Redefining Boundries with Spouse

SuperGeeky · Post by **SuperGeeky** » Mon Jul 21, 2008 10:13 am

Since being diagnosed with Moderate SOA about two 1/2 months ago and starting CPAP therapy, I've found it necessary to manage my relationships.

Specifically, my wife has not only continued to ask much from me but lately even more..

We sat down and talked about my illness. Though, I've explained the memory issues and joint pain I experience, she didn't understand that the cure can be worse than the illness.

We moved ourselves from a townhouse to a house while I was adjusting to BiPap. I was averaging less than five hours sleep per night while doing tremendous amount of physical work.

Under such conditions, Sleep Doc looked at data, numbers were excellent. But, I felt horrible.

I explained to her that before knowing I was sick, I would push myself hard to get things done. Knowing how sick I was/am, I'm being gentle on myself. Taking rest breaks, trying to get more sleep and watching my therapy very closely.

For over four years, I slept on our dining room floor, old futon mattress, no frame. I bought a new bed for myself though I sleep in the basement of our house. Sleep Doc wants a mold test done.

So I'm learning how to take care of myself. Physically and mentally. But boundries with my child and wife need to be redefined. I don't want a stroke or heart attack. I want a long life.

Has anyone else struggled with Spouse, Boss or others that are in denial of your illness and continue to push and in some cases push harder?

For some odd reason, those who I have told I'm sick, don't regard sleep apnea with much weight or seriousness. Does anyone feel disregarded, belittled or having no tolerance of memory issues?

Thanks everybody!!

SG

Guest · Post by **Guest** » Mon Jul 21, 2008 10:26 am

My boss made fun of me again this morning for not being completely "in his frame of mind" in the morning.

He is in continual denial of my illness. I am here, alert, and working. I'm NOT, however, a frickin' mind reader, and I don't understand why I'm interrupted from copying a report that needs to go in the mail ASAP to stare at his computer screen. When I ask why, he belittles me.

I've told some friends I have OSA, and they shrug and smirk and nudge each other and say "You must have a new boyfriend."

Yeah, it's the Rodney Dangerfield of health issues.

I'd say, if you've been sleeping on the floor for four years, it's time to contemplate trading in the old spouse on a new model. She sounds like a real b*tch to me. Are you paying the mortgage for her to live in style while you live in a mold-infested basement like a homeless person? WHY?

Sorry, not really HUMOROUS in the AM about people treating US like sh*t.

Good luck, buddy!!!
Babs

jjposey · Post by **jjposey** » Mon Jul 21, 2008 10:30 am

YES!!!! I have struggled with my spouse (and his mother) b/c of my osa! It has gotten better since I was diagnosed about a year and a half ago. My tact was basically to just ignore any snipes or "attacks" I received regarding osa. I tried arguing with them, educating them, etc. After a while they both just shut up about it.
Funny thing is they are both supportive of other people who have osa. I guess though that they don't NEED to be supportive of them and they are both accustomed to me carrying the load with them.
As far as the memory issues - I've gotten past thinking I was losing my mind and have basically accepted that I have very few solid memories before about 2 years ago. Lots of snippets, just don't remember what others do.
Good Luck. I hope it gets better VERY SOON! Just remember you can't take care of anyone else if you don't take care of yourself![/i]

JeffH · Post by **JeffH** » Mon Jul 21, 2008 2:55 pm

What Babette said....

Life's too short to put up with that kind of crap.

JeffH

kteague · Post by **kteague** » Mon Jul 21, 2008 8:31 pm

I don't know if anybody was any harder on me than I was on myself, but it did hurt to be misjudged and misunderstood. For years I kept pushing myself to maintain my performance level but could feel it slipping from my grasp. It was quite a fall from glory, from a shining star to a dim-watt bulb. The hardest was knowing my boss considered tardiness a character flaw, and he had no concept of how much character it took for me to even make it to work. By the end I went in every day crying, feeling as if I'd surely die if I did this one more day.

