The subconscious mind seeks to foil this Newbie

[Laurie1041]

I put my mask on and was enjoying a good read before lights out. I was not sleepy at all and thought a bit of carbohydrates might help. It helped too much. I went back to bed without a second thought about hooking back up and woke up this morning to find a screen that said 0.0 hours.

I am in the process of finding acceptance with the fact that I have OSA. When diagnosed early October, I had an "Ah-Ha" moment - that maybe xPAP was the answer as to why I have been intermittently fatigued over the last 18 months. The "Ah-Ha" moment has passed and now I find myself slowly passing through the stages of grief. Grief over my perceptions that I am a very healthy young(ish) woman. Grief over the thought that there is no magical pill or other intervention that will make my OSA go away forever. There is no cure. I am sad when I acknowledge that this sleep disorder is chronic and that I will have to manage it for the rest of my life.

As an RN, I thoroughly understand that there are far worse disorders/disease states that I could be diagnosed with and I appreciate the magnitude of what may happen if I do not do everything within my power to control my OSA. This is not about not being willing to do what I need to do. This is my statement that my diagnosis of OSA has triggered some feelings for me - loss; loss of control, loss of the perception of youthfulness, loss of being an attractive single woman (with all gear on), and fear of the health consequences due to my non-compliance since 2002 (guilt).

I want to thank each and every one of you who has taken their time and energy to respond to any of my posts. There is a very warm spot in my heart for all of you. Tonight is another opportunity to practice a new way of life. Thank you for reading. Hugs, Laurie

[elena88]

Hi Laurie,

I know many of us had a bit of a transition to wrap this diagnosis and treatment around our brains..
I too was quite suprised that I was now a person who had a piece of "medical equipment" on my bed table, I was pretty mortified at first..
Last thing I ever expect to happen..

awhile back there was a thread about maintining dignity on cpap.... it brought out all sorts of answers, heartfelt feelings, and views I think you might
enjoy reading it...

although the title is about dignity, some other feelings do pop up, that I certainly could relate to..

I have to tell you there was a greiving periof for me when I got diagnosed.. I felt a loss of my "good health"... it took awhile to adust to that.


viewtopic.php?f=1&t=53986&st=0&sk=t&sd=a&hilit=dignity

[Emilia]

Hi Laurie.... I understand all you are feeling, but I want to put one thing into perspective: I am not 'youngish' anymore, but I wish I had been diagnosed at a much younger age so I would not have lost so many productive years due to fatigue that NOT ONE doctor could help me with..... until a cardiologist was smart enough to order an overnight oximetry test to see if I had a loss of O2. Those results led me to a sleep study and finally a dx of OSA. Had this happened 15 yrs ago or more, my life would have been quite different, of this I am sure. So.... I could grieve for what shoulda, coulda been....but it is all water under the bridge. I can only look forward to my remaining years and know I will be sleeping well and oxygenating my cells properly.

I know you know what you need to do, and I am sure you will do it.....you are far too intelligent to not do it. Don't think of it as a 'loss of control'....far from it! Now YOU ARE in control of your sleep, breathing, and health!!

Keep posting; keep asking questions; keep letting us know how you feel.

[ozij]

Tonight is another opportunity to practice a new way of life. Thank you for reading. Hugs, Laurie

Yes it a new way of life, isn't it? I never forget the moment when it dawned on me that I am going to have to use this machine for the rest of my life. That was before the machine became as helpful as it could, and the thought and the change loomed high, and pretty dark too (it was night). But then the change in the way you feel pours so much light into the picture -- it's a case where the loss of "healthy me" as a concept is really overcome by "oh, this is what healthy feels , not that...". Because you see, with the machine, you are breathing like a cured person - and many of the things that plagued your body because of the obtructed breathing do get really cured.

Good Luck, Laurie.

[Janknitz]

Laurie,

I'm glad that you recognize what you are going through for what it is. Many people don't and I think that's a factor in poor CPAP compliance as well. People feel sad and depressed as they move through the stages of acceptance of this serious diagnosis at the same time they are coping with treatment that is difficult to get used to for a large segment of CPAP users. So a lot of people just throw up their hands and quit, since they are not used to feeling bad, don't understand why they do, and are unwilling to do the work to get to the other side of it.

Even when you are pleased to finally have a diagnosis and look forward to the positive changes, the reality hits hard. So be kind to yourself, and keep on recognizing what's happening and venting as you need to. You're doing great so ar, and you will get to the other side where you can recognize the benefits and get on with your life.

BTW, Carbohydrates to get yourself sleepy are not alway the best idea because food in the stomach can turn into reflux from an event or aerophagia. Better to do things like a warm bath, a usual bedtime routine, etc.

