Especially for newly diagnosed - Dealing with Change

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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idamtnboy
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Re: Especially for newly diagnosed - Dealing with Change

Post by idamtnboy » Sat Dec 07, 2013 10:49 pm

sleepy1235 wrote:Oh please!

Having sleep apnea is not a fatal diagnosis. The whole "shock, denial, depression, and acceptance" are the stages of dealing with a fatal diagnosis. My mother died of breast cancer, I know.

This is what happens with an apena diagnosis.

1. You find out that there is a root cause for why you are sleepy. It isn't because you are older. You are relieved.

2. You find out that there is a treatment and it is effective. You are overjoyed.

3. You use the CPAP machine and it works and you are resurrected and can get around doing stuff again. You are further happy.

4. You regret that you didn't find out years earlier.

Some people just like drama.

P.S. If I do get a fatal diagnosis I don't plan on acting out some drama of stoicism to be applauded by others. I am going cursing into the night, even if I live to be a 100.
Your reaction affirms the notion that people experience all sorts of reactions, some negative, some quite positive like yours. For some people sleep apnea is a fatal diagnosis. Not fatal in the sense of being sentenced to a physical death, but fatal to a previous comfortable life style with no mechanical interferences with sleep time and other bedroom activities. I can tell you from personal experience the four phases are not limited to dealing with death. They are quite commonly experienced when one encounters any kind of significant change in one's life, both negative and positive. Your reaction to your OSA diagnosis is not uncommon, but it is not universal. The grief of losing a comfortable lifestyle also is not uncommon, but it also is not universal.

This is not a situation where one size fits all, but it does fit a lot of folks.

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John in Calgary
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Re: Especially for newly diagnosed - Dealing with Change

Post by John in Calgary » Fri Jan 10, 2014 12:22 pm

Thanks for sharing.

parksje
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Re: Especially for newly diagnosed - Dealing with Change

Post by parksje » Mon Jan 27, 2014 3:29 pm

IrishSpike67 wrote:Okay, I'm trying to be supportive here but "...anger, denial, depression"? Because you have Sleep Apnea? Really? Holy cow, folks. It's better to know what it is, finally, and get the necessary equipment so you can get it under control. I've read comments on other forums about spouses being "heartsick" about having to use a cpap in bed and how it completely wrecked someone's romantic life. Are you kidding me? WTF?
I gotta agree with IrishSpike here. I didn't go through any denial, shock, depression, or anger. We're not talking about a terminal illness. We're talking about something that can mostly be fixed pretty much painlessly. Sure, there's an adjustment, but c'mon, it's not chemotherapy.

My love life is actually better because I don't fall asleep before she's ready, and my wife's sleeping better because my machine is much more quiet than my snoring, so she's in a better mood all day. I haven't tried any crazy role play with my mask on, but it does kind of make me look like Hannibal Lecter, so I guess if someone was into that, or maybe wanted to pretend to be Darth Vader, it might even be exciting. Otherwise, who's getting it on while wearing their sleeping gear???

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idamtnboy
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Re: Especially for newly diagnosed - Dealing with Change

Post by idamtnboy » Mon Jan 27, 2014 4:14 pm

parksje wrote:I gotta agree with IrishSpike here. I didn't go through any denial, shock, depression, or anger. We're not talking about a terminal illness. We're talking about something that can mostly be fixed pretty much painlessly. Sure, there's an adjustment, but c'mon, it's not chemotherapy.
People have a whole range of responses. For you and IrishSpike, and others who have commented, it's great that you didn't experience denial, shock, depression, or anger. But as I responded to IrishSpike, many people do. I experienced those phases years ago when I lost a job and when I lost a carpool partner. It may not make sense to you, but for me it was real, although nowhere near as intense as when I lost my mother. Sometimes it can be a tremendous challenge for one person to understand the reaction another person has to a particular situation when your reaction was totally different. It's nigh impossible to get into the other person's mind to sort out why they respond as they do. All I ask is that you be willing to accept the idea that another person's reaction is real and valid for them, even if their reaction is totally bewildering to you. We are all different.

