup, though I badly needed it. I managed to make two phone calls from bed and to lie there incapacitated and wondering how in the hell I actually managed to live my life this way for nine years and how for eight of those years my doctors could tell me with all seriousness and faith in themselves that there was nothing wrong with me and to shut up and get some psychological help because I was a hypochondriac.
Hypochondriac my inability to piss, you fuck heads.
By the time I managed to get myself to the toilet, I was so exhausted that I couldn\’t remember which muscles to use in order to wee. I sat there, collapsed on top of myself for I don\’t know how long before finally dazing off and relinquishing control of all the right muscles. Hauled myself back into bed where I alternately froze and burned, ached and shivered, and could barely move. Until three in the afternoon I was lying there — essentially six hours of inability to move — before I finally came to my senses and asked Will to get me a protein shake. Chugged that down with some 800mg IB Profen (the only painkiller I\’m allowed right now, despite my various assortment of other prescriptions) and some vitamins, and within thirty minutes I had the energy to haul ass into the shower. After that, I managed to get dressed and climb back into bed.
Other than cleaning the two mirrors in the bathroom and the two glass tables in the apartment, I\’ve done nothing today but lay on the bed or couch and attempt to work up the energy to take care of all the shit I need done. In between glass cleanings, I had to lay back down and rest. It\’s fucking ridiculous, this is.
By ten tonight I was so exhausted I could hardly keep my eyes open, so I laid down to go to bed once Will had left for the bar. Sleep, of course, failed to come. Three hours later, it has still failed to come, and so I sit here freezing off all extremities to document this fucking mess.
Sunday, another day. Monday, another day. Tuesday another day. By then, I won\’t be showering or dressing myself. I\’ll be alternating between either sleeping eighteen hours a day just to be able to get enough sleep to build enough energy to get out of bed, or I\’ll be spending eighteen plus hour intervals desperately trying to get to sleep while attempting to not disturb Will, who\’s been sick for two weeks. But Wednesday morning I am released from the hospital, and I get to go home and take my blessed Valium, and sleep like I have not slept in a year and a half.
I remember those first days on Sonata like a dream come true. Within a week, my needing 12-15 hours of sleep dwindled to 10. I had energy like I couldn\’t believe. Then suddenly I was getting by on five to six hours of sleep a night and feeling the best I could ever remember physically feeling. It was incredible. For the first time in my adult life, I felt human, and I knew that I had been right. There had been something wrong with me all that time, something really wrong that no one had managed to put a finger on. Then in one accidental doctor\’s appointment, I heard a word I hadn\’t thought of since I first diagnosed myself to the disbelief of everyone around me at age 13. That? You can\’t possibly have that. You\’re just going through adolescence. It\’s normal. Stop whining. What\’s wrong with you?
The beast has a name, and it\’s not in my fucking head, you assholes. It\’s in my goddamn DNA.
After monitoring my \”sleep\” on Tuesday night, whether it ends up being a totally sleepless night or a continuosly interrupted eighteen hours, they\’ll HOPEFULLY be able to pinpoint the exact problems and do something better than cycling me through every sedative on the planet.
I need my sleep. Without my sleep, I get sick, and quickly. As I was laying in bed today, I kept returning to two thoughts: how in the hell did I manage to live like this and accomplish even what little I managed to accomplish since the age of 13, and two, how damn lucky I was that I forgot the name of my orthopedist and instead scheduled an appointment with the head doc at the practice, who took about two minutes of looking at my chart, asking me questions, and feeling various points of my body before saying: \”You don\’t have carpal tunnel syndrome. You have fibromyalgia. Go see a rheumatologist.\” Luck and two minutes to solve what eight years and scores of doctors had not been able to. Thank you, thank you, thank you, Dr. M., for giving me the opportunity to see that I really do have a life out there that I can live, no matter how odd and reliant on medicine and others that it is going to be. It was more than just being misunderstood, and I\’m not a fuck up. Which is why this is no longer called Stories from a Recovering Fuck up, because at this point I feel like I am about as recovered from something I never was as I will ever be.
And I\’ll get mine. Just fucking wait… until Wednesday or Thursday, when I\’ve slept again, at least. After that, fucking watch your back. Nobody, no disease, no disorder, no syndrome, no symptom, controls my life other than myself, and I\’m going to fucking sock it back to you until you have no idea what hit you. \”All that, from the fuck up? Holy shit.\” Yes, all that. All that and a bag of fucking chips, so kiss my honky disabled ass, you bastards. You\’ll see. Just fucking wait.
