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JohnBFisher wrote:As usual, you have my empathy. I've been having a few bad nights due to horrible cramping and very low patient triggered breathing. The morning headache is back. Ugh! Hopefully, this is just temporary.

But when the cramps start to hit, I head out of our bedroom. I try not to awaken my wife, but my cries of pain invariably awaken her. It gets HORRIBLE. I really try not to be a burden. I try not to bother her. And I also get depressed and frustrated. So, I do understand.

John, I am SO sorry that you are dealing with that. I, too, understand. My pain is a more constant aching rather than a cramping. I would get up and leave so as not to disturb my husband, but my rollator makes enough noise that it wakes him up anyway -- and I cannot (should not even attempt) to walk without it. Plus, shutting off the ventilator & oxygen changes the noise in the room and that wakes him up as well. It's a no-win situation for me -- Stay in bed and try to stay still so as not to disturb him or get up and definitely disturb him. When asked, he prefers that I stay, probably so he can keep an eye/ear on me and make sure I'm still alive.

JohnBFisher wrote:So, let's tip the glass (of water) back for those special saints among us, who care for us and who we are privileged enough to have married. 8^)

Amen there, John. My husband IS a saint and I appreciate him more than you know. However, I sometimes feel so guilty that he got "saddled" with a disabled woman and wish like the dickens I had never met him (for his sake). He deserves better, with a wife that can actually DO things with him rather than sit/lay around all the time because of some stupid disease that takes away every simple pleasure in life.

torontoCPAPguy wrote:I have one question for you. Are you dreaming when you sleep? If not you are not hitting REM and have issues to deal with of course.

Yes, I am dreaming. I don't remember dreaming every night, but a lot of times I do.

Madalot wrote: Amen there, John. My husband IS a saint and I appreciate him more than you know. However, I sometimes feel so guilty that he got "saddled" with a disabled woman and wish like the dickens I had never met him (for his sake). He deserves better, with a wife that can actually DO things with him rather than sit/lay around all the time because of some stupid disease that takes away every simple pleasure in life.

That is not the way to think. It doesn't help either of you. Yes this is a challenge for him, but he is rising to meet that challenge, he is learning great things about himself and all the strength that can be gained from that. He stays for a reason, and that reason is you, not your body, but the person. Respect him and allow him to support you in that quiet way he has been. He is the safety net under your trapeze. Yes he re-acts when things go bad, he is human, but he is still there and he can take it and he is probably very proud of being there and "taking it".

Before you walk into the doctors office. look him in the eye and say you are going to sound much worse to the doctor then he has seen you before but the only way to get the person moving is to lay on heavy, he is to just be your strength so you can get it all out and later you can discus your new strategy.

BlackSpinner wrote:... That is not the way to think. It doesn't help either of you. Yes this is a challenge for him, but he is rising to meet that challenge, he is learning great things about himself and all the strength that can be gained from that. He stays for a reason, and that reason is you, not your body, but the person. Respect him and allow him to support you in that quiet way he has been. He is the safety net under your trapeze. Yes he re-acts when things go bad, he is human, but he is still there and he can take it and he is probably very proud of being there and "taking it". ...

That is wonderfully said! Great job. Madalot, I definitely agree with BlackSpinner. Though you wish he did not have to suffer the situation, he is becoming much more of a very capable person by learning how to deal with a difficult situation. It is not how we deal with things when life is easy that makes us grow. It is how we deal with adversity that allows us to grow. And helping a friend who happens to be your spouse is a great way to grow. It is the heart of love. Caring deeply for another, regardless of the situation. That unconditional love is what makes us truly human.

BlackSpinner wrote:... Before you walk into the doctors office. look him in the eye and say you are going to sound much worse to the doctor then he has seen you before but the only way to get the person moving is to lay on heavy, he is to just be your strength so you can get it all out and later you can discus your new strategy. ...

Another great suggestion. Treat it as role playing (good cop/bad cop). Pick a roll and have fun. It helps.

I appreciate what you all are saying. I really do. And as I've said to my husband many times, if the tables were turned, how would HE feel? If he really tries to visualize himself as the disabled one, he gets a better idea of how I feel (and vice versa).

It's very hard to explain what's going on -- the weakness, the pain, the fatigue. OMG the fatigue. I feel like I spent most of my time sleeping and when I'm not sleeping, I'm struggling just to be home do the BARE minimum of anything.

Sometimes, I log into chat around mid day, hoping someone will pop in and keep me occupied so I don't fall asleep. I have to sit because my legs just will NOT keep me moving around, but once I sit, if I don't have something to occupy me, I can't stay awake.

I gave up today around 1:30 and laid down to nap. I even masked up because the struggle to breathe is disconcerting. I had trouble falling asleep because of the leg pain, but finally started dozing off around 2:30 or so. Family showed up unexpectedly around 2:45 and woke me up.

All I want to do is curl up and go back to sleep...but I can't.