help me understand what he's goin thru

[steelers gf]

My boyfriend ( ♡my sexy man) just got diagnosed with sleep apnea. He says I don't understand what he is going through. .. I'm trying ... Please tell me what I'm missing. I'm trying to be supportive, but I'm just not getting it. Love him to death, but if he doesn't explain it to me I just may kill him totally joking but I'm sure some of you can relate to him and your family can relate to me. He says he feels depressed, not happy anymore, ...Let me clarify that he JUST got approved for his mask and has yet to receive it, so everything is still fresh and we are not sure what to expect. He is having an avg of 18 episodes per hour and wakes up tired and moody. (I get that) but I try to get him to tell me what is wrong and I feel like he just pushes me away. I'm sure he's tired of me asking him what I can do to help. I DON'T KNOW WHAT TO DO!!! I want to hear what you have/had to go through as the patient and if you can tell me what your family went through and what maybe they did to help you succeed.. .. GIVE ME THE GOOD, BAD AND UGLY.....I need to know. Thanks

[Julie]

Hi - and good for you (and him!) that you care and want to learn... too many spouse figures are impatient and ignorant.

First of all, not having had proper sleep for who knows how long will make anyone 'depressed', a diagnosis so many of us hear for years until someone gets around to ordering a sleep study. Tell him he's now going to be BETTER, he's not going down a black hole or anything, but is getting FIXED! It's as if he had any one of a thousand 'conditions' people get when they're over 20 (and often before 20) and we all have 'something' to deal with. At least he found a fix, even if it takes a while (and it can) to get all the parts working properly... the equipment as ordered initially by the doctor, and/or the script for how to use it may need tweaking for a while before he feels a lot better, but it's vital that he keep at it, and there are loads of knowledgable and experienced people here to help (believe me, many docs and sleep techs at the dealer (the DME... store) are not well informed about actual use of so much of the equipment, even if they know the scientific background of sleep apnea! Which is why we're here.

What specifically do you want to know now? What will help us to help you (and him, of course) is to get the exact FULL name and model # (on the bottom) of the machine and the mask. Plus the pressure settings that are the prescription part of the deal - and the script his (at least a copy of it) by law, so don't let them mess him around about that. He should ask his MD or the sleep lab for the FULL report of his results - not just the summary - and even if he doesn't understand much, he can post it here (at least the summary part) for us to help with.

So ... more info please, and tell us what you need to know yourself.

[BlackSpinner]

First - read the wiki (light bulb) at the top of the page.

Second - don't ask 'what is wrong" ask "How can I help, I need to be useful".

Third - read the thread on dealing with change. It will apply to you as well as him.

[Julie]

She didn't ask 'what's wrong' and is begging to know how to help (her BF is obviously not very forthcoming, but may not yet know himself what's what of course).

[steelers gf]

Thank you Julie and Black Spinner

I appreciate the response and some info. .. as soon as we get everything in our hands and set up I think I can reply to you. In fairness I believe black spinner was responding to me saying that when he wakes up tired I say what's wrong? What can I do to help and him not knowing how to explain how I can help. I see that this is a delicate syndrome that EVERYONE takes very serious. .. PLEASE and thank you! keep the advice coming. I see this is not going to be a let's runaway for the weekend and solve it, but that we do need some time to figure out how to communicate each others needs. I do appreciate both your comments. Thank you Julie and Black Spinner

[kaiasgram]

Hi steelers gf: Couples therapist here (no really I am) -- Based on what you're saying, it sounds like your bf is not ready to talk about what he's feeling about all this. It definitely can be overwhelming at the point of diagnosis. Don't kill him -- yet -- because chances are he can't actually explain a lot himself right now. If you start reading some of the first-time posts here from newbies just diagnosed, you'll see how lost most people feel in the medical maze when they're just diagnosed.

Would you say that not wanting to talk about his feelings is different for him, or is he usually very open about his feelings?

Possibilities: Sometimes newly diagnosed folks are in shock about the idea that they have to use mask and machine every night for the rest of their lives. For some the thought is overwhelming and depressing, and even anxiety-producing. In my practice one or two guys have even said it makes them feel like a wuss. Others worry that it will be a turnoff for their significant others. These are not easy things to talk about. Then there's just the "I don't know what to expect" uncertainty that can be really disturbing where health-related issues are involved. Add to all these possibilities the very real fact of his being sleep-deprived (we don't know how long he's had sleep apnea) and it really can paralyze a peson until they get more information and treatment gets underway.

I do think it's a great idea for you to do some reading here on the forum (the links at the top are the best place to start). Let your bf know too about this great resource that you found, let him know you're available for talk/support/research assistance when he's ready, and then maybe give him a little time to sort things out. I think I would have had a hard time responding to the question of "what's wrong" back when I was first diagnosed, exhaused, depressed, etc. (especially first thing in the a.m. with an apnea headache and a crappy night's sleep ).