I will review the document though to see if I need to make it more clear that some people don't react with denial, shock, depression, or anger, but rather react with great relief as you have.

I welcome any suggestions for revisions from others. Please PM them to me to avoid loading down this topic. Thanks.

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basementclev2
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Re: Dealing with Change

Post by basementclev2 » Tue Apr 01, 2014 10:56 am

idamtnboy wrote:In response to the comments re: bargaining I've added some words recognizing that concept.

Coping with Change for CPAP Patients


beautifull thanks for sharing

Lacy Dcee

Re: Especially for newly diagnosed - Dealing with Change

Post by Lacy Dcee » Wed Apr 16, 2014 12:48 pm

I must say I totally agree with Irishspike. Please, if a diagnosis of Apnea is affecting your psyche so profoundly that you are experiencing anything close to the grief process find a counselor. If the diagnosis is affecting your relationship with your significant other try sex therapy, couples therapy or a combination of the two. I get it. Apnea is not fun. It is not easy finding the right combination of machine, mask, surgery, oral appliance or whatever it takes to get you sleeping and breathing through the night but that being said it is TREATABLE!!!It is not like losing a limb or being diagnosed with some sort of degenerative or terminal illness. It is somewhat life changing, but for me those changes are for the better. I get to sleep with my boyfriend. We have not slept together for a LONG time....I don't care if I have to wear a stupid mask that makes me sound like Darth Vader and causes me to look like a red nosed alcoholic. I GET TO SNUGGLE ALL NIGHT....and I get to sleep. I don't have to wake up with a banging headache. I have gone a full week without having to take a 3 - 4 hour, mid day nap . I no longer fear falling asleep while driving. I have actually had the energy to walk. All this may end up creating a situation where the degenerative disease I suffer from improves or at least doesn't get worse for a while. For me diagnosis was a god send. It took over a year to find the combination of mask and machine that enables me to sleep through the night but now that I have it, relief. Even when I was struggling to find a combination of things that would treat my apnea never NEVER did I feel like there was any issue with acceptance or any other one of the steps of "dealing with the change". My god people this should not be all that traumatic. It is not diabetes or parkinsons, or any other horrifying disease. It is a sleep issue that has some serious side effects but it is again treatable and once you find the right treatment it does apparently get better. Please try just try to understand I am not trying to be mean I am just saying in the grand scheme of things this is a minor annoyance.

This quote came to mind immediately upon finding this thread.
"My life has been full of terrible misfortunes most of which never happened."
Michel de Montaigne

Now I have to find what I came for origninally. Trying to figure out how to deal with the air swallowing thing so I don't wake up belching like I just won a chilli dog eating contest and washed it down with a six pack of beer.

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Ashlization85
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Re: Especially for newly diagnosed - Dealing with Change

Post by Ashlization85 » Sun May 25, 2014 9:00 pm

Hey there, first off I would like to say I'm so glad I found this forum! So here's my story. I was recently diagnosed with OSA and did a 7 day at home sleep study. within those 7 days I was actually very accepting to the changes and had a few good nights of sleep. I'm actually going to see my doctor Tuesday to talk more about prescribing a CPAP machine for me. I can honestly say it was a great relief knowing I could sleep in any position without chronically snoring and disturbing my partner. Now I miss the CPAP machine. I don't know the exact details of my study yet but I do know in one night I stopped breathing about 19 times every hour for 23 seconds and woke up without knowing 39 times.

As far as my reaction to my diagnosis? I look at it this way. I got answers to why I'm always tired! I'm so glad I caught this now and hey, being dependent on this machine isn't (to me) the worse thing in the world. I would much rather know I'm breathing. I believe everyone is entitled to their own feelings and perspective of things and every situation is different. I'm also dealing with hearing loss, my hearing over the years (I'm 29) has dropped from mild to severe - profound and I have no answers really to why other than its continuing to decrease. Music was my world and now I can barely make out classical music. How do I deal? I take a step back and remember that I'm breathing, I'm alive, I still have family and friends who love and support me, but most importantly I love myself and this doesn't effect who I am as a person. Everything happens for a reason and all we can do is work with what we got.