Once I crashed physically and mentally, I really couldn't care what anybody thought or expected of me, as I was in survival mode. I took to my bedroom and only came out for medical appointments - for months. I became very protective of my sleep, and allowed myself to sleep any time and as much as my body told me it needed. Since my multiple sleep disorders were not under control, I slept in snatches - around the clock - and with no apologies. I am glad to have had that luxury (to me a necessity), as I had no one living in the home expecting things of me.

SuperGeeky, since you threw this topic out there, I'd like to throw out some cautions. Being protective of your health is a good thing. Balancing that with the needs of others in your life has to be considered. Be careful to not allow your OSA to become an easy out. It would be a shame to get all healthy and be alone with no one to enjoy it with. This forum and data-watching can easily become an obsession. Set a reasonable time and stick to it. Any other time you could use doing something for or with your wife or child.

As far as you sleeping for years outside the bedroom, if that was because you snored horribly and she couldn't sleep and you didn't yet choose to do anything about it, then out of the room is where I think you should have been. What I don't understand is why you still need to be out of the bedroom now that your OSA is being treated.

OSA has taken a lot from you. Don't give it anything more than you have to. Best wishes at working this out amicably with your wife.

DreamStalker · Post by **DreamStalker** » Mon Jul 21, 2008 8:49 pm

Sounds like there may be other issues besides your OSA. Take care of yourself first. If she is not willing to wait around for you to get your life back under control ... she isn't worth crying over.

You health first, your relationship second!

ozij · Post by **ozij** » Mon Jul 21, 2008 9:45 pm

SuperGeeky wrote:We sat down and talked about my illness. Though, I've explained the memory issues and joint pain I experience, she didn't understand that the cure can be worse than the illness.

What?

You told your wife cpap therapy was a cure and it was worse than the illness?

Sleep apnea is a breathing disorder that happens when you sleep.
You need cpap therapy to help you breathe at night, it will never cure your breathing disorder.

kteague wrote:As far as you sleeping for years outside the bedroom, if that was because you snored horribly and she couldn't sleep and you didn't yet choose to do anything about it, then out of the room is where I think you should have been. What I don't understand is why you still need to be out of the bedroom now that your OSA is being treated.

OSA has taken a lot from you. Don't give it anything more than you have to. Best wishes at working this out amicably with your wife.

Exactly.

And if there are other issues, don't use OSA, or CPAP to evade them.

O.

desikitteh · Post by **desikitteh** » Mon Jul 21, 2008 10:29 pm

i have this sort of problem with my bio family with all my health problems.

cfids, fm, aspergers, sensory integration, meniere's, ptsd, gerd, mpd... you name it, i got it.

do they take any of it seriously? umm... nope.

graygables · Post by **graygables** » Tue Jul 22, 2008 12:05 am

I was raised by the Drama Queen of the Psychosomatic Ward, but NO ONE else was allowed to steal her illness thunder, so no one was ever "really sick". I had histoplasmosis in my lungs and spent years with pneumonia, but I was expected to "buck up" and "tough it out". Bipolar also runs in her side of the family, great-grandmother was committed after a suicide attempt, and my grandmother completed suicide, but still, the DQPW will have nothing of it, no, no one has problems. 9yo has recently started having panic attacks and I've been instructed to "spank her" and "lock her in her room. If she passes out, oh well, she'll wake up". Nice.

I guess, because of how I was raised, I never really thought of OSA as an "illness", but more of a "condition" that needed to be treated or my life expectancy could be dramatically shortened. I guess I also never thought about expecting to be treated like a sick person because when I was nearly dying as a child, I wasn't allowed to be an invalid and this is nothing like that. While I'm throwing my mask at 4am, I'm not convinced that the "cure is worse than the illness".