The good news is that he was willing to have a sleep study and is getting ready to try PAP therapy. He's already ahead of many people who know they have sleep apnea but refuse to "go there." I think if I were in your situation I would want to say "Thank you for doing this," because it will no doubt mean a longer and healthier life for both of you.

As things get going, people here will be happy to help both of you out. Probably the next step in terms of important things to know is to find out what machine is being prescribed for him, then come back here and let us know before he accepts it. We don't want him to get stuck with a "brick" -- a cpap machine that does not record data to help doctor and patient know if the therapy is actually working.

Hang in there, and keep us posted.

[space45]

it is all new to him as well, most likely he has no clue, just knows things are not right, or he maybe thinking thinks are normal and not aware that he is the way he is.
it is amazing what we can get used to and feel things are normal. even if we are bummed out we may not know it for sure, add to that not thinking clearly and worried your getting to old to fast and not sure how to stop or slow it down, and then have someone asking what is wrong or what can I do to help, my response would have been, "hell if I know". you have no idea till your on the machine and suddenly feeling better, then you know, but till then your in a brain fog and fighting to keep things going, not falling asleep, keeping things looking and feeling as normal as possible and being as alert as possible at all times. that is a full workout all in its own. when one wakes in the middle of a nights sleep, lots of times you have no idea why or how come. your just suddenly wake, no real reason. if we knew why and understood what was going on we would know we have sleep apnea, not having to be told by our bed mates or docs. thing is the person afflicted by sleep apnea is the last one to know, and until they are on a machine and are getting well they have no reference to even have any idea why they need it or that things where not right before. to then they are normal, things are normal, nothing wrong here so keep moving. when someone insinuate things are not right, how is he to respond? he is more clueless then them, they at least know things are not right. he still has his head in the sand and is believing things are A OK, you or someone asking him these strange questions is more confusing to him then his reply's are to you.

just know things will be better with a machine running at nights, he will begin to realize he was in a fog and will start to understand why you were asking and doing what you were doing and asking. till then he is in the dark and is wondering about you not being right of mind...LOL

things will get better, but be aware he will have more energy and be more into being with you more intimately and be way more into getting things done and going, the mellow fellow you know will most likely become a more driven and full of get up and go type guy. be forewarned as he could become a real rocket ship, more so if he feels he need to make up for lot time in the fog.

one thing is for sure, things will change, you will need to decide if they are good or not so good. he may get a tad angry at all the lots time and incompetence of the docs over the years for not sending him to a sleep doc earlier. so be aware of that. he may get mad at first but that will disappear and he will become more himself but on steroids.

let us know how it goes for you.

[steelers gf]

Thank you Kaiasgram,

Thank you for the support. .. we may need you privately haha. He actually gave me this website. He wants me to understand and I've been looking on medical websites (web md etc.) cause that is the first thing people usually do. It is hard to get him to explain his feelings, until he met me, ... I do think right now that he is going through so much stuff that he just doesn't know where all to turn and is spinning with info. The plus is that he is excited to get the machine (his words) and get started. He has that want for some better sleep.
I will show him this thread so he gets the info about the machine. .. get back with you all when he knows hugs and ♥ to you all.

[kteague]

It's refreshing to see a significant other desiring to understand and be supportive. That attitude will go a long way. A friend of mine once gave me a "talking to" when I couldn't understand some things about her medical situation and how she was feeling and handling it all. She told me that she didn't need me to understand, she just needed me to believe her. There was something about my questioning process that made her feel devalued, like I was being presumptuous to even think I could possibly know better than she how to handle her health crisis. After all, she was the one going through it. Her talk with me caused me to measure my input (although I was only trying to be helpful). I stopped giving her 50 questions in my search for solutions every time she had a difficulty. I had to try harder to discern when she was asking for help and when she was just venting or needing someone to lean on.

Sometimes your loved ones can't explain things to you, as they don't fully understand it all themselves. They may just know they can't get a grip on life. I know when I was at my worst, the hardest thing was feeling like I wasn't meeting the expectations of others. I felt like I was being judged and was helpless to offer any defense for my inability to "show up" for life. I was in survival mode and had to conserve my energies, and really didn't have the wherewithal to discuss much. Your guy most likely is tired, sleepy, irritable, and having a general lack of interest in some things that may have once interested him. It may be that only those things that are very stimulating, as in events and activities, can rouse him enough to get enthused about participating. It doesn't mean the other parts of life aren't important to him. It just means it can take a lot to pierce that veil of oblivion that can come with sleep disorders.

