KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
My eyes are so dry today. It feels good to let the lids roll down and wash away what feels like finely ground grains of sand. To let the tears soothe the red burning and itching. Yes, allowing my eyelids to close brings a lot of relief but does make it difficult to accomplish my daily tasks. And those must be done in spite of the runny eyes that are tough on mascara and murder on eyeliner.
My eyes wouldn't bother me so much if the darn machine wouldn't leak, shooting a stream of humidified air into my eyes while I try to sleep.
But sleep itself has always been a problem for me.
I can never remember a time when I was able to just walk into a bedroom, climb under the covers and go to sleep. Not even when I was a young girl. As I grew older, I did get sleep of course, usually in the morning or by napping in the afternoon. But I finally reached a point where that wasn't working any more. I was tired all of the time and no matter how many hours I spent asleep I wasn't getting any real rest. I was physically tired, but even worse, my cognitive skills were slowly, slowly declining. This process took place over many months, and years during which I tried drugs, therapy, meditation, good sleep hygiene and any other suggested system or therapy that came down the pike.
Until finally I saw an ENT for GERD (Gastroesophageal reflux disease). After numbing me up he stuck a pipe through an opening that had never before experience penetration. At the end of his tube he had a camera that showed some pretty clear signs of inflammation of my larynx, caused, he felt by the stomach acid that was traveling back up my esophagus.
After muttering about the "architecture" of my mouth and neck he asked if I ever experienced any fatigue. If I ever had to get up in the middle of the night to use the toilet. Only five or six times I told him.
These being only some of the symptoms of Obstructive Sleep Apnea, he asked me to make an appointment with the sleep lab for a split study (first half without a mask and second half with one).
I dragged my husband along with me as there had been too many times when he had stopped breathing in the middle of the night and I had to wake him. They wired us up to monitors for everything from EEG, EKG, oxygen saturation, leg movement to REM sleep. The techs showed us the command center where they could keep an eye on us if our breathing or heart rates changed dramatically.
And then we got to see our rooms, separate rooms unfortunately, but it was the only way reliable information could be obtained. The rooms looked more like they belonged in a 4 star hotel than a medical clinic, with plush bedding and upscale high thread count linens.
Halfway through the night the techs came in and put nasal masks on us (a small triangle cup that only covers the nose) and allowed us to return to sleep. Oh yeah, that happened. I later learned that my husband fell right back to sleep, but I think that had more to do with 27 years spent in the Marine Corps than comfort with a mask. It didn’t work for me, so a full face mask was tried instead. Using that I was somehow able to fall back asleep.
We were awakened at 5:30 am and sent home. After perhaps two hours of sleep in a mask I felt more energized than I had in years. It had been so long that I had forgotten what it felt like to wake up in the morning looking forward to the day ahead.
Two weeks later we got the results of our tests: Both positive for Obstructive Sleep Apnea (OSA). Although my husband’s apnea was considered mild, it resulted in a marked drop in his oxygen level and would require therapy. I was diagnosed with severe apnea, with an average of over 70 episodes of apnea ( a complete cessation of breathing for over 10 seconds) and/or hypopnea (reduced airflow for 10 seconds or more) every hour. That means that on average, my breathing stopped or slowed once every minute. Naturally, not breathing caused the oxygen level in my blood to tank as well.
I wondered then if I knew on some subconscious level that sleep was actually hazardous to my health. Over the years I had tried everything to fall asleep at night with little or no success. I finally resigned myself to an aberrant circadian rhythm. When I was awake, no matter how tired or ineffective, I was at least breathing.
At night, when you sleep your body regenerates itself. Your blood pressure goes down, your digestive system slows, your muscles relax, your heart rate slows and your body temperature drops. Your mind puzzles through and organizes the information received during the day. Much of this activity occurs during deep sleep.
When you stop breathing, your body is flooded with adrenaline to restart respiration. That constant cycle of lowered oxygen, higher carbon dioxide and adrenaline is not good for your heart. According to the conclusion of a study published in the New England Journal of Medicine:
CONCLUSIONS
The obstructive sleep apnea syndrome significantly increases the risk of stroke or death from any cause, and the increase is independent of other risk factors, including hypertension
The National Institutes of Health (NIH), includes the following risks of untreated obstructive sleep apnea:
Increase the risk of high blood pressure, heart attack, stroke, obesity, and diabetes
Increase the risk of, or worsen, heart failure
Make arrhythmias (ah-RITH-me-ahs), or irregular heartbeats, more likely
Increase the chance of having work-related or driving accidents
Given the unpleasant alternatives to not treating this killer disease, we have learned to become "hoseheads," and fortunately there are no mirrors in the bed area of our bedroom because I am sure we look rather insectlike, with masks, straps and hoses attached. I know he does. But I am probably still gorgeous.
Wearing a mask and using a CPAP (Continuous Positive Airway Pressure) machine is not a comfortable or easy way to sleep. The machines can be noisy, the hose can get tangled, the mask can be uncomfortable or even worse, it can leak. When it does leak, that humidified air shoots right into one's eyes, even when closed. But a CPAP machine applies enough steady pressure to keep the airway open. As long as that airway is open, breathing can occur. A wonderful forum of experienced and new users is CPAPtalk.com. From them I learned about what to expect at the sleep study and how to choose and get the most out of my equipment.
The NIH has a great animation that shows just how OSA happens. I can provide a link, but I can't figure out how to embed it.
Obesity is often associated with OSA, but is not always present. Going to the bathroom often at night is not unknown. Snoring tends to be part of the symptoms, but the strongest indicator is daytime sleepiness. And because the brain is constantly being wakened into action, a reduction in cognitive function is frequently present with memory lapses.
There are alternatives to using a mask and CPAP machine that sometimes help some people: dental devices that pull the bottom of the jaw forward, giving more room in the back of the mouth and surgery to remove tonsils, adenoids and even part of the tongue to enlarge the airway.
The mask and machine are the ones that seem to work best for us. My dentist mentioned a device to me that looks a bit like an inside out baby pacifier. He said it looked uncomfortable and I burst out laughing. Unfortunately, it didn't work for me, but was a lot more comfortable than standard therapy.
As our population ages and obesity tends to increase, OSA will become a larger problem. Hopefully that will spur some thought of better ways to correct the condition because the ones we have now don't always work for all people.
And so there are mornings when the mask leaked the night before, and my eyes are tired all day. Or the masked leaked and I did not receive enough pressure to allow me to breathe all night long and still suffered apneas. It is not a perfect way to treat this disease, but at least I no longer fear driving. I can think again. And some mornings I actually wake up looking forward to the day ahead.
Moderator's Comment
Upcoming Wednesday Diaries
Sep 21 boatsie
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ulookarmless is the moderator of KosAbility’s Wednesday diaries and maintains that schedule. If you’d like to sign up for an open Wednesday, send me a private message or email me at ulookarmless[at]gmail[dot]com.
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Nurse Kelley (KelleyRN2) is the moderator of KosAbility’s Sunday diaries and maintains that schedule. If you’d like to sign up for an open Sunday, reply to this comment, send her a private message, or email her at KelleyRN2[at]gmail[dot]com.
I will be visiting my oncologist this afternoon, Nurse Kelley will be your moderator today, play nice!
Peace
CJ