I became aware at a fairly early age that I did not sleep like other people. It was a difficult thing for me. Difficult to fall asleep, difficult to stay asleep and difficult to wake up. As a young girl I loved the late night fun of a sleep over, but hated, hated to stay the night. I could never get to sleep, I woke up all night, failed to get back to sleep and finally woke up exhausted and wanting nothing but to crawl into my own bed at home. When I hosted sleep overs I made it clear that sleeping bags were to be brought and no one would be trying to share the bed with me. Sleep was already a major issue for me.
I traveled across and out of the state to show dogs with my aunt. I never slept. We often left before dawn and I had only just fallen asleep. I couldn’t sleep in the hotels. I couldn’t sleep when visiting relatives. I just couldn’t seem to sleep.
By the time I was 12 I was already taking prescription drugs to “treat the insomnia, depression and fibromyalgia”. It never really helped. When my first baby was born I was awake for 6 days straight to say nothing of the attempts at finding sleep between night nursing sessions, teething, etc. By the time I was 23 and he was 1 I was so deeply, painfully, awfully tired that I submitted to a prescription for the well known sleep drug Ambien. A couple of years later I had a prescription for more than double the recommended dose and was still exhausted. All. The. Time.
The pain? It was out of this world.
It was during this time that I became aware of two things: one, that people who experience Fibromyalgia almost never achieve Delta wave/Stage IV/Restorative sleep, and that an experimental drug called Xyrem (also known as the illicit date rape drug, GHB) was now available for treatment of Excessive Daytime Sleepiness in people with Narcolepsy and being tested as a treatment for Fibromyalgia. The belief was that both disorders are caused by the lack of proper sleep cycles. It was also said that this was the only drug known to cause State IV sleep and that most others actually prevent that all important stage of sleep.
After convincing my doctor that it was for me, he had to become a registered Xyrem prescribing physician, write the prescription to appear as though it was being prescribed “on label” so that my insurance would cover the $3,000 per month prescription, and give me the benefit of the doubt in my ability to figure out how to use it, as there were no real guidelines. It was a terrifying, sickening and painful process, but after a few weeks I noticed that though I was still exhausted, lost almost 30 pounds and had intermittent shakes, I was without pain. For the first time in memory I was without pain.
I described it to my husband when the realization came upon me. As we were riding in the car I told him that I was “feeling funny”. I wasn’t feeling bad but I was definitely frightened of this wholly different feeling. It was through trying to describe the feeling to him that I realized that what I was experiencing was a complete absence of pain. “It feels like the world used to be made of cold, sharp steel. Everything, clothes, beds, the air, it was all cold and sharp. Now it feels like everything in the world is soft, like butter.” This was the best way that I could explain it. It was like the softness of a warm knife into butter had become me. I wept. Sleep. Who knew.
Almost one year to the day later. I conceived my second baby and the gig was up. This was not a pregnancy or breastfeeding friendly prescription. I’m not sure I can describe the full belly feeling of fear that took hold of me when I realized that I was going to be quitting the prescription and that the pain would likely return soon after.
I had to find another solution. Forfeit was just not an option. Now that I knew how it felt to live without pain I could not consider a return to the old life.