Saturday, January 8, 2011

Luke, I Am Your Mother

I realize this hasn't a thing to do with gardening or stained glass, but I thought I'd post another update of the fun n' games that are going on here.  Things keep getting more and more strange.  After the last post I wrote about getting used to the CPAP, on Monday night I went to bed resigned to hooking up to the hose and face mask routine.  After donning all my stunning headgear, I hit the Start button and settled down into my pillows, only to hear a loud whooshing sound coming from the back of the machine.  I thought maybe I forgot to seat the hose correctly on the fitting, but no, the connections were tight; it was then that Carl noticed the hose itself had cracked where it was attached to the connector.  He came to my rescue with Scotch tape and we ended up taping the hose shut for the night.

The next morning I called the sleep tech's office again and was told that I could pick up a new hose to replace the faulty one.

"You broke the hose already?! You must roll around in bed quite a bit and possibly stressed the plastic too much,"  he said.

I had already been warned not to yank the hose by it's 'tail' when disconnecting the air hose which I had been super-cautious not to do since all the components are costly.  I didn't know I wasn't supposed to move much while I was sleeping (or trying to sleep, that is).  As long as I had the tech on the phone, I asked him if it would be possible to adjust my mask as I have to keep it on so tight it cuts into my face severely, especially across my sinuses.  If it's not tight, it leaks.  And like I said last time, when the pressure builds up to peak, I am seriously worried that mask will fly off and cause mass destruction.

"Well, we can try you with a different mask," he said.  "You have to realize the machine has a built-in accommodation for leakage, and with you having the mask on that tight, you're probably getting a bit more air pressure than you normally would receive."

I wouldn't crank it down so tight if it wouldn't keep blowing my eyelids open, and I told him so.  Very annoying, having your eyelids flapping in the breeze, this I can tell you from a first-person account.  So I was set up for a 3PM appointment.

Joel drove me to the appointment and the friendly technician gave me a new hose and then decided to have me try a different face mask; another one that is 'full face' and even cups under the chin. This whole experience of trying on different face masks for about a minute or two and from that short time having to decide if it is comfortable or not, especially without plugging it into the apnea machine and bringing it up to pressure, is pretty futile, especially for me.  It's sort of like trying to decide if a new pair of shoes will be comfortable enough to walk in for eight hours a day by sitting in a chair and looking at them on your feet without walking around for hours.  Now picture the shoes being oh, say, 6" high stiletto heels with very narrow, pointy toes in about a Size 7 when you wear a Size 9. It doesn't take long to realize, ouch, you haven't got the right fit, but unfortunately, by that time, you own the shoes, er...mask.

But, I didn't know the fit was that bad until Wednesday night.   I strapped on my new full face mask and prepared to sleep, but once again, there was a leak, this time from the fitting on the mask itself, right where the hose connected.  I tried to sleep that night with this hissing sound and with forced air blowing on my neck and chest, but it was becoming nearly impossible.  Finally, at one point, I dozed off but had a very rough night and slept around 4 hours (like I said before, the machine keeps track of your sleep and usage).  The mask cut into the bridge of my nose and pushed my face together very uncomfortably, and by morning, when I took the thing off, I looked like I'd been pursing my lips all night and had vertical wrinkles running the length of my upper lips and chin.  Oh, here we go again, yet another wardrobe malfunction!

The next morning I got back on the phone with the technician again who wasn't sure what I was talking about when I said there was a leak in the face mask's fitting itself, but he kindly set me up with another appointment for Friday.  He asked me to try using the full face mask for one more night, as it does take awhile to get used to something new. I promised him I would try it again.

I finally took the Christmas tree down on Thursday and was looking forward to Carl helping me haul all the totes of decorations back up the steps to the attic when he got home from work. Carl is a master at packing the totes away efficiently.   But when he and David came home, I could tell Carl was not feeling well.  He sat down in my chair in the kitchen and said he thought maybe he was coming down with a stomach virus.  I encouraged him to go to bed and sleep for awhile but he was right, by 5PM he was very sick.  David said he was feeling a little off too, and then Joel said the same thing, and within a couple of hours, all three of my menfolk were sick.

Because I knew I would be tossing and turning for yet another night with the noisy sleep apnea mask, I opted to sleep on the couch so Carl could try to get a better night's rest while he was sick without me there to disturb him too.   Carl said it wasn't necessary for me to vacate the bedroom, but I knew he would be more comfortable.  I put sheets and blankets on the couch, relocated my sleep apnea machine to a table in the living room and settled in for the second night with my new, noisy mask.

