chronic babe lives

So, diagnoses are a mixed bag. In some ways they bring relief. You know something is wrong with you; it’s making you miserable; but the misery is almost matched by the anxiety of not knowing what or why. At the same time, the relief is tempered by the depressing realizations that go along with these diagnoses, in particular those that can’t be cured. This is a typical story for me. On the one hand, I’m happy that these diagnoses-those from my adult years-have not been imminently life threatening. While many of them carry risks, most simply require lifestyle changes and of course, the requisite pharmacological treatment. So I have to take a handful of pills a day. Could be worse. While these medications come with their own baggage–weight gain being among them–I can live with them. Then we have things like celiac disease, a serious pain in the lifestyle change department, but I’ve dealt with it and continue to do so.  My conditions are treatable if not curable.

Now we have one of my more recent diagnoses, which is both incurable and virtually untreatable. Now, it’s not going to kill me, but it does have the rather unpleasant side effect of making me miserable on a relatively frequent. Welcome to the world of chronic idiopathic insomnia. I’ve had problems with sleep ever since I was an infant, but then again I had cancer and was pretty sick, so they were  a little more concerned with all those malignant cells taking over my body and less interested in whether or not the sandman visited me on a regular basis. As a child, my inability to fall asleep at appropriate times were often attributed to stubbornness and my chronically overactive mind. As an adult, people would constantly chide me for my consumption of coffee, lack of discipline in maintaining an appropriate sleep schedule, stubbornness (again) and so on. As an adult my lack of sleep and its accompanying problems were considered to be my fault, one more in a long line of lacks and deficiencies that I should be able to control if I was worth anything. I’ve gone so long having people blame me for my health problems that I’ve deeply internalized it. It’s been easy for me to blame myself for my increasingly debilitating insomnia. I’ll admit it; I’m a little angry. So here’s a big “screw you” to all of the people who’ve criticized my lifestyle choices and discipline. Many of you have no idea what it’s like to try to hold a coherent thought while going on four hours of sleep over the span of three days. Oh, and BTFW, it’s not the coffee.

The following explanation is provided by the American Sleep Association:

Idiopathic insomnia is a rare form of chronic insomnia that contains no visible signs of its cause. It is a life-long syndrome that seems to present upon birth, and is theorized as being the result of an underactive sleep system, or overactive awakening system, but no verifiably true origin or cause of the disorder is known.

It is known that idiopathic insomnia exists without the detectable presence of other sleeping disorders, medical problems, medication or substance use or abuse, any underlying behavioural problems that could cause poor or unfulfilling sleep, and any psychiatric disorders. It is also not the result of poor sleep hygiene. Idiopathic insomnia often occurs nightly, and may include short sleeping times, numerous nighttime awakenings that cannot be explained, and difficulty falling asleep even when the body feels sufficiently tired to do so. This all happens without the presence of any stress that may cause a similar scenario in others, no psychological or neurological disorders, and no medication or substance use.

One of the things that I take from this explanation is the comfort that it isn’t my fault that I can’t sleep. I’m not doing anything wrong; I didn’t do anything to cause this; and there isn’t anything that would have helped had it been diagnosed earlier. (This last point is pertinent because I tend to flog myself for ignoring my health problems.) The down side to this is that idiopathic insomnia like mine is incurable and resistant to treatment.  For years and years doctors have tried to help me get a decent night’s sleep and I’ve spent even longer researching sleep for the same reason. So far, no cognitive behavioral therapy has been effective and pharmacological therapy doesn’t make a dent. I can go for days without sleeping at all. I feel zombie-like, exhausted, and befuddled. It takes me two and three times as long to perform simple tasks. And since I’m an epileptic, I can’t drive in my sleep-deprived state. So, I stay at home and try to work. My scholarly writing and reading takes much longer, but I try. Around the house work often results in broken items and trips and falls, but in spite of the black and blue marks and the pain, I try.  During the past two weeks, I’ve slept a little more, thought it tends to be at odd times, for short periods, and not particularly restful. Still, I’ll take what I can get. My doctor warned me that I’ll never reach a point where I will experience “normal” sleep and feel truly rested, but I’m happy for what I can get. Oh, and apparently at least one other person is happy. My sleep doctor tracked down my internist in the doctor’s lounge so that he could thank him personally for referring such a fascinating (read: rare and unusual) case. Turns out less than 1% of the population has chronic idiopathic insomnia. Well, at least I’m making someone happy.


3 thoughts

  1. Such an honest post, Rhetoricat. I’m proud of you for writing this, and for seeking a cause and a cure, and for your perseverance!

  2. I’m sorry that the diagnosis doesn’t bring a number of good and effective techniques. I have had insomnia since an infant as well, but have always felt it was due to safety, abuse, and anxiety. I could be wrong, though, it could be something like this. So I do understand how hard it is to always be lacking in sleep and to never really feeling on top of things due to a restful sleep. Now you have two diagnosis that is around 1%, as Celiac’s is less than 1% of the population and I am also Celiac.

    Good and healing thoughts to you.


  3. Thank you for your kind reply, Kate. It is a struggle and one that is common among those with PTSD. My guess is that it’s probably a combination of both. Good and healing thoughts to you as well.

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