I bring up my hearing loss because it's the closest thing going I can relate to for the people who are depressed. But things do get better, we just got to take things one day at a time.

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RanaF
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Re: Especially for newly diagnosed - Dealing with Change

Post by RanaF » Sun May 25, 2014 9:53 pm

I am a new CPAP user using RESMED Tango machine. I am having issues keeping nasal pillow mask on for the entire duration of my sleep. So when I get up in the morning, I found my nasal pillow mask lying by the side of my bed and I have no clue as to when I take it off during the night. I have tried Swift FX and Air F10 masks and the issue is still the same. I have been using CPAP for almost a year now. Can someone suggest a remedy? Would really appreciate. Thx.
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Re: Especially for newly diagnosed - Dealing with Change

Post by RanaF » Sun May 25, 2014 9:54 pm

Sorry. The other mask is Airfit P10.
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Ashlization85
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Re: Especially for newly diagnosed - Dealing with Change

Post by Ashlization85 » Mon May 26, 2014 5:09 pm

RanaF wrote:I am a new CPAP user using RESMED Tango machine. I am having issues keeping nasal pillow mask on for the entire duration of my sleep. So when I get up in the morning, I found my nasal pillow mask lying by the side of my bed and I have no clue as to when I take it off during the night. I have tried Swift FX and Air F10 masks and the issue is still the same. I have been using CPAP for almost a year now. Can someone suggest a remedy? Would really appreciate. Thx.
Duct tape fixes everything?

On a serious note, maybe you need either the nasal mask or a new head strap. To me it sounds like the pillow mask isn't working for you.

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Re: Especially for newly diagnosed - Dealing with Change

Post by Darthlick » Mon Jun 02, 2014 11:39 am

New CPAP User The Story So Far...

Well here I am, a women, 53 years old 5ft 5inches and weigh 140 pounds, divorced for 14 years with a 21 year old son. Last Tuesday I was diagnosed with sleep apnoea and would need a cpap machine for the rest of my life, what a bomb shell, what a relief, what an absolute mix of emotions from complete horror, dread, the end of life as I knew it. Thoughts and emotions crowded into my head, I have always hoped that I would find a relationship but after this the chance of finding a relationship… can you imagine going out on that ever so important first date or may be the second and revealing that you have to be hooked up to a machine that makes you look like a cross between Darth Vadar and a Darlick but more importantly is the way that it makes me feel about myself… less than attractive,; the possibility of losing you licence which is in my contract, so I could lose my job, house, life… but on the other hand the machine will save me from major complications health wise and for the first time in living memory I would be able to sleep.. the turmoil going on… I keep telling myself that’s its early days…
Night One
Today I had the delight of picking up my CPAP machine, again with dread and elation. I went out for a curry with friends and had a relaxing evening, came home and set the machine up ready to wear… my normal routine is to get ready for bed, read for a while and then snuggle down to sleep. So thought I would put my mask on before reading, err can’t do that because I have a full face mask and I can’t wear my glasses, OK deep breath and stay calm, I’ll just read for a while and then put it on, so mask on and working, stay calm and lie down. As the hours ticked by and I tried to stay calm and breath, often I would nearly fall asleep only to jolt awake, or I was having vivid dreams about wearing the dam mask, at one point as I was drifting off I must have turned over and the pipe clanged against the bed (I have a cast Iron one), my mind instantly thought there was someone under the bed like in Luther, deep breath and stay calm , got up around 2am and had to have a cuppa , I know, I know, on the list of don’ts it said no drinking anything with caffeine in it but I needed some comfort… OK back to bed, deep breath and stay calm, mask back on and I did drift off until around 4am and continued to try hard to sleep but gave up around 5pm – here endith the first night.

