Hi Everyone...

I've posted before mainly in the Help section of the forum... But I wanted to come here to this Spouses area to get some different support...

As some of you know from other threads my husband and I are are 25 and he's been recently diagnosed. We've been together for 10 years - married 2 of them... After we got married his health issues were very apparent and its taken us this long to figure out that he has been suffering from severe sleep apnea (in addition to asthma).

Anyway... Before we got married this man was my everything. If we had an argument it was resolved quickly and they weren't often, he was patient, affectionate, loving, out going, funny and just the love of my life... In the past 2 years of being married all of that has pretty much gone away. We almost parted ways because we thought it was marriage issues and then we got the diagnosis. Since then our focus has been on getting him healthy. It has not been easy in the least as I have been enduring a lot of hurt from him because he is NOT himself. The irritability, lack of libido, no kind words, feeling like we're more roommates than spouses and pretty much feeling like I was always annoying him has taken its toll on me. Not to mention how long its taken to get a proper cpap/mask set up for him. We got the cpap mid May and up until last week we didn't have a mask that fit properly. Now I am dealing with him taking the mask off in the middle of the night and not having any recollection of it...

Basically I've said all of that to say this... I feel like when I tell my story that I get down and depressed again. The reason: Because I miss the man that I fell in love with. To have our relationship hit such a low because of something we didn't realize just sucks. I feel like I am constantly getting discouraged because the cpap should be helping him by now and it really hasn't been because the masks made it inaffective. I'm frustrated and fed up with the affects the apnea is having on him... My light at the end of the tunnel seems like its a distant candle flicker...

I know it takes people different amounts of time to get over the sleep deprivation, but how have other spouses gotten through this? How did you deal with the irritability, no libido drive (when mine happens to be very high) and all the other symptoms that come along with apnea? How do you not get hurt by the condescending comments and live with someone you love and care about so much yet they show nothing for you? I have wanted to leave on several occasions but the commitment I made to our marriage and fighting to see the man I once knew is keeping me on task with getting him healthy. The words of his Sleep Dr saying what he has is completely reversable with the cpap, and other peoples stories on this forum keep me because I want him healthy and happy... But in the mean time until there is improvement and better compliance I am stuck dealing with irritable roommate... What hurts most are looking at our wedding and engagement photos when we were so happy and excited... To now a couple years down the road and I am posting my pity party on an apnea forum... Just is a tough pill to swallow at times I guess...

Anyway thanks to those who read for letting me vent... I know along this road I have been depressed myself because I feel like I lost my best friend. Untreated he is NOT the guy I know he used to be... and it hurts, its sad and depressing... I suppose I am not dealing well with it after all this time... Hopefully some of you will be willing to share how you've been able to cope... I guess thats what I need right now...

Thanks....

Dear Suffering,

Anyone of us could write a letter like yours, but you did so very eloquently.  I could have written the same letter about 20 years ago, only I had 2 young children and lived 1000 miles away from the closest family member. It is a lonely feeling when your spouse detaches.  Apnea is worse than awful and very few people understand how exhausted you are, too.  If there is pity, it is probably directed toward him.  

You deserve a lot of credit for continuning to search for the mask that will stay attached ALL night, and for continuing to keep the flicker alive a bit longer until he recovers.  Yes, you are looking for a recovery.

You may have to do an intervention by contacting the durable medical supplier and ASK them what else is available.  You could make an appointment if they have some good mask suggestions, or ideas about fitting his current mask.  There are quite a few types available including one that is similiar to a nasal canula.

When you fly in a plane, the attendants demonstrate what do do if the cabin loses pressure.  When the oxygen mask drops down, fit it on yourself before you help fit it on your fellow passengers.  It is a good demonstration about taking care of YOURSELF before you can take care of HIM.

Questions:  Does he feel hung up about wearing the mask?  Does he feel angry that this happened to him.  (It's happened to both of you.)  Is there  a problem going on at work or elsewhere in his life?  

