For the last 2 weeks I have slept with a breathing machine strapped to my face as part of the sleep study / respiratory therapy I'm involved in to try to sort out my sleep disorder. The breathing machine is a full-face mask that straps around my forehead and neck and has a long tube coming out the front that connects to a pump. Air is continuously pumped through my nose to prevent my upper-respiratory system from collapsing (the theory being that the structure of my upper-respiratory system collapses, I stop breathing, my blood loses oxygen, I have a seizure, I wake up, I start breathing again.)
For the last 2 weeks I have strapped myself in at bedtime and tried to lay as still as possible to not disturb the mask (if the mask shifts the seal breaks and the pressure drops, so the pump thinks that I've stopped breathing and starts pumping harder which increases the pressure in the mask and I feel like my face is going to explode. It is not pleasant.) I cannot roll over for a snuggle with my husband. Random midnight kisses are no longer a possibility. I lie as still as possible because I'm scared that if I move, I'll break the machine (it costs $3,000 and my insurance won't even look at my claim until I'm actually diagnosed so the machine is on loan to me to see if it helps me sleep better - ha!) Bedtime has become very clinical and very stressful (and frustrating as I've used the machine every night for the last two weeks and have still had two seizures, THANKS BREATHING MACHINE! YOU'VE BEEN VERY HELPFUL!)
So I'm not surprised that I've been sad and blue is what I'm saying. My unshakable funk is understandable. The good thing is that I'm halfway finished with my 30-day test. In two weeks I will be done and I will (hopefully) be able to return the (unbroken - fingers crossed!) breathing machine and life will return to normal. If my normal includes seizures when I sleep, well that's just something I will have to accept. Two weeks cannot come soon enough (just ask Shawn - poor guy has been sleeping next to Darth Vader for the last two weeks.)
Subscribe to:
Post Comments (Atom)
Ugh. Boo for science. I vote that they come up with something more comfortable STAT. That apparatus just sounds ridiculous. I hope you guys will find something that works out.
ReplyDeleteIt's one thing if it's really helping you sleep. Then I'd say that you have to re-evaluate whether sleep is more important than snuggling before bed. That said, if the apparatus doesn't appear to be helping with your sleep, then the answer is simple: chuck it.
ReplyDeleteI'm with Nilsa - if it's not helping and is actually causing more stress than help, get rid of it - at least you'll have tried. I'm sorry about all of this - I really hope you can get diagnosed and properly sorted soon <3
ReplyDeleteOh lovey, that's hard. And then the stress of "what if I break it?" - super stressy! You won't, though, you just won't. That is a long trial period. You Canadians are thorough!
ReplyDeleteDamn! And I thought my mouth guard was bad to sleep in. I think you win this competition.
ReplyDeleteUgh. So sorry you have to try to sleep like that. (But the Darth Vader reference made me laugh.)
ReplyDeleteugh that just does not sound fun, but you're halfway there. you can do it! weee! wooo! :)
ReplyDeleteThat thing doesn't sound comfy at all :S I had enough trouble with the sleep apnea thing on my FINGER, let alone something over my face! I hope they figure this shizz out soon for you muffin!
ReplyDeleteThat sounds all sorts of awful. I hope it helps you figure out what can be done.
ReplyDeleteOh man, that is so awful! I really hope this ends up helping you in the long run, even though right now it doesn't sound that way. Thanks for sharing with all of us, though! I hope all these comments cheer you up a bit. Thinking of you!
ReplyDeleteOh sweetie, that's so hard! I really hope that their theory about your respiratory system is wrong and there's a simpler, less sci-fi fix that will work better for you. I wish I knew if the seizures hurt you to have them, or if they were just woke you up, or if they're trying to intervene because they can hurt you in the long run.
ReplyDeleteEither way, this sounds fucking brutal, and I think you're amazing and strong, and I'm so so sorry because you shouldn't have to be amazing and strong with no warning in the middle of the night. Your funk is totally understandable and I hope you're giving yourself free access to marshmallows and ice cream at all times <3
Sounds like a CPAP machine. Have you told your doc that you're still having seizures? Might make them decide you can stop, since it doesn't seem to be sleep apnea that is causing your issue. I sure hope you can figure things out - this sounds like no fun!
ReplyDeleteand here i thought wearing glasses for 2 weeks before my lasik consultation was bad ;-)
ReplyDeleteooooof. halfway there. halfway there! i sure hope that it's doing some other sort of monitoring, so that when they get the data from 30 days it helps them figure out what IS wrong, since this collapsing-respiratory-system theory seems to be not it. :-\
Do you ever look over at Shawn when you are wearing it and go, "Luke, I am your father."? Because that would be funny.
ReplyDeleteGood god woman, they do have you hooked up like Darth Vader! I hope they figure out what the issue is and resolve ASAP. Like you said, only two weeks left, not much longer at all. You can do this!
ReplyDeleteDC? October?! What? Tell me more! OX!!!!!!!!
ReplyDeleteP.S. I am truly hoping the sleep study will reveal some answers for you. I understand the frustration of not knowing. Love you, lady.
Oh my lord, woman. BIGGEST BEAR HUG EVER.
ReplyDelete