Second Night

Well that was much better – went to sleep with only a couple false starts and must have slept from around 11:30 till around 3am and then off and on till around 5:30 and took a rest from the machine, so that’s an hour longer than last night, no great dramas, and I feel a lot better today than I did yesterday and more refreshed than I have been in a long while, if this keeps up all I will have to do is come to terms with the psychological effects and think what I’m going to do with all this energy.
That’s it so far… but thank you for your post, it has given me hope that things will get better but it will take time.

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Tatooed Lady
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Re: Especially for newly diagnosed - Dealing with Change

Post by Tatooed Lady » Thu Jul 17, 2014 7:49 am

Being forced to comply with a sleep study or face losing my job of 2 years, I wasn't exactly THRILLED. Then I couldn't get any feedback on my results, and upon talking to another driver who had been through the study at the same time, figured I'd dodged the bullet. Several weeks and attempts for verification later, I just cruised along, safe in the knowledge that sometimes no news IS good news.
Imagine my surprise when I heard that I'd failed the study and was required to get an APAP! Shocked? You bet. Denial? After a month of no news?? Sure! Angry? Grrrr, yes!!!! At the tender age of 29 +/- life as I knew it was OVER. Being as my habits and hobbies (eating and living under a roof) require income, however...I caved. I told my boss that I would whine, kick, cross my arms and make ugly faces, but I would give it a shot before offering to shove it somewhere on whatever idiot decided this torture was appropriate for ME. HARUMPH! This, of course, sent him into a flurry of explaining how IMPORTANT therapy is...he'd missed my offer to give it a try "for now".
So I had to push to get the equipment. I didn't want to sit and fear it...just jump in, get the kinks out of my system and GO! You'd THINK that when they say it's needed, everything would be put on hold a minute, and I'd get set up. Right. So a week or so later, I finally got to our terminal and met the DME. Nice woman. Well meaning. But NO clue about the idea of keeping the full face mask comfortably loose. Ouch. I picked the pillow mask. And because I lurked here, I knew more that night about comfortable fitting.
I fought with another woman at the DME. I had to repeatedly demand my prescription so I could buy what supplies I needed somewhere else. I had to move up to a larger nasal pillow...apparently the nice DME also wasn't "up" on proper fit. *sigh*
Was this hassle worth it? I feel like I've been prodded through flaming hoops, unsure of where I'm supposed to go, but the answer is YES. good thing, as all purchases since the unit have been paid out of my pocket so far. I'm testing masks to see what I like, and what I don't. Buying critical replacement parts, and splurging on a heated hose upgrade. No one to tell me I can't.
In the end, my health is in my own hands. To make the best of it, I'm doing what it takes to be comfortable. My change so far? Better sleep. Which means I'm a trucker who stays awake better through the miles. I'm not up as often at night to pee. Huge bonus for me. My sinuses aren't as swollen as they used to be, so I breathe better during daytime as well. And NO DRUGS. My inhaler makes me jumpy so I rarely use it. This has no bad side effects, so I'm super compliant, and then some. Sometimes, change is good.

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Re: Especially for newly diagnosed - Dealing with Change

Post by MarchWinds » Sun Aug 17, 2014 5:12 am

idamtnboy wrote:In response to the discussion in the thread about an unsupportive spouse I felt prompted to revise a write up I have concerning dealing with change. We encounter changes of all sorts through life, including the one when we received the diagnosis of sleep apnea. How we respond is almost always the same, albeit in different degrees and intensity. The emotional phases we go through are shock, denial, depression, and acceptance.

The information I share is derived from a work seminar on the subject and my own experiences of life. I trust it will be of benefit to some.

Coping with Change for CPAP Patients
Thank you so much for this post! I started with my APAP a month ago, and have found it more of a difficult journey than I expected. I am not sure how I am experiencing denial, because I was really grateful to finally have a diagnosis that explained a lot of symptoms I've been having. But I definitely do have anger. I see a therapist, and a couple of weeks ago I went to see her - I was sleeping well with my machine and starting to feel more stamina and vitality, but I felt depressed! We worked together and it became apparent that I was experiencing a great deal of anger - mainly at the medical profession for taking so long to even refer me to a sleep specialist. I have taken so many meds for depression and anxiety, not to mention restless legs, but never did anyone consider a sleep study. It turns out I have a subtle breathing problem - all events under 10 seconds - but still have an AHI of 30. It's been happening for years. My therapist has some figurines and stuffed animals in her office that people can use to represent their feelings and situations. She let me take home a dragon that I picked out - that dragon is my anger, and it is my ally as well. Great post - it's very helpful.