My husband would fall asleep at the dinner table, in front of the TV at 6PM, anywhere that he sat still.  His libido was non existant, too.  All of that will come back to a normal range IF it is related to apnea.  It's funny, but that was about 20 years ago, and only seems like a little bump in the road now.  We've been happily married 37 years.

Don't give up.

~Dianne

Thanks Dianne for your post... Same here, my parents and sister moved to TN shortly after we got married. So I am kinda alone here too. Thank God for free mobile to mobile on cell phones.  

To answer some of your questions he just got re-fitted by his sleep Dr. last week and we received the new mask last Thurs before the holiday. The mask fits, but he is still snoring. I've been told how to adjust his pressure so I bumped it up to where he can sleep on his side and not have any snoring. I'm planning on calling his sleep Dr again to see what she suggests we do now. The new mask was the ResMed Quattro I think its called. Its more comfortable for him and he seems to be doing a tad better, he says he's status quo, but over the last couple days I have noticed slight changes in his personality. I am going to keep in closer contact with the sleep Dr now because I don't want time to pass and eventually get so burned out on it that I give up.

As for feeling hung up with the mask... Yes, he is depressed every night when he has to put it on. At first when he got it he wouldn't want the lights on when he put it on and yeah I could say angry. When ever we talk about it he gets uptight and ends up taking it out on me when I am just trying to help. And yeah he doesn't quite get "it" when it comes to happening to *both of us*. We're in it together and it affects the both of us. There are lots of times where he gets stuck on himself and forgets that. Which makes me quite angry because I am losing sleep too to make sure he keeps the mask on not to mention dealing with the after affects... I wish he'd just talk to me like he used to instead of bottling it all up... Because eventually I bear the brunt of it.

Before his symptoms got really really bad he was still... "himself" but I was noticing that he wasn't the same as before we were married. I thought it had to do with his severe asthma flair ups and adjusting to married life... I feel that it was the starting of the apnea and we didn't know it. I think he's been going down hill for at least 2 1/2 years now.

Wish us luck that the sleep Dr can help us finish working out the kinks of the cpap. I am so ready for him to start feeling better... *sigh*

Welcome! I too have just found out my husband is suffering from SA. It takes a lot of patience and support right now and it sounds like you get A+! I wish you much success!
Thru the years we've been married--(going on 23 now) I've found that when 1 person in family gets ill--we all get it. (we'll not really) but illness isn't just a 1 person thing--it affects the whole family! You are giving him alot of support right now and that's what he needs. I too have noticed subtle changes in my husband. Mostly just exhaustion and it effects me as well--because he's not sleeping well i'm not sleeping well etc. When we first figured out that he may have SA then i started "digging" for any information etc. about it. These boards have helped tremendously. Then once he was resigned to maybe i might have SA--then it went to I aint wearin' no mask! lol--now he's at the point where i want the mask now if it will help! all this has transpired over a period of a couple of weeks. We're now waiting for the sleep study he took last Saturday. Hopefully if needed they will be able to schedule the titration b-4 his next dr. appt at the end of the month. He is so anxious to just get the show on the road so to speak and finally get the treatment he needs. It's alot to ask right now but see if you can take walks together or "date" nights etc. find time to do some of the things you used to do--although i do understand it's tough right now because of his exhaustion.  Most of all give him some time and patience and understanding which it sounds like you've already been doing.
Soon, he'll get feeling better once again!  stick to the boards for support and help--they've been a wealth of info alreaady for me. educate yourself as much as you can--this helps. Hugs! and good luck

Suffering,

If you are in contact with the doc, please tell him most of the points that you told us.  Tell the doc that you're on duty ALL night trying to keep his mask in place on his face.  Especially mention the personality and anger issues.

My husband has a Respironic's profile lite gel-type face mask that fits well.  

Sorry that this has happened to both of you.  Wishing you well.