I'm fortunate that my family understands I have OSA and has not once made fun of my "elephant nose-hose". They have chipped in to try to help come up with solutions for the problems (9yo decided I needed "bling" on my hose cover...ummm, no). I have NOT been a DQ about it, just very matter-of-fact which is why it's been easier to bring them on board. I also am a "push through" kind of person and although I've been in a fog for years, I still have been able to somehow set the fatigue aside and still do the things I need to do (grad school, homeschool kids, run 2 businesses, Mom stuff). I've told hubby he'd better watch out, 'cause once my brain cells actually get some oxygen, I'm going to be SCARY smart and I'll be a PhD before he knows it...

I do think it sounds like a lot more than OSA at work. Boundaries are a good thing, but it's also a 2-way street. I think a meeting might be in order where you just listen to what your wife and child have to say (and be willing to hear their perspective).

I've been reading "As a Man Thinketh" by James Allen and it's really been an eye opener (and I've needed one lately...)

I hope you can get some rest and that your family can come to an understanding.

Gray

crossfit · Post by **crossfit** » Tue Jul 22, 2008 12:26 am

Well, I won't comment on your situation but I can share mine. I am newly diagnosed. Everyone I have told has been really great. One even said, "wow, you realize that if you were a prisoner of war that would count as torture?" I hadn't but sleep deprivation is used as torture. It helped to explain that I was being strangled by my own anatomy 61.4 times per hour every hour, every night.

The only one person who did not seem to care much was my husband. I adore my husband but compassion is not his strong suit. I had to sit him down and ask him how he would feel if his doctor told him he had cancer or aids or some type of major illness that could not be cured. Then when he realized the impact of this, I had to explain just the many levels of how OSA has been effecting me all these years. Even still, he said to me a few days later, "so whats so different than from before the diagnosis?" I again sat him down to explain that I was no longer in denial about it and was coming to terms with the many issues in my life including just how darn tired I really was and how hard it has been.

He is getting it but I have really had to help him to understand - usually by putting it to him as if it was his life and had happened to him.

I think OSA is sort of like alcholism was 75 years ago - people thought it was just something that people with poor charactor did because they couldn't snap out of it and get their lives straight. People are starting to know more but mostly, it is still not really well known. Try and be patient with your wife. Think of how you might tell her what you want her to hear. If she isn't understanding right now, maybe you should try another tack. Going to a therapist for a few sessions just to start practicing communication again might not be a bad idea. And get yourself back into bed, and maybe even into bed with her again!

kteague · Post by **kteague** » Tue Jul 22, 2008 1:00 am

I was just reading thru my post and realized that near the end I was being presumtuous about why you were sleeping on that futon. My apologies.

Your phrase about the cure being worse than the illness, I may be wrong, but I don't think you intended that to be taken so literally. I took it to just be reflective of how many sleep much worse when going thru the adjustment phase than with the OSA.

Unless you have other contributing factors to your lack of sleep, things should level off after a while and this can be just a part of everyday(night) life. Many report being restored to feeling normal or even better than before. Others of us improve, but not to our old selves. You will find that out in the next few months, and can live your life accordingly.

Get your sleep. And live your life. Anyone who has not experienced what OSA can do cannot know how bad it can feel. But they should be able to trust your word about it.

rubberchimp · Post by **rubberchimp** » Tue Jul 22, 2008 1:06 am

I think the effects of sleep apnea interact pretty poorly with the typical puritan work ethic that seems to pervade Western society these days... "tired" is so easily confused with "lazy" and judged as a personal failing. I don't know how we allowed ourselves to become so deluded as to think driving ourselves into the ground at the expense of our health, our relationships and happiness was a good thing... For years, I wrote my perpetual fatigue, mental fog and forgetfulness off as just not trying hard enough. These things come from outside for some folks and for others we're our own harshest critics
That can actually be pretty hard on those around when they try to build you up and you keep tearing yourself down...

SuperGeeky · Post by **SuperGeeky** » Tue Jul 22, 2008 1:21 pm

Thanks to everyone who replied! I'm a bit stunned by everyone's intuitiveness.

