Grieving the fact that my body fails to adequately breathe

[Mary Z]

I was in bed last night just feeling/listening to my Bilevel machine and it occurred to me how very scary this all is- needing 'PAP. My body has lost it's dependability in breathing for me at night. How could I have evolved to a place where my very breathing fails me during sleep? I have failed all modes of 'PAP and am preparing to get an ASV machine.

Essentially I just don't have good breathing during the night and thus good sleep. Good sleep is so important to our health and sense of well being. I have always advised newcomers that sleep apnea is a chronic disease that substantially impacts our lives and that we go through all the stages of grief in learning to deal with this fact. I find myself back at nearly the beginning of this process as I realize I need the ASV machine, scared and grieving the failure of one of my most basic bodily functions during the night. My AHI last night was over 40 with an AI over 30 on Bilevel at my prescriptionj of 4/8. I stopped breathing over 30 times an hour during the night. No wonder I'm depressed and suffer a lack of energy and a sense of well being. My hope now is that the ASV process (doc calling in prescription, insurance authorization, DME coming to the house to set me up) is swift.

Any encouragement, empathy, hang in there's are needed and welcome right now. I am having a moment that has lasted for years.

[BlackSpinner]

{{{{Hugs}}}}
We all age. Life happens. Some of us end up in wheelchairs and some on ASV. We all experience that betrayal of aging.
However when you add the lack of sleep it becomes overwhelming.

Good luck on the ASV.

[OCNorsk]

We all have our ups and downs. And revisiting a past grief is not unusual. Allow yourself some "poor me" time, but don't just marinate in it. I had been struggling with my CPAP for years. Got nowhere, was still sleeping crummy, couldn't find a mask that worked for me and felt lucky that my apnea is not really severe. I finally got a new mask and I at last have one that works pretty well for me. Not saying I sleep through the night. I wonder what that feels like. I feel gypped because I'm not overweight, I've always exercised and why do I have apnea? I have friends that are huge and they sleep like rocks.
I couldn't even get a diagnosis for about five years after I knew I had sleep apnea. There are many things that happen to us in life, I am just really glad that I have my little machine to keep me going.

PS... I'm not sure what my new mask is, I'll have to look it up, it's not the nasal pillows.

[Madalot]

Mary --

I could have written that post myself so I understand what you are feeling. Totally.

I was telling my husband the other day that despite my ups and downs, we have to remember that my body IS betraying me and without the machine, I'm not sure I'd still be alive. I don't like it any better than you do, but the alternative isn't very pretty either.

I will hold good thoughts that the ASV does the trick for you and you will soon be on your way to feeling better.

We're all here for you and will help you in any way we can.

Hang in there.

[RationalEntropy]

I remember how surprising it was for me when I found something was going ary. When in my undergrad years I felt my focus waning, and fatigue setting in when I was at my maximum bodyweight (to date). I dropped the weight, and much of it went away, but not all of it. I still had a mental fog that persisted. I was given nuvigil for a while, and realized that the only way it would have such profound effects was if I was sleep deprived. The only way that could happen would be if I had apnea, given that I was sleeping 8-9 hours per night. The sleep study said all. Lots of trials and errors, failure to tolerate CPAP, and bipap... now I have an ASV. Mind you these trials and errors cannot compare to some of the forum goers, but yeah, they can be inconvenient.

I did find it odd that, in my twenties, as a grad student, who exercises regularly had sleep apnea. When I explain it to people I am reminded to the lyric from "One" by Metallica, "tied to machines to make me breathe ...". It does sometimes bother me, but I'm pleased that I have obtained proper treatment.

I may not have the same experience, perspective or knowledge base that some people here do, but I do have a similar drive to learn and help. IT took me 3.5 weeks to obtain the ASV from call in, insurance approval, and ordering (I've heard varying accounts of time to obtain ASV). Within a few days of use I noticed improvements. Within a couple of months of use, I noticed that my mental functioning (memory, logic, verbal, etc) is returning pretty quickly, as was my drive to do anything other than lay around, or follow strictly imposed routines. Also, my affect balanced very well, and I no longer required nuvigil within a month or so.

I suppose, in short, what I am attempting to say is that it is likely that you have much to look forward to. You just must continue to fight for it and be patient. It is the only way to be sure. Sometimes minor, gradual, very informed tweaks to the setup may have to be made (an ASV has many "moving parts", so a bit of reading, and looking over data IS a must).

[chunkyfrog]

"He put a thorn in my side to remind me of His power". . .
Then He created people with imagination to BUILD these brilliant devices--for which I REJOICE!

[wildman 2]

Mary Z
I am just beginning my journey with CPAP, so I don't have any great wisdom to pass on to you. The one thing that I can offer is prayer. I will keep you in my prayers that you find the physical and mental strength to move forward and accept the thorn which has been given to you. I feel that the hardships we face in this life usually make us better people, and keep us closer to our Lord.
Know His Peace,
Wildman 2

[Kody]

Mary, I do sympathize with your feelings about our body's not functioning properly anymore in regards to breathing while sleeping. It's seems like this should be such a basic function, and should remain as such until our time here is gone. However for some of us, for what ever reason that's just not the case. Obviously no one likes to have to deal with any of this, however we do have to deal with the cards dealt us. I also had to go to an ASV machine, but I guess I'm lucky in a way they had such a machine that could help me. It's not been perfect by any means, and am still having some difficulties but on the other hand it's been a life changer in my case.

I hope it will help you as well, in feeling better and improve your life as much as possible. Keep the faith, and let us know how your doing, good luck.

[Mary Z]

Thanks to all. You have lifted my spirits.

[BlackSpinner]

Thanks to all. You have lifted my spirits.

and this is why I keep coming back to this forum!

Thank you Mary for giving us a "Feel good" fix.