A Living with Sleep Apnea update

(I promise not to make this blog into everything about sleep apnea all the time, blah blah blah. But I think it’s an important problem to talk about, not only because it’s rather common but also because it’s not really talked about.)
I got a new mask yesterday. It’s “for women” or whatever (which means that it comes with a pink strap and is probably a little more petite) and has nasal pillows instead of a face mask. The nasal pillows blow air right up into my nose. It’s a very strange feeling, and my nose feels kind of strange this morning, like something was trying to stretch it last night.
I woke up at 2:30am sweating a lot and wide awake. I had to get up, get some water and find ways to make myself cooler. I had to turn the television back on. (Ten minutes later my mom came into my room, closed my door then went into the living room to watch TV for herself. At 2:30am! A little early…) I had to listen to myself breathing, the sounds were elevated to an unusual level. That’s something I need to get used to. I spent the summer drowning the breathing sounds out with a fan, but it would be much easier if I was just used to that sound by now. Or in the near future…
This morning when my alarm clock went off, however, I bolted right out of bed. It took me a few minutes to stop the feeling as if I was suffocating (when I’m aware of my breathing, I am much more apt to feel like I’m suffocating if I can’t breathe through my mouth properly). I ripped the mask off, stumbled to reach the button to turn the machine off then tried to reach my cell phone to turn the alarm off without falling off the bed. But overall, as of right this very minute, I feel a lot less sleepy. So here’s to hoping that feeling will remain.
<3. Melanie.Kristy

Dealing With Sleep Apnea Part 2: CPAP Therapy.

If you didn’t read my first post on my diagnosis (and leading up to it), you might want to do so here.

It took one more sleep study and an infinite amount of weeks (okay so really about another month after the second sleep study) to start CPAP Therapy. CPAP stands for Continuous Positive Airway Pressure. In short it’s a mask attached to a machine by a nose. The machine blows filtered air through the nose, opening my airways while I’m asleep. Normally with obstructive sleep apnea, apneas occur because while you sleep the muscles in your throat and tongue relax. With some people they relax enough to close off most of the airway in your throat. Sometimes this is also due to excess weight around your neck. Sometimes there are other reasons.

I was fitted for a mask and left to my own devices to get used to this new addition to my night time face. I spent nights waking up and throwing the mask off, I tried to figure out how to breathe so it didn’t feel like I was suffocating, some mornings I’d wake up without a mask and I’d have no recollection of taking the mask off.

My very first thoughts regarding this entire thing was: How fucking embarrassing. & I’m never going to be able to travel again. & How am I ever going to spend the night with… anyone, really? I don’t want anyone sleeping over while I have to wear this.

Every night is a struggle. I have to talk myself into getting up to fill the little humidifier part with distilled water. I have to wear my hair in a pony tail just to keep the back strap from sliding off my head. I have to move around while I concentrate on breathing. Air leaks into my eyes or my lips. If I don’t have a fan on, I can hear the leaking sound. I can’t sleep, it’s too close to my face. There have been a few nights that I’ve woken up because: I turned too much in my sleep and the machine fell off the side table, there’s air in my eyes, maybe I forgot how to breath, water (!!!) is hitting the mask and making a clicking sound, I am just not comfortable.

My mask is not the best mask for me. I’m working on trying to get a new one. But each mask is going to be a new adventure. Nights upon nights of trials until it fits correctly. Every three months I can get a new one. That’s another few days of adjusting. And who knows that I’m going to do when I have a cold? Go without, as my sleep specialist suggested.

I’m still tired. But seriously, I am one million percent LESS tired than I was before. I know what awake actually is. I am more aware. I don’t wake up refreshed and ready to start the day. But it’s likely that I never will. I’m just not a morning person. There have been a few times recently that I took the mask off in the middle of the night. Last week one night I was too hot to keep it on (how that happens in the end of September when there is no heat in my house, and it doesn’t happen in the middle of the summer I’m not sure…). I spent the entire next day in a daze.

It’s very obvious that I do need to continue with CPAP therapy, possibly for the rest of my life. ( I guess it depends on who you ask, my general practitioner said “hopefully not too long” but she also never got the reports from the sleep specialist about any of this).  I’m not quite ready to accept that, and this is evident during the nights when I can’t sleep because air is loudly blowing in my face and I just don’t want to contort my neck so the mask hits the pillow just right.


Dealing With Sleep Apnea Part 1: Diagnosis

I’ve always had sleep problems. Up until a few months ago I was tired all of the time. I drove around like a zombie trying to stay awake while I navigated my way to work. I spaced out and nearly fell asleep during slow times at work. I couldn’t get out of bed until I literally had just enough time to dress and run out the door. In high school I danced for at least three hours a week, I rode my bike everywhere (until I got a driver’s licence, that is) and still wanted to sleep through everything. In college during my freshman year I danced up to fourteen hours a week, and I worked out. I was still exhausted. And gaining weight. This past year I started waking up three or four times a night and my arms were asleep.