I have to get in bed and get comfortable before I put my mask on since it takes me a good bit of fiddling and some shortness of breath from asthma/heart issues. I wait until my breathing calms down before I mask up and I'm fearful that one of these nights I'll fall asleep before I put the mask on. So I always hold the mask in my hand in a position where my hand is going to "fall" as my muscles relax--usually that will wake me enough to put the mask on.

[SleepyT]

...I am in the process of finding acceptance with the fact that I have OSA... now I find myself slowly passing through the stages of grief. Grief over my perceptions that I am a very healthy young(ish) woman. Grief over the thought that there is no magical pill or other intervention that will make my OSA go away forever. There is no cure. I am sad when I acknowledge that this sleep disorder is chronic and that I will have to manage it for the rest of my life...This is my statement that my diagnosis of OSA has triggered some feelings for me - loss; loss of control, loss of the perception of youthfulness, loss of being an attractive single woman (with all gear on), and fear of the health consequences due to my non-compliance since 2002 (guilt)...Laurie

Laurie....these points of yours that I picked out are dead on what I felt at the beginning. I completely relate to what you are saying. And while most folks don't want to linger too long in this place of grief and loss...it takes as long as it takes to work through it, don't you think? I believe you will come to terms with it as best as you can. It totally IS a loss and a change you didn't sign up for. The loss of control is infuriating. I understand your struggles. I do. In fits and starts you will deal with it. I wish you all the best as you proceed on your CPAP journey. Welcome to the forum!

[Laurie1041]

Tonight is another opportunity to practice a new way of life. Thank you for reading. Hugs, Laurie

Yes it a new way of life, isn't it? I never forget the moment when it dawned on me that I am going to have to use this machine for the rest of my life. That was before the machine became as helpful as it could, and the thought and the change loomed high, and pretty dark too (it was night). But then the change in the way you feel pours so much light into the picture -- it's a case where the loss of "healthy me" as a concept is really overcome by "oh, this is what healthy feels , not that...". Because you see, with the machine, you are breathing like a cured person - and many of the things that plagued your body because of the obtructed breathing do get really cured.

Good Luck, Laurie.

Hi ozij,

The perspective that you presented, "you are breathing like a cured person" really hit me in a very positive way! It changes my automatic negative thought, "Oh, this really sucks to have to wear this mask" to "Wearing my mask will allow me to breathe normally". I like it! That works for me. Thank you so very much! Laurie

[Laurie1041]

[quote="elena88"]Hi Laurie,

I know many of us had a bit of a transition to wrap this diagnosis and treatment around our brains..
I too was quite suprised that I was now a person who had a piece of "medical equipment" on my bed table, I was pretty mortified at first..
Last thing I ever expect to happen..

Hi Elena,

Thank you for your kind and helpful response. I will read the link you posted. You hit the nail on the head when you said ". . .transition to wrap this diagnosis and treatment around our brains". That's exactly where I am at. I had a lot of trepidation about posting my feelings because I thought that I would get a lot of, "Don't whine, just suck it up because your life depends on xPAP." Nothing could be further from the truth. Thank you so very much for your post. I feel so much better and definitely part of the community here! Hugs, Laurie

[BlackSpinner]

I had a lot of trepidation about posting my feelings because I thought that I would get a lot of, "Don't whine, just suck it up because your life depends on xPAP." Nothing could be further from the truth.

No No That is step 1 in order to get the mask on, you are far beyond that point.
Before I got diagnosed with OSA I went through about 15 years of "awesome" migraines, learning to do relaxation and pain control exercises - I would sabotage myself for all the reasons you listed in the first post. Learning to love my cpap machine and mask was much much easier then becoming one with the migraines and my limitations because of them. My cpap machine turns me from a nasty bitchy zombie into a functional human being. Just like my bra turns me from a saggy old lady into a sophisticated well build mature woman - and my mask is much more comfortable then my bra. I love them both.

[chunkyfrog]

I have never been 'normal'--I've been aware of it all my life.
First, I am under 5' tall. People have said I'm smarter than the average froggie--(some, the opposite).
I suppose I've been a bit of a brat most of my life--hopefully not TOO spoiled.
It was no surprise to me there was something wrong--I felt like crap.
Maybe in a generation there will be a cure--maybe sooner.
I'll take this rested, well feeling as long as I can get it, however I can get it.
It really is worth it.

[kirstena]

Hi Laurie -

Thanks for your honesty - it can be really hard to admit you're having a problem...especially with your subconscious!

I put my mask on and was enjoying a good read before lights out. I was not sleepy at all and thought a bit of carbohydrates might help. It helped too much. I went back to bed without a second thought about hooking back up and woke up this morning to find a screen that said 0.0 hours.