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spidey
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Re: Especially for newly diagnosed - Dealing with Change

Post by spidey » Wed Sep 17, 2014 11:21 am

I was diagnosed recently and just started the machine 5 days ago. Ive probably had this issue for 20 years now, diagnosed with everything from low thyroid for years to why I was always so tired. Falling asleep as soon as I wasnt engaged in anything. Having to stop on the highway if alone and have a cat nap. Fighting sleep so I could stay awake at a part so I could visit with my friends. And of course the genreal mood.

The last 6 months have were worse though, wife noticed a lot of changes with me. Lack of interest in things I used to enjoy, depression, moodiness, and I just felt generally like I was getting stupider every day. Stopped working out, you name it


Although I havent had a full night with the machine yet, I wake up after a fw hours and cant get back to sleep with the mask on, I am already feeling better. No more headaches when waking up and the dull pain behind my eyes are gone, I can actualy think better at work, and Im just seeing things differently. Even started walking at nights. I used to jog for years andf years, be heavy into fitness, but the last couple years, Ive just stopped

I hope soon I can sleep through the entire night with it on, but if I feel this good after only using 2-4 hours a night, I cant wait to see how I feel when I wear it the full 7-8 hours.

Even this week Im not hitting the snooze bar like 5-6 times becaue Im so freaking tired. I used to wake up and work out before work, so Im looking forward to that again, bt just physically couldnt get out of bed that early.

Am I changing my day time habits, I doubt it. I am trying to have more set bed times, but after years and years, its hard, but am getting better. Some people have set bedtimes 7 days a week, that I cant do. Fridays and Saturdyas I wont be going to bed at 10pm, just not the way my life works. Eating and alchohol consumption will stay the same.


Im looking forward to being the old me again, the last few years Ive just been so angry at just life really and just unhappy when I really shouldnt be. Great wife, good job, 3 great kids, what more can I ask for

scooter4x

Re: Especially for newly diagnosed - Dealing with Change

Post by scooter4x » Tue Oct 21, 2014 8:51 pm

New member here, looking for some advice and guidance. Maybe even some support down the road. 47 Year old Male from Omaha NE. Recently diagnosed with apneas after a home study that unexpectedly showed Central Apneas with no contributing factors. But the sleep study at the hospital was a straight to cpap at which time at 14 pressure I was at 0 apneas. So although it showed a problem it was all wrong on cause I guess. At any rate, been doing this for 10 days now. I have the following report and was curious if this was good? I have woke up nearly every night with extremely dry mouth and am fairly certain I unconsciously open my mouth. For the most part during the day I am a nose breather, but I must be opening mouth. Are the rates in the report concerning or what are your experienced opinions. Thanks for all your help!
Scott

Device Metrics
Date Apnea Hypopnea Index CPAP Device Data Median Leak (L/Min) Therapy Hours (Hrs)
Oct 10, 2014
0.80
Yes
0.00
6.13
Oct 11, 2014
0.30
Yes
0.00
5.78
Oct 12, 2014
0.40
Yes
7.20
7.25
Oct 13, 2014
0.10
Yes
2.40
6.88
Oct 14, 2014
0.10
Yes
12.00
5.80
Oct 15, 2014
0.10
Yes
3.60
6.87
Oct 16, 2014
0.30
Yes
4.80
6.23
Oct 17, 2014
0.00
Yes
4.80
6.83
Oct 18, 2014
0.10
Yes
2.40
6.25
Oct 19, 2014
0.30
Yes
6.00
6.20
Oct 20, 2014
0.00
Yes
9.60
6.08

Average
0.23
4.80
6.39