Now I have to backtrack a little bit; though both of our sons live at home, only Joel had seen me in my apnea get up when he took me to see the technician earlier in the week.    Until last night.  Since I was sleeping on the couch, and both of them were ill, they both had to traipse (or hustle) past the couch most of last night. I finally fell asleep with my face facing the back of the couch until around 3AM when David stopped to ask me a question.  The only source of light in the room was coming from the upstairs hallway so the couch was bathed in an eerie glow.  When Dave woke me up, I replied groggily while still wearing my sleep apnea mask.  If you have never heard a person try to talk through pressurized air pumped into a full face mask, you won't know what I'm talking about, but it's weird, to say the least.

 I am badly near-sighted and need my glasses, so I couldn't see his face, which is probably a good thing.  Poor Dave, he's already sick and must have thought he was hallucinating when his maternal apparition rolled over and faced him wearing a face mask out of Star Wars and asked in a muffled, airy voice, "David, what is the matter?" 

He stopped and stared a bit, though he recovered his composure quickly--gotta give him credit for that; poor kid.  What a shock it must have been.  Good thing he wasn't a little tyke, can you imagine the nightmares the sight of me in that thing would gave given a toddler??

Friday morning, my intrepid Carl was feeling much better and was out the door for work by 5:30 AM like always.  For him, the stomach upset was very short-lived, so who knows what it was; both of our sons are feeling a little better now that 24 hours is past, but both of them called in sick for work.

After another leaky night with the faulty face mask, I went back to see the technician again Friday afternoon and this time, he pulled out all the stops.  He brought five different masks into the room for me to try and hooked up each one to my machine so we could see how it fits under pressure.  I am now the owner of a variety of different  masks to try, which should be very helpful.  The main reason people fail to use their CPAP machines is because the face masks are so uncomfortable.  I'm supposed to try them all and see what works best for me.  I so appreciate the technician,  he's been so helpful.

Carl still says the bag over the head thing would be a good idea, and I think he's on to something there.  Maybe we will invent something that will be more comfortable, or at least some type of device that doesn't make the patient look like Darth Vader.

  We Sleep Apnea Patients have enough problems, we don't need to terrify our family members, too!


Darla said...

I often wondered how well those masks actually fit. Glad your men folk only had a 24 hour bug. I bet you did look like a sight in the middle of the night...!

FlowerLady said...

Oh dear Karen ~ It would be wonderful if Carl could invent something nice and comfortable for you to wear instead of what you are dealing with now. This all sounds like a nightmare.

Glad to hear your menfolk are feeling better.

Love and hugs to you ~ FlowerLady

Anonymous said...

This has been such an ordeal. And to complicate it, your menfolk fell ill. I hope you get a mask you can sleep with or maybe Carl can build you a new one. He is mighty handy and a good inventor. I loved his unique water feature, so I bet he can design one for you like they use in deep sea diving.And a special pillow to seat the 'helmet'.

Gatsbys Gardens said...

Hi Karen,

I have a friend whose husband goes through this. He gives up at times and doesn't use it. I hope they are working on some better device than this.


xoxoxo said...

Aw Karen---Glad you still have your sense of humor! You should try an invent one on paper if even only for funs sake... it could happen!

Alison said...

Sorry to hear you are still not comfortable, but I hope you keep trying. There has to be a better way!

Poor menfolk!

Missy said...

I agree with the others. You and Carl are both such creative people. Why don't you look up on the net what is available and from your experience tell the companies what need to be changed to make the masks more user friendly.
Sounds like they need better sealing for a start.

Pam's English Garden said...

Dear Karen, Been through all this with my husband, so I really feel for you and your family! I wish you a happier, healthier 2011. P x

Shirley said...

Karen, sorry to hear you are still having problems with your machine. I hope one of those masks does the trick for you and you will finally get the sleep you need. Keep your sense of humour, it makes it all seem a bit brighter.

Shirley said...

Karen, sorry to hear you are still having problems with your machine. I hope one of those masks does the trick for you and you will finally get the sleep you need. Keep your sense of humour, it makes it all seem a bit brighter.

Sandy said...

oh you poor thing.. what your going through with that face mask.. ask the doctor or the tech if they have the small nose clip one.. I use that one now and it's so much more comfee.. I learned to keep my mouth shut at night (duct tape will do
As for the kids, well they are getting a lesson in life.. and what we go through as we age.
I finally moved out of the bedroom and have my own (I love it) it's so much easier to sleep on my own and can make all the noise I need to without bothering the hubby. My new room is decorated my way and I also have my sewing set up in there and I love it.. first room of my own in my entire life (shared with sister before marriage).
Good luck with that Cpap.. it's tricky but you will do it in time!