I know why the caged horse jiggles.

I’m kind of excited.

I tried the CPAP machine again the other night and took it off after a few hours of it driving me bananas. I thought it was hopeless, but, I read up on people’s experiences a bit more and it seems everyone has a difficult time adapting and the best advice is to go in with a positive attiutude… So, I tried again. This time with a smile. It was still a nightmare. Mine is a body that needs to move in the night. I’m in a lot of pain when I stay in one position, so I toss and turn quite a bit. EVERY time I moved, the mask sprung a leak and I had to come awake to adjust it. It doesn’t fit the bridge of my nose, so I have a band aid and a wad of toilet paper holding in the air at the top of the mask. The band aid fell off three times and I kept getting up and getting progressively bigger, stronger ones. I felt like I woke up 100 times when my mouth dropped open and the air filled my cheeks and made them flutter like a skydiver. I woke up a few times with pains in my belly from trapped gas and air… HOWEVER, look at my Zeo graph from last night:

If you’ll recall, my graphs have a tendency to look like this one ~ the top line being “W” for “Wake”:

So, I’m kind of excited. Maybe I was awake a lot between 11pm and 3am (as you can see, the first picture only spans 2am to 10am and I turned out the light at around 11pm) and I woke up briefly when I moved in the night, but not enough to count on the graph… And maybe, just maybe, the CPAP stopped the constant waking from the apnea that I’m usually not consciously aware of, but which affects me throughout my waking life…

In the last few weeks, I finally got some abnormal tests, which shouldn’t make me happy, but it DOES. I have sleep apnea ~ I was waking up 49 times an hour! ~ I have low zinc and iron, I have no good bacteria in my gut (thank god no one put me on antibiotics; that could be pretty dangerous). There are some natural interventions that might actually make me feel much better.

This morning, my eyes are blood shot and my neck is killing me and my back is very stiff from trying not to move in the night, but I’m hopeful. I’ve also felt stronger in the last week since my big headache went away (I still have a daily headache, but it is my normal, manageable one). It’s interesting ~ I’m in the same physical pain, I’m being hit by the same ol’ exhaustion, but I’ve been able to keep up with my stretches without injury (I’m being very careful to take a hot shower or bath before stretching so my muscles are warm)… I’ve been able to eat rather than feeling too fluish to be bothered… I’ve been able to watch a movie and laugh… Each of the last 4 days I’ve taken over 2,000 steps. By comparison, when I had my headache it was more like 500 and, in the weeks before the headache, it was 1,000-1,500. I’ve been jiggling my legs again. I know that sounds weird, but I was always a jiggler while sitting or watching TV ~ my feet would be moving ceaselessly or my knee would be bobbing up and down. It always distracted my husband. I was the girl in the movie theatre that was making your seat shake from down the row. That movement totally went away with the exhaustion. I sit, bricked, like a lump of concrete, no interaction, barely able to turn my head or answer a question. Lately, I’ve noticed the jiggles return. I told my acupuncturist that I felt like a racehorse in the cage before they go down the track. Like I want to sprint but I’m caged and antsy. I know why the caged horse jiggles.



To those of you out there that use a CPAP machine successfully, I applaud you. So far, my experience has been a little slice of hell.

I picked up the machine and was fitted for the mask last Friday. She gave me a “nasal pillows” mask, which fits into your nostrils, but does not cover your mouth. She didn’t ask me if I had allergies or nose issues and I had done zero research, so, I had no idea what to expect. For the rest of Friday night and all day Saturday, there was pain and pressure in my sinuses behind my cheekbones and under my eyebrows. My nasal cavities swelled up to the point that I couldn’t breathe through my nose. It felt like someone had stuck a hose blowing pressurized air up my nose ~ oh, because SOMEONE HAD STUCK A HOSE BLOWING PRESSURIZED AIR UP MY NOSE! Godawful. That got me doing research. I can look forward to sinus infections, upper respiratory infections, dry throat, swollen and sore nasal cavaties, bloating, burping, farting, sores and indents on my nose and cheeks, stiff neck from the S&M-type headgear, the inability to move in my sleep, having to purchase gallons of distilled water every week, dry eyes from the air vent, constant waking from the noise of the machine, 20 minutes of intensive cleaning every day to lower the chances of infection, and a HUGE BILL that never goes away because you have to replace all the components every couple months.

But, both my GP and the Good Doctor were incredibly excited that the sleep study found something that might help my plight, so I’m trying to remain positive. After doing tireless research for 4 days, I went back on Monday afternoon and got a different mask that covers my nose and mouth, thinking that would do the trick if my nose was stuffy. My husband bought me a basin, sponges, dish soap, and distilled water. I washed everything carefully. I read all 3 user manuals. And, last night, I descended into CPAP hell. The headgear pulled my hair and, in order for there not to be leaks under the mask, it had to be so tight around my neck at the base of my skull that it felt like the Pulp Fiction ball gag or some sort of medieval torture device.

I fiddled with the mask until 1am, taking it on and off, smooshing it left and right, up and down, tighter and looser. It doesn’t matter that it is a full fask mask, you still can’t breathe through your mouth because your cheeks fill up with air and flutter. Then I fiddled with the hose for another half an hour: off the side of the bed, under my pillow, under the covers, over my shoulder. I fiddled with the machine for another half an hour: humidity up, humidity down, hose warmer on and off, exhalation easier and harder, ramp up, no ramp up… And then I tried to sleep to no avail. I was hyper-conscious of the sounds, of not moving, of causing a leak, of the position of my neck… The machine kept revving. I don’t think it’s meant to do that. It would be a continuous soft pressure and then REV into higher pressure, but only for a second. Every time it did that, I came awake again, plus I had a bad pain in my stomach, my guess is due to swallowing air. At 3am, I pulled the thing off. But, the damage was already done to my precarious brain. It was like I had watched a horror movie and drank a quadruple espresso right before bed. I never quite went to sleep, I had fitful dreams about failing at tasks and dying from illness.

Today, after three really good days, I feel terrible. I’m shaky and I can’t breathe well and my neck is tweaked and my head is killing me. I may try again tonight, but I’m scared now. Literally, scared. The night before last, I had the number one best night sleep of the year. 9.5 hours and only a few times waking up. I was on the upswing. My symptoms are incredibly compounded by poor sleep, so I’m not very eager to try again and have another tortured experience.

My Dad warned me about this. He suggested a dental device that helps sleep apnea. I already wear a mouth guard, so that might be an easier transition. I shall call my dentist tomorrow.

Father knows best.