The good news is, that phase will hopefully soon improve with treatment. Some go through a lot of adjusting initially with treatment, so if he gets frustrated, encourage him to persevere and let him know you look forward to seeing him feel better and more fully enjoy life. You can read on here about his equipment and tips on optimizing treatment if he needs your support in that way. Be prepared in the beginning for him to not feel rejuvenated right away. Sometimes it's just like that. But if he is willing to utilize the treatment and you can know through data it is effective, you have every reason to be hopeful things will improve. Congrats again on your desire to be supportive of him.

[kaiasgram]

Thank you Kaiasgram,

Thank you for the support. .. we may need you privately haha. He actually gave me this website. He wants me to understand and I've been looking on medical websites (web md etc.) cause that is the first thing people usually do. It is hard to get him to explain his feelings, until he met me, ... I do think right now that he is going through so much stuff that he just doesn't know where all to turn and is spinning with info. The plus is that he is excited to get the machine (his words) and get started. He has that want for some better sleep.
I will show him this thread so he gets the info about the machine. .. get back with you all when he knows hugs and ♥ to you all.

OK, things are looking even better if he asked you to check out this forum ! And he's excited about getting started -- excellent! I think you and your ♥ man are going to do really well with this whole deal!

[schneider4]

I'm glad that your significant other is looking forward to getting started. From my perspective as a 3+ year veteran of CPAP, I suspect he'll eventually reach a place where the CPAP is just part of the bedtime equipment and routine, like using a blanket and pillow and wearing pajamas. And he'll probably sleep better now than he has in years.

Thank you Kaiasgram,

Thank you for the support. .. we may need you privately haha. He actually gave me this website. He wants me to understand and I've been looking on medical websites (web md etc.) cause that is the first thing people usually do. It is hard to get him to explain his feelings, until he met me, ... I do think right now that he is going through so much stuff that he just doesn't know where all to turn and is spinning with info. The plus is that he is excited to get the machine (his words) and get started. He has that want for some better sleep.
I will show him this thread so he gets the info about the machine. .. get back with you all when he knows hugs and ♥ to you all.

[steelers gf]

You all are the greatest. .. I know I am a fix it myself kind of girl. .. need to learn to be a I'm here to support your journey girl. I am looking forward to him being the fun, loving, living man I'm in love with. I see that this is just the beginning BUT I STILL WANT THE WEEKEND GET AWAY HAHA. .. Thank you for opening my eyes everyone

[sleepy1235]

People who are severely deprived of sleep, whether apnea or insomina, can have real mood swings. Sometimes you just need to listen and also not respond to things he might say. Believe me he might say some really difficult things.

Just make sure he uses the machine when he gets it.

When the sleep is restored he might feel embarrassed by some of the things he has said. Make it clear that you understand it is the sleep problem not him speaking and he doesn't have to apologize.

Again, make sure he uses the damn machine when it shows up and not make excuses. Incidentally, for spouses with insomina make sure he/she takes the sleep medicine.

Also, I recommend nasal pillows. This forum has many people complaining about face masks. Maybe pillows just work really well for me, but it would be a shame if the CPAP machine was rejected because of a face mask being uncomfortable.

[Pugsy]

Welcome to the forum.

When he gets his machine and mask...give it a brief (couple of minutes while awake) trial just to see what it feels like to be hooked up to the mask and machine. It will be an eye opener.
He may take to this therapy like a duck to water or he may have some difficulties. Just be there...don't expect to fix everything for him as much as you might want to. IMHO the mask presents the greatest chance for bumps in the road...leaks and comfort with the mask.
Just keep reminding yourself and him that there really aren't any new problems that haven't been experienced by numerous other people and successfully worked through with patience and determination. I have been here nearly 5 years now and the problems people have are the same problems that newbies had 5 years ago.

[BlackSpinner]

Thank you Kaiasgram,

Thank you for the support. .. we may need you privately haha. He actually gave me this website. He wants me to understand and I've been looking on medical websites (web md etc.) cause that is the first thing people usually do. It is hard to get him to explain his feelings, until he met me, ... I do think right now that he is going through so much stuff that he just doesn't know where all to turn and is spinning with info. The plus is that he is excited to get the machine (his words) and get started. He has that want for some better sleep.
I will show him this thread so he gets the info about the machine. .. get back with you all when he knows hugs and ♥ to you all.

That is good. One of the effects of sleep deprivation is that it makes it hard for your brain to understand new things. When I first was diagnosed I came here and read and none of it made much sense to me - and I am/was a computer programmer web developer, my job was figuring out how to do new stuff. Within 2 weeks of using my cpap I suddenly understood what they were saying about the machines, masks and everything. (I had a really easy time adapting to cpap) So if you can do the hard work of understanding the machines and keep the sales staff at the DME from screwing him over because he is sleep deprived it will make his road to effective therapy so much smoother.