I don’t know why it took this long to say something, probably because of my increasing frustration with doctors (though that’s a story for a different day) and also due to my impatience. I don’t want to wait however many months to be tested and retested and maybe something might get figured out…

But anyway, back in March during the second half of a physical (for some reason I had the first half in November… I’m not sure why it worked out that way) I mentioned that I am constantly tired. All of the time. Some days I wake up feeling as I never even slept. My doctor’s suggestion? Exercise. Sure, okay, I’m open to trying that. I didn’t tell her that I danced my way through high school and college and was always tired then. I just agreed and started going to the gym to walk for a half hour after work. The only problem was, this exhausted me so much that by the time I got home I was so tired I could barely move. I quickly gave up exercise and told her, no it’s not working. She said my thyroid levels were okay, so we’re on to the next step —  she ordered a sleep study for possible sleep apnea.

I had to wait over a month for this sleep study, something that makes me infinitely frustrated with our health care. I’m grate that I have insurance, that I can afford to work on my health as I may, but it’s still frustrating that I can go for so long without real answers. Every night slept without treating sleep apnea is another night closer to heart disease, another night taking away from the restoration that happens during sleep and another high contributing to my slightly high blood pressure. After one terrible night sleep hooked up to wires and laying on a lumpy, hard mattress there is a diagnosis: severe sleep apnea. For me this means I stop breathing on average of fifty-one times per hour for up to fourteen seconds during each “apnea” (which, for me, is a combination of partial stops and complete stops).

Can you imagine the horror and relief? I simultaneously learned that I am not crazy for being tired all of the time, it’s not in my head at all and also that I have a severe issue that’s been seriously neglected.

Now I’m going to come right out and say that yes, I am overweight. And yes I know that in itself is a serious issue that cannot be neglected. It’s a serious issue that I deal with every single day.  And it may have some contributions to my sleep apnea. I only say may, because of a couple things. First off, my first sleep technician told me that sleep apnea can be the cause of weight gain. But not even that, I asked the sleep specialist who gave me my diagnosis if with weight loss I could make sleep apnea go away and she told me that, though weight loss could help, since I have severe apnea it probably won’t go away with weight loss. That made me rethink a lot of things about my life in general.

About a month ago my mom told me that I always snored, even when I was very little. Could this have been a slight indication of sleep issues right then? The sleep specialist told me that I have narrow passage ways, which does not help my situation. Right now I feel as if I’m a little doomed. I think it’s clear from my experiences that I’ve been struggling with this for a lot longer than I was aware of. It makes me wonder if things would be different right now if I had known for longer. I feel like I’ve wasted all of these years feeling depressed and just so damn tired, and there could have been so much other things I could be doing for myself and for others if I had been properly treated.

Does anyone else reading have sleep apnea? Have you gone through similar experiences and diagnosis for that or anything else, really? Tell me your story 🙂

More thoughts in my next post about Dealing With Sleep Apnea Part 2; CPAP Therapy.

<3. Melanie.Kristy

Taking the Negative as it Comes.

A reflection on what I’ve become. You know, I want this blog to be all about positivity–in my life and in yours. But how do you always remain positive, or at least only show that side of yourself without feeling like a phony? I guess some people can do that. They can only show one side and just purely forget about the rest.
So, since I refuse to turn this blog into something negative, or allow the negativeness to creep though, I am still going to keep it real. I am also going to make sure to maintain a balance or something. But here’s the deal, I keep on forgetting to write, my mind is blank and I can not help but feel overwhelmed by every single aspect of my life right now. A month ago I read an old journal entry I wrote one night when I was down and depressed and I felt sick to my stomach by the fact  that I used to feel so down like that. I remembered all those feelings, those nights when the darkness felt like it was going to swallow me whole. I don’t want my days to turn into that now. But I’m not letting them. I’m spending a lot of time watching movies and trying to be by myself so that I don’t feel like something else, something bigger than I am, is going to take over me.
I’ve been not hanging out as much as normal, I’ve been not going out of my way to make plans or keep in touch. I feel like my mind is void of things to say, void of topics to blog about, but at the same time I feel like slowly I am figuring out how to do this all.
Positive things I’ve been doing lately:
& Taking walks, even though sometimes they’re in the dark
& Going to yoga. or thinking about going to yoga
& I plan to get back into SLR photography old-school style with film and all
& Wishing I was in Portugal with a certain person who will remained unnamed
& Reading slowly
& Sleeping better than I can ever remember sleeping (and that, folks, is due to the CPAP Machine that has been perscribed to me for CPAP therapy. That’s another post for another day, though)
& Acting snobby about the products I put on my skin and into my hair. I deserve the best. (Also reminding myself of this when I’m eating. Because it never works out the same way, though the philosophy should be the same)
& Listening to Gala Darling’s Love & Sequins podcasts and Sarah Von’s Wanderlust Workbook
& Trying to wean myself off my addiction to Spider Solitaire. It’s become a sickness.
What do you do when you feel like the entire world is going to collapse in on you?

xoxo. Melanie.Kristy