Post
by lcosborn » Thu Jan 05, 2012 11:20 am
I am extremely grateful for these comments, and I really needed support and solidarity around this. I have had EDS and other symptoms for 27 years, and memory and concentration problems going back to first grade. I was the classic supposedly "gifted" child who was continually punished for non-performance.The refrain of my childhood: "If only you would apply yourself..." Little did they understand, and little did even I fully understand, the Herculean effort it took me just to make it through the day and perform the most basic life tasks.
My current emotional task is to make sense of all of this, to construct a coherent life narrative that creates some order out of chaos. SleepingBeauty puts it like this, and this is part of what I need to sort out:
"There are symptoms that are clearly directly caused by OSA (e.g., sleepiness) and those that can be caused by OSA (e.g., memory problems, irritability, depressive symptoms, anxiety, etc.). Then there are the consequences to our lives of long-term untreated OSA (e.g., damage to careers from poor job performance, social impairment, etc.)."
Carnage was another word she used; I'd add devastation, rubble, ruin. Now my task is to rebuild.
Rebuilding is hard, partly because I don't know who I am anymore. Throughout my life, I developed a whole series of coping strategies, consciously and unconsciously, that shaped my identity. Getting the diagnosis was liberating, but also created a lot of confusion. I don't know what parts of my mental and physical life, maybe even my personality, were determined or shaped by sleep deprivation.
I can't and couldn't have predicted the subtle and surprising changes I would undergo with proper treatment. This sounds like BlackSpinners reference to sleep deprivation studies.
For example, I used to lose my keys multiple times a day. I tried a million strategies to develop habits so that I wouldn't lose my keys, but to no avail. One day I realized that since going on the Bipap, I had only lost my keys one time in the previous 6 months!
I also used to spend money compulsively. I would get lost in big box stores for hours. I would spend hours on Amazon.com or eBay. One day, about 6 months after I went on the Bipap, my husband asked me if I had opened up a credit card without telling him about it. He said my spending had dropped so drastically on our shared accounts he was scared that I had a hidden card somewhere. I didn't even try to stop spending money; I just found that the volume on my compulsions had been turned way down. Now I can go in and out of Walmart quickly and find long sojourns to Target boring. I continue to be massively in debt however, nearly all of it student loan debt (it is hiding a great deal of compulsive spending) from a doctoral program I was kicked out of the same month I got the sleep apnea diagnosis. (The lost doctoral program would be a big part of the carnage. I couldn't maintain the focus I needed to bring my dissertation to completion.)
I also used to be extremely sensitive to physical spaces. If my office was painted an ugly color, for example, it would drive me into a state of madness. Disorder would make me crazy. I would tidy up other people's spaces and drive them nuts. I would begin projects in my mother's house, which as you can imagine would cause major conflict. I once totally gut-rehabbed an office I had in an old building, and it cost me several thousand dollars. Everywhere I went, I would mentally paint and knock out walls. I never, ever do that now. In fact, post-Bipap I lived in a room in an older house that had extremely ugly, busy, old-fashioned and peeling wallpaper complete with water stains. In the past I would have actually stripped that wallpaper off the walls without the landlady's permission, it would have made me crazy. But it didn't even bother me at all. I didn't feel the slightest urge to paint and order things. This all sounds as strange to me as it probably does to you, believe me. I had no idea where that compulsion to paint and clean came from. But I don't have it now. I don't go into someone's office and want to re-organize their books, or re-arrange their furniture. For years I thought and behaved that way; now such things don't even remotely occur to me.
I used to speed while driving all the time. If I was in a car, I was going 10-20 mph over the speed limit. Worse still, I was often eating, texting, applying makeup and talking on the phone at the same time. I once got two speeding tickets in a single week. Now I go the speed limit without even trying. I didn't even notice it at first, but after a few months, I was suddenly thunderstruck by the fact. My hands are always at 10 and 2, and yet I made no conscious effort to be a better driver. I just am.
I think I got into a bit of a state of learned helplessness over the years. My behavior and interior life were erratic, out of control, in ways they no longer are. But for years I was constantly putting massive effort into "getting things together" and failing in my attempts. After awhile, all that effort just seemed futile. Worse still, I developed extreme aversions to painful areas of my life. Dealing with my money issues sends me into a panic state, even though without trying my spending and debting have fallen dramatically. After years of being unable to do simple things like not lose my keys, I lost faith in myself and my abilities. I've been fired from jobs and have strained relationships directly due to sleep apnea. Bosses don't like finding you asleep under your desk at work, friends don't like finding you asleep on their couch at their kid's first birthday party, family members don't like it when you conk out right after opening Christmas presents.
The other day I went to see a psychologist to start trying to make sense of all of this. I described some of my aversions to her. She said, "Has anyone ever told you that what you are describing sounds very typical of people who are trauma survivors?" I burst into tears, surprising myself. I've been through hell, but a trauma survivor? I was never even insulted as a child. I wasn't abused, raped, didn't witness violence, haven't had any major accidents, don't abuse substances. But I do feel like a traumatized person. I feel like something traumatic has happened to me.
That's why I got on these message boards and looked up PTSD. I wanted to try to make sense of her comment, my reaction to it, and what it could mean. I need to figure out what things are symptoms of apnea, what things are consequences of apnea, and what things are related to some other condition that may or may not have been exacerbated by the apnea.
Mostly, I was looking for what I found: a little bit of solidarity, a feeling that at least part of my experience was shared. Thank you all so much. I am tremendously grateful to all of you for your wisdom and kindness, and to mstevens for clearing things up for me regarding PTSD. The fewer diagnoses I have, the better!
