Emotional impact of OSA and CPAP

[jskinner]

Well I've been on CPAP treatment about 6 weeks now. It has improved my life quite a bit although there is still a ways to go. This board has been very helpful in me getting a better machine, reducing leaks, etc, etc

When I first started treatment I was just so relieved to have finally found the solution to what was wrong with me. I had been wondering around in a daze for months (years). Now that I am thinking clearer I'm a bit bummed out about the fact that I am going to now have to live with this machine the rest of my life. I hate the thought that I'm always going to be tied to it. It limits one life in a way and just makes everything more complicated.

How does everyone deal with this emotional impact of the realities of this condition? Do other people feel this way sometimes. Does it go away with time?

[wolftracker]

been on apap since may

i have the thoughts some times ... and dont think about it
at other times ...

until something better comes along ... i guess we live with it



what else can we do

surgery ... at this time is not going to happen

[ailsaek]

When I first started treatment I was just so relieved to have finally found the solution to what was wrong with me. I had been wondering around in a daze for months (years). Now that I am thinking clearer I'm a bit bummed out about the fact that I am going to now have to live with this machine the rest of my life. I hate the thought that I'm always going to be tied to it. It limits one life in a way and just makes everything more complicated.

How does everyone deal with this emotional impact of the realities of this condition? Do other people feel this way sometimes. Does it go away with time?

Pardon my presumption, cos I'm even newer at this than you are. I've had mine a week and a half, and I'm still at the stage of dancing & singing about the house just because I have the energy to do so. That being said, I've aleady taken the thing camping (cabin, not tent, thank goodness, but unheated, so I had to turn off the humidifier) and have dealt with one power outage, so I've noticed that having my health and wellbeing depend on the power grid is a bit of a logistical challenge. My major worry, though, isn't the machine part of it, it's the power grid.

For me, the major emotional impact is just the feeling that I am really truly getting old. I'm 42, which isn't seriously old, but it is middle-aged, and I haven't taken anything like decent care of myself over the years, and now things are breaking down. It's scary. As a teenager/young twenty-something, I was immortal. Now I'm not. I always liked the idea of getting older. Turning 30, 35, 40, didn't get me down. But I didn't count on my body breaking down.

And all the while I am being surprised and unnerved by all this, I am also wryly amused. I've seen other people get older and their bodies work less well. Did I think I was immune? Well, yes, I'm me and they're not. In the back of my head, I'm still 27, and I still look just like my college graduation picture.

So, yeah, other people have emotional issues on this too, even ones who think they're totally happy about it.

[Nitro Dan]

I have been on CPAP for over 20 years now, it just becomes a way of life. I have not had to give up anything. Don't be discouraged, as time goes by, you won't even think about it anymore.

[DreamStalker]

Well I've been on CPAP treatment about 6 weeks now. It has improved my life quite a bit although there is still a ways to go. This board has been very helpful in me getting a better machine, reducing leaks, etc, etc

When I first started treatment I was just so relieved to have finally found the solution to what was wrong with me. I had been wondering around in a daze for months (years). Now that I am thinking clearer I'm a bit bummed out about the fact that I am going to now have to live with this machine the rest of my life. I hate the thought that I'm always going to be tied to it. It limits one life in a way and just makes everything more complicated.

How does everyone deal with this emotional impact of the realities of this condition? Do other people feel this way sometimes. Does it go away with time?

I don't know how severe your untreated OSA was ... but all it took for me was one day of withdrawl symptoms from not using it one night before to both shock and comfort me into knowing that I would be a hosehead for the rest of my life.

Right now I am still in a state of obsession over getting to the top of the PAP treatment learning curve. I suspect that in another few months I will have calmed down and continue my life as before only with more time and energy to do more.

- roberto

[OwlCreekObserver]

I've been at this for a little over three months now and I'm finally starting to get used to the idea that this xpap stuff is probably "forever." It isn't always pleasant -- hardly ever, actually -- but at least I don't wake up gasping for air nor do I keep my wife awake listening to my snoring and...not...breathing.

I think back to the many things that I used to do that I no longer do, and the mental adjustment that went along with those changes. I quit smoking decades ago and it took a while to accept the fact that this was a "forever" thing that I simply had to do. My hard partying as a young man also went by the wayside when the physical penalty that had to be paid the next day began to far outweigh whatever enjoyment I had, or thought I had anyway.

So that's sort of how I am adjusting to this cpap thing. It would be easy to dwell on the negatives, but if I just step back and look at the big picture, it's not that big a deal. Besides, I have several friends who are also sucking wind every night, so I don't feel all that isolated. Tapping into this group is also a big help.

Hang in there.

OCO

[ehusen]

Ehhh, I don't know. Other than it being an annoyance I don't really have any emotional issues with it. It can be really bothersome at times with: aerophagia, leaks, taping, nose irritation, rainout, etc. Honestly, sometimes I wonder if I'm getting better sleep or not what with all the CPAP irritants.

Buuut, it comes back to health. I think I'm healthier now. A lot of other symptoms I had seem to have gone away. Soo, I "think" I'm getting better with CPAP and I don't snore to wake the dead anymore, which makes my wife very happy.

For me, there was no "wow, I feel so much better the next day" epiphany. But I feel over time that it has helped. Enough to warrant the problems with it. When you have high BP, acid reflux, and migraine headaches, you're willing to overcome a few difficulties.

Now it's just something I throw on at night and go to sleep. Well that is ... hook up machine, start humidifier heating, plug in heated Aussie tube, wash face, put tape over mouth, lay down in bed, feed tube through bungie support system , attach mask to face, punch the "start" button on APAP machine, and go to sleep.