My wife has complex mental issues. Once in a while, she suffers post traumatic when bedtime nears. Her inability to relax drove me to sleep elsewhere.

I seek help from two social workers and twelve step meetings to take care of myself first and my family secondly.

As my tiredness progressed, I thought it was due to the stress at home. And, memory issues due to Atkins diet or 'Sweet and Low'.

The Social Workers encouraged me to pursue my health issues. Otherwise, I would have remained in denial. How lucky I am!!

Makes you wonder how 90% of sufferers remain undiagnosed! It's a fooler!!

What I'm hearing from the postings above, relationships and responsibilities suffer. Since starting recovery, I've had to change my phone plan. I have the energy to call people. My isolation is breaking.

It's much more than slapping a CPAP on your face at night and everything will be better. Someone mentioned above, BALANCE. Knowing your limits as you recover and negotiating responsibilites.

Knowing when to share with someone that you've been sick or keeping it to yourself.

I'm really fortunate that help is there for me. It's part of learning how to take care of myself. Right, you have to take care of yourself before you can take care of someone else. And, asking for help.

And, thanks for the clarification. 'The cure is worse than the disease'. The adjustment to that 'Thing' sucking on your face is a tough one. Sleep deprived, and then additional sleep deprivation. Painful experience! I'm so glad it's over.

I tried to think of the last time I woke up refreshed. I just don't remember! But, I'm looking forward to that feeling again. Well oiled machine with a clear strong mind

Mile High Sleeper · Post by **Mile High Sleeper** » Tue Jul 22, 2008 1:36 pm

Good for you, for taking care of yourself. Let those close to you know that you want to be around them in good health and vitality, not as a stroke or heart attack victim they need to care for, a tired grouch, or someone who has lost memory and capacity to work.

Most people downplay sleep apnea because they are ignorant about the condition and its effects. Maybe they would take it more seriously if it's called a "respiratory disorder" rather than a "sleep disorder." Let's say your AHI is 20. Ask them how they would feel if they were in a swimming pool all night and held their breath under water for 10 seconds or longer 20 times an hour all night, every night, for months and years.

Try the education approach, and involve them in the stages of recovery from sleep apnea. Getting through the collapse of the denial stage at the start is the hardest part. It usually takes months, sometimes years, to recover completely. But meanwhile, you can still keep up with family and work life, in a kinder and gentler way.

Related articles under the light bulb icon above:

cpaptalk-articles/sleep-apnea-prevalenc ... enemy.html

cpaptalk-articles/CPAP-stages-feeling-good.html

cpaptalk-articles/recovery-CPAP-adaptation-stages.html

cpaptalk-articles/CPAP-diary-hoseheads.html

cpaptalk-articles/CPAP-social-psycholog ... overy.html

Insomniyak · Post by **Insomniyak** » Tue Jul 22, 2008 2:16 pm

I am very fortunate to have a co-worker with CPAP. Only downside is, she could care less about data and forums. Drives me crazy that she just turns on the machine and uses it and goes by how she feels. Maybe I am complicating this, LOL. Actually, the few people I know that have this, don't bother with data, just by how they feel and what works for them.

My partner is pretty much indifferent, not an issue really. I can't understand that either.

My mom didn't beleive that OSA was that bad until I showed her the report I got and the information that goes with it. Mind you, she is a nurse practitioner, but OSA is not her specialty in the least. Once I gave her the first report, she couldn't respond to it for a few days. I think she was more amazed at all the things that OSA is a major cause of, and that it is more than just difficulty breathing and waking up 15 to 100+ times an hour.

Redefining Boundries with Spouse

Redefining Boundries with Spouse

Boundaries

Re: Redefining Boundries with Spouse

Addendum to prior post

taking SA seriously

Humidifier

Additional Comments: Cozy Hose, Hose Boss Management System, PapCap F Series

Mask

Additional Comments: Equipment isn't correct, S9 ASV w/H5i