You know, after I had a bad concussion a few years ago, I started having short-term memory problems myself. These got MUCH worse when my OSA manifested - I actually thought I was getting early onset Alzheimer's (there *is* a higher risk after head injury, after all). I find myself doing all sorts of little tricks to remember to do stuff like put my mask back on. For instance, if you put it where you'll lie on it when you get back to bed, you'll be more likely to put it on when you pick it up to move it. I think if I was really tired, I'd go so far as to put the whole machine in the bed for a mnemonic!

I am in the process of finding acceptance with the fact that I have OSA. When diagnosed early October, I had an "Ah-Ha" moment - that maybe xPAP was the answer as to why I have been intermittently fatigued over the last 18 months. The "Ah-Ha" moment has passed and now I find myself slowly passing through the stages of grief. Grief over my perceptions that I am a very healthy young(ish) woman. Grief over the thought that there is no magical pill or other intervention that will make my OSA go away forever. There is no cure. I am sad when I acknowledge that this sleep disorder is chronic and that I will have to manage it for the rest of my life.

Yeah, coming to terms with one's mortality does kinda suck, doesn't it? But you're doing the necessary work to come to terms with it or you wouldn't have posted in the first place. Naturally as an RN, you know that it's much better to do the emotional work BEFORE you've had a stroke or heart attack. Of course, while I'm talking to you, I'm telling myself too. My weight is putting unnecessary strain on my heart and joints. Why is it easier for me to strap a hose to my face than it is to change my diet? Guess I'll have to think about that one some more.

As an RN, I thoroughly understand that there are far worse disorders/disease states that I could be diagnosed with and I appreciate the magnitude of what may happen if I do not do everything within my power to control my OSA. This is not about not being willing to do what I need to do. This is my statement that my diagnosis of OSA has triggered some feelings for me - loss; loss of control, loss of the perception of youthfulness, loss of being an attractive single woman (with all gear on), and fear of the health consequences due to my non-compliance since 2002 (guilt).

That's an awful lot of loss to grieve. As another "medical professional," (well okay, social worker,) I wonder if I can guess another part of the negative feelings. When I got out of grad school and became a counselor, I didn't want to think about ever needing counseling myself. It was a huge hurdle for me to get over being a "patient" instead of a "practitioner." But when my life situation became difficult enough, I bit the bullet and got the help I needed. Since then, though, I've found that that measure of humility the experience taught me has made me a better person and a better practitioner. I think that, in order to be effective in the helping professions, we have to develop a bit of a thick skin so that we don't identify too closely with our patients and become so emotionally involved with them that we can't do our jobs. When it's time to go join them in the waiting room, so to speak, it can be a tough adjustment. But worth it. Very much worth it, as it makes you (well, it made ME) much better able to help others in the future.

And just think - you only have to make this emotional transition once. It's like stage fright - no matter what may come, the first time is the hardest. By the time I got to OSA, I just shrugged and went looking for a CPAP machine. You can be that way with the (inevitable) next thing, may it be years and years in the future.

Best of luck!
Kirsten

[M.D.Hosehead]

loss of being an attractive single woman (with all gear on)

loss of control

loss of the perception of youthfulness

Laurie, I'd bet you are just as attractive a single woman today as you were in September before your diagnosis--except to very superficial men, and you're better off without those anyway.

As another poster has pointed out, you are more in control today than you were in September.

And you're only one month older.

Plus, you're smarter now.

Best wishes.

[Laurie1041]

loss of being an attractive single woman (with all gear on)

loss of control

loss of the perception of youthfulness

Laurie, I'd bet you are just as attractive a single woman today as you were in September before your diagnosis--except to very superficial men, and you're better off without those anyway.

As another poster has pointed out, you are more in control today than you were in September.

And you're only one month older.

Plus, you're smarter now.

Best wishes.

Dear M.D. Hosehead,

You have nicely reframed my fears and concerns in a very positive manner. Yes, I do have much more knowledge than a month ago. I am in control because I am an active participant in my healthcare. Lastly, the only thing that matters is that my kitties still sleep with me. They don't seem to be bothered in the least with my mask. Laurie

[Twentysix]

Could relate to your feelings and have even posted something similar somewhere (I tend to lose track because of the enormous amount of posts). You put it well, that idea of 'loss of youthfullness'. On the other hand, feeling much better and healthier will of course get the useful feeling back. My GP commented last week, after a month of APAP, that he thought I was looking much better and better rested. So I reckon we will start looking younger!
Must admit I'm not contemplating the 'rest of your life' thing yet. Too big at the moment. I still think I will lose weight and then get off it at some point.