Like anything, it does become just routine with only minor hiccups after that. Do I wish there was a better way? Sure I do. But surgery just doesn't work (and make make things worse in some cases). The Pillar procedure might work but seems to be only for mild/moderate apnea cases (my untreated AHI was oh like 85).

So until something better comes along, xPAP is it. And I don't want to kick off in my sleep. I'm also in my early 40's and am experiencing the "uhhh, my body isn't immortal and I've got to take care of it better or die".

So I'm not a ringing endorsement for xPAP but if you look at what I do vs. what I say... (i.e. I use it all night, every night) I must believe in it.

Ehhh, what can I say? If you get it tweaked out just right with the proper mask, tube, machine, etc. it does just become second nature. Stick with it

[hornplayer]

I definitely went through a sort of Maslowesque 12-step process of accepting CPAP. Now that I'm through it, I've realized the following:
I don't have cancer
I didn't have stroke
I didn't lose any limbs
Nobody died
There are far worse things in the world than having to be on CPAP every night.

[Nitro Dan]

[quote="hornplayer"]I definitely went through a sort of Maslowesque 12-step process of accepting CPAP. Now that I'm through it, I've realized the following:
I don't have cancer
I didn't have stroke
I didn't lose any limbs
Nobody died
There are far worse things in the world than having to be on CPAP every night.

_________________

Here Here!!

[TXKajun]

19 months on CPAP now and looking forward to another 25 years on it!! CPAP has literally given me back my life, my wife, my son and my job! I wouldn't even THINK of complaining about it because of all the benefits I've experienced. Yeah, I really CAN do this another 25 years.

Sleep well, ya'll!
Kajun

This therapy WORKS!!!After all, what's the alternative? NOT doing it another 2-5 years and being dead?

[Wulfman]

How does everyone deal with this emotional impact of the realities of this condition?

Answer: In a POSITIVE manner.

It's "mind over matter"......if you don't mind, it don't matter.

The morning after my first night, I said to myself: "One night down, the rest of my life to go." And, I haven't looked back. I really don't think about it anymore.....it's just part of my nightly routine.

Don't let it get you down.....there are too many "positives" to this therapy.

Den

[Bookbear]

It may help to make a conscious effort to remind yourself of the very real health benefits cpap therapy provides. Its also a good idea to remember that it DOES take time to get used to a cpap, and that some adjustments (minimal) will have to be made in your daily routine. Make an effort to focus on the positive outcomes of cpap therapy, and don't hesitate to visit here often (to post, or just to read of other's experiences). And don't give up on yourself or on the therapy!

_________________

CPAPopedia Keywords Contained In This Post (Click For Definition): CPAP

[whatrdreamsmadeof]

i used to feel down about being "tied to this machine", then i remember the 50's and people in iron lungs to stay breathing..........what's that story about the man without legs??????????????? think positive and be grateful, for the help from this forum

[lvehko]

I think it's important to note that having emotional issues around having to use a CPAP machine is not the same as "being negative" or having a bad attitude. Yes of course we all eventually get used to everything -- but the question of how it initially impacts us emotionally is an interesting one.

For me, learning I had sleep apnea was a real blow. I have always struggled with my weight, and while I'm not morbidly obese, I *am* about 25 pounds overweight. I have *always* been about 25 pounds overweight, despite having been on every freaking diet and/or exercise program known to man. Before I found out about the apnea, I thought I had made my peace with it, but those old feelings of depression and hating my appearance came back with a vengeance.

I also had to face the reality that snuggling up to my husband and falling asleep like in the movies was a thing of the past. Yes, I know there are worse things, but for some of us, the small things are the hardest. I haven't been one of the lucky ones who woke up on day 2 of CPAP treatment dancing and singing -- I'm on day 84 of treatment and still struggle with feeling tired sometimes -- so there are times when I lie there and wonder if it's worth it. Don't get me wrong, I definitely feel better, and I'm glad to know that my risk of a lot of other health conditions has been reduced by using CPAP, but there are days I feel like I'm killing a flea with a howitzer, if you get my drift.

For me, education has been a real help. I learned that only about 60% of people with apnea are overweight, and that being overweight doesn't GIVE you apnea, but it will make it worse if you have it. There are probably a lot of normal-weight people out there with apnea who haven't been screened for it because they have the same stereotype in their head that I did -- that only fat people get apnea.

I still haven't solved the spouse issue, but I'm fortunate to be married to a guy who doesn't seem to care what I look like most of the time, so getting into bed with a cyborg doesn't bother him.

But I still fight with the whole mortality issue -- I may still think like a 14 year old, but I'm never going to be young again, and that's not that easy to accept. That's why old people get cranky.

Min

[birdshell]

(snip)

For me, there was no "wow, I feel so much better the next day" epiphany. But I feel over time that it has helped. Enough to warrant the problems with it. When you have high BP, acid reflux, and migraine headaches, you're willing to overcome a few difficulties.

Now it's just something I throw on at night and go to sleep. Well that is ... hook up machine, start humidifier heating, plug in heated Aussie tube, wash face, put tape over mouth, lay down in bed, feed tube through bungie support system , attach mask to face, punch the "start" button on APAP machine, and go to sleep.

(snip)

I, too, had no epiphany. I call it a "subtle but significant change" that slowly improves.

It does seem that one should not have to work so hard just to sleep. There surely is a way to simplify and improve the CPAP design. I realize that there must be many considerations, but still feel that one should be able to care for the equipment so much more easily. The machine and its necessary accoutrements should be able to be MUCH more compactly packed away, too.

However, the fact that I am doing better is a miracle for me. Thanks to the help and fixes from this forum, the ComfortLite 2 and the care for the equipment are as easy as I can make them. The CPAP has not been the total answer, but it is the icing on the cake for me!