Sunday, January 9, 2011

Silence of the Sleep Apnea Patient

At the risk of showing you how goofy I really look and letting it all hang out (well, almost all--have to keep this G-Rated, after all) I am going to share with you what my intrepid husband and I have come up with to make this CPAP ordeal a bit more livable.  (Yes, another post about me and my sleep problem---I know--when will I get off my pity pot and on to more interesting things?)
But, see, it's a thorny problem.
  I  love the blogging community; people are so warm and caring.  Where else could I post about something as mundane as sleep apnea problems and have so many cheering me on? 

 
 I decided to look up some information on how other people live with their sleep apnea equipment and found some interesting ways people have coped, especially on a website dedicated to, what else? Sleep Apnea.  I'm glad I 'm going through this whole process in the winter, when things are slow around here anyway, because I have more time on my hands to do internet searches and improvise some stuff of my own.

I have four new face masks I am trying out.  I so wanted the nasal ones that just go over the nose to work, because even though I look much like Miss Piggy with a silicone snout, (but alas, Miss Piggy is better-looking than me) the small mask would be less cumbersome on my face.  I spent the night trying to sleep with first the smallest nose mask and then the bigger one, but try as I might, they just cut into my face in all the wrong places, most especially my upper lip and annoyed my skin terribly.  You wouldn't think something so small could be so annoying, (heaven help me if I ever have anything major go wrong with me, I'm such a baby, I know)--but the masks hurt, making sleep impossible.  I switched back to the full face mask the tech gave me in a Large size (up from the Small I had previously) but I'm thinking I may need a Medium instead.  Sigh.  The large mask goes under the chin and if I move my chin at all the air leaks out and causes the CPAP machine to go into high gear and ramp up the pressure--then I seat the mask correctly, but find it really hard to breathe with all that air pressure whooshing and I'm wide awake once again, until I reach over, hit the Off button and get things straightened out and restart the machine. 

One of the things that bothered me the most about the mask was the tight fit and the silicone face mask parts annoying my skin and leaving marks.  There's some neat padding you can buy that is disposable (and expensive) online that goes between the mask and your face, but since I don't have a lot of money to spend on more stuff, I did some digging around in the Apnea site for fellow do-it-yourselfers.   I found a pattern from one member who made her own padding from worn out t-shirt fabric. What an interesting idea!   I never mention it much on my blog, but I sew extensively and love to make clothing, so I have a stash of fabric of all types and kinds.  The trouble is, I didn't find this particular thread on the Apnea site until nearly midnight, so we had to improvise quickly as it was by now bed-time.

So, without further ado, (brace yourself!) here is a picture of me and my face mask.


OOOOPSSSSSS..........ok, that's not me....that is Anthony Hopkins portraying Hannibal Lecter.....never mind....Ok, brace yourself again:

Hey, unfair!  Hannibal's mask looks more comfortable!
So much silicone, so much digging in, so much annoyance, and this is the most comfortable mask of the four I have to choose from.  Until Carl came to my rescue with t-shirt fabric at one in the morning. (Wait, it gets better, trust me, you won't have to avert your eyes.)

"Here, Karen, put this over your face."  (Please,think of the children!)
 Ok.  Putting it over my face...

 Grab your mask and put it on.......wait, I can't see...which end is up?


Fidgeting, fidgeting....


Ah, this is much better....I look like the Unknown Comic (remember the annoying guy in the brown paper bag?) except he had eye holes, lucky dog!  Also note the polar fleece cover I sewed for the hose--according to websites that sell the covers, having a cover on your hose not only keeps the warmed air from cooling off before it reaches your face, but makes the hose look 'less institutional and soothes the patient into feeling more comfortable'.  (Hmmmmmmm.....now I suppose I'll have to sew four different covers in different colors and prints for the four seasons  so I can stay 'comfortable'. This is my 'Winter Hose Cover'.  )

As ridiculous as this looks, I had the best night of sleep so far wearing a scrap of t-shirt fabric over my face between me and the mask.  Of course, I couldn't see a blasted thing, which made having to turn the machine on and off when the pressure ramped up too high due to some unknown reason quite the experience.  I know Carl sleeps better not having to actually look at me in the mask, LOL.

See, we're getting closer to Carl's idea of a plastic bag over my head.....if I keep him up any more nights, he might just 'forget' to add a safety vent to the bag.  (I'm kidding.)

I hope.....

13 comments:

Tootsie said...