Dianne

I'm sorry that it's been such a tough couple of years for you.  We're in a similar position and I understand a lot of what you're going through.  My husband was recently dx w/markedly severe sleep apnea (obstructive, hypopneas, central and mixed) and is now using a vpap machine for treatment.  While we were hoping for an overnight cure, his pulmonologist reminded me that it could take 6-8 weeks before he noticed a difference in the way he was feeling.  Basically, hang in there.  See what you can do to help your husband find a mask that works for him.  There are lots of options out there....something should be "right" for him.  Once he's getting rested, you should start to discover the man you fell in love with again.  I know how grouchy I can be if I don't get enough sleep in one night, let alone 2 years.  Encourage him to keep trying.  It can be really hard to get past the fear of the machine and there are many adults who simply aren't comfortable with wearing a mask at night.  Things should start to get better for you soon.  Are you working with a DME company for equipment??  They should be able to help you out with the mask issue....

Thanks everyone for your encouragment... Since I had written the original post from when I was really down, some good stuff happened and now... I am back down again. I have the pendulum post on the Help forum... This is the cycle I live with. Right now its on the bad side again... This past week and weekend things were good and almost normal... We had a fantastic weekend for his birthday and even for the days leading up to it... And now he is gone back to jerk roommate... I just love my life...

Now I am back to feeling fed up and depressed again... Makes me wonder if this is going to be my life until I can't take it anymore or if its only for a short time longer until he finally gets used to the cpap... I hate having the person I love that I chose to marry and stay with all these years think the absolute worst of me...   But with the cycle I notice when hes on his way back to the horrible jerk his body finally allows him to get sleep, then he swings the other way and can be a perfect gentlemen. Constantly this is happening...

In the coming weeks if we last that long I will keep posting to keep those of you that follow the few threads that I do updated.

Thanks for the continued support and I am sorry for such a downer post.

You need to tell him what you are thinking.  Tell him you "don't like it when he treats you like that".  Or say, "I don't like it when you do that".

You're not saying that you dislike him, but that you dislike his behavior.


Dianne

Suffering, did he drink any alcohol for his birthday?  This could be a problem if he did as it can cause apnea to be worse.  Just a thought.


_________________
~ElleMarie~ One day at a time, ARE YOU KIDDING ME! Sometimes it's just a minute at a time.



AHI 100 -Diagnosis June 2007-

Very little, not even enough to get buzzed. Its been hot in our apartment and we both dont sleep well when its muggy. We have 2 fans going all the time and our sliding door open all night, but sometimes it just doesn't help. I think thats part of the reason he's been having issues this week.

I've reached indifference with him right now. He left for Vegas today to go see a concert with 2 of his friends and I didn't even want to say bye. I forced myself to anyway and I think it just fueled my fire. I think being alone tonight will be a good thing for me so I can kind of cool my jets, regroup and maybe get some good sleep.

Hot weather can cause the mask to slide in his sweat.  Maybe it isn't fitting properly.

Well the latest mask was fitted by the sleep Dr so its a good fit, I just worry about the pressure because he is still snoring with the new mask when he's on his back.

I've told him he needs to follow up with his Dr and he has yet to do so. He keeps forgetting.   And this is the same man that tells me he can handle this on his own. Puh!  

He shouldn't be snoring.  Most probably pressure isn't correct.  

Tell him that shince he has been very busy, you will help make the appointment FOR him.  If he rejects that, ask him when he might be albe to make the appointment...have the phone number in front of you.  ;)

Due to recent cirucumstances I am not really sure what will help...

My husband came across this thread yesterday and is now not speaking to me. Apparently he disagrees with how much this has had an affect on me and what my intensions were when I joined this forum. Perhaps if he looked around at other posts he'd see that I am not the only spouse crying out for help on here.

I had no where else to turn and you guys have been so very helpful to me... For that I thank you all... I wish I had a better update to share. Unfortunatly now I am thinking this could have been the last straw for us and now I am expecting the worst when I go home tonight.      

I wish everyone else the best with their spouse's and their recovery.

Sincerely,
Suffering Spouse

I'm so very sorry that he is offended by this thread.  We wish you both the best, and hope that he gets better sleep soon.  Tell him that I apologize for anything I said that may have offended him.