I am proud of you for having a good sense of humor about this. I know another woman who has gone through the same ordeal. Her blog is stupid is as sister does....on blogspot..her name is Justine...and she had similar issues with the machines...maybe she can give you some tips...I am not sure if she still needs it or not...
I will keep you in my thoughts and prayers friend...you are right...blog land is full of love and support to those who need...I know...I've been here too!

Alison said...

Oh Karen, How very brave of you to post the photos of yourself in your mask. I laughed like a kid when I first saw the pic of Hannibal Lecter, it is so good that you are keeping your sense of humor. Good for Carl for being so supportive, and you for continuing to try to figure out how to make this work for you.

Love the winter cover, will the spring one have flowers on it?

Sandy said...

ROFLMBO!! Sorry, the photos sure made me smile... I put batting on the inside of the plastic parts that touched my skin(did not work) but the T'ee shirt idea looks good. (well in theory anyway).
Your a brave soul sharing those photos with us!
Congrats on a good nights sleep!
Sandy

Granny Lyn's Garden said...

Karen, what a wonder you are!!! You so impress me with your humor.Are you sure you weren't a comedian in your other life. :) So glad you had a better night sleep. Looks like you are on the right track.
God Bless, Lynda

xoxoxo said...

Oh no! you did it! Now we ALL have to post silly pictures of ourselves! You try eye holes, or a ski mask with nose and eye holes! What a process!!! So glad you go some sleep. I am loving this story--sometimes garden blogs just depress me because I can't do anything in the garden--so this is a interlude.

Rosemary said...

Karen Way to go to on the stick with itness. Not laughing at you but laughing at the trials and tribulations. The silence of the lambs photo had me laughing out loud. What a " Good" hubby you have.

Anonymous said...
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Toni - Signature Gardens said...

Bless your heart! I know this not a laughing matter, but your post had me cracking up! It does sound like you've kept your sense of humor through this ordeal. And how ingenious you are with the T-shirt padding. Leave it to y'all, you will come up with something that works, no doubt in my mind. You have built a rock quarry; surely you can fix a silly ol' CPAP machine. I'll say it again, bless your heart. Hang in there!

Anonymous said...

I CAN NOT believe what you have to go through. My gosh is this an uncomfortable looking contraption. The Miss Piggy comment was hilarious. I am so glad you got your humor back. Like Toni, I too was laughing, not at you, but this is such a comical affair, seriousness of the matter aside. Your T-shirt idea is fine, but don't give up on Carl and his inventiveness. I bet he may come up with something worth patenting.

Carla said...

My mom just got one. She hates it. I am sharing the t-shirt idea. GREAT idea!! She feels like she is suffocating, feels just like Hannibal, and has threatened our lives if we take a picture of her. That hose cover is a good idea too...

Karen said...

Hello Everyone, thank you so much for your continuing support with this long, drawn-out process of learning how to sleep again.



I'm glad you found this post to be funny (I hoped it would be seen that way) and go ahead and laugh, I know you're not poking fun at me--laughter is the best medicine, after all. Sometimes I feel like crying, but if I would, then I'd just have more trouble breathing. ;-)

Lana from Farm Life Lessons said...

I am a new reader to your blog, but this post has had me in hysterics. My husband has slept with a CPAP machine for years.

On a brief serious note, my husband's cousin died at 42 years of age from sleep apnea, so it can be deadly serious. However, you have put this frustrating interference of a very important function into a light that gives it such humor.

I have pictures of my husband lying back in bed watching football with all our nieces and nephews gathering to listen to his football frenzied yelling as entertainment, and they start asking about the mask hanging from our headboard. He put it on and they all began rolling. I snapped a photo with him holding the hose in the air like an elephant's trunk...one of the best shots ever! I may have to post it on my blog, but he might not be as brave as you --- which I appreciate!!

My husband had creases in his face from his mask...I also sew and might see if he'd like some of your soft face cushion ideas for himself. Maybe I'll find soft material with FISH on it!

Anyway, I love your sense of humor. The pictures really brought your story to life and it has helped this family to better deal with sleep apnea, perhaps to even find more physical comfort!

kaney said...

Studies are being done on the relationship between sleep apnea and congestive heart failure. Patients with obstructive sleep apnea may suffer damage to the right side of their heart since it has to pump harder in order to support the added effort of their lungs attempting to overcome the airway obstruction. A test was done on forty-two patients with heart conditions. Nearly half of these patients had severe sleep apnea that had not been diagnosed prior to the study.

Phyto B