Beth's Story
Being the wife of an OSA patient is definitely not easy. I never dreamt that when Michael and I got together I would soon be fearing for his life, but it happened!
I knew before he and I got together full time that he had some strange malady called "sleep apnea." I had heard of this before, but I wasn't exactly sure of what the term really meant, nor had anyone that I knew had it - at least not that I knew about.
After Michael and I were together as a couple, I still wasn't sure what this problem was. He occasionally would use this machine that sounded like a wind tunnel with these little plugs with holes in them up his nose
with this long tube attached and air would blow out. He looked a little like one of those Star Wars creatures with all the hoses coming out of its nose that was in the bar scene, and he sounded like Darth Vader with the sound of the air blowing in and then him blowing out. But he didn't use this contraption too often. He said he felt extremely claustrophobic while using it (which we found out was due to an incorrect pressure setting). He could manage about an hour and then, even while still asleep, would tear the thing off and throw it to the floor!
When we first got together, I slept like a log. But, as time went by, my sleep began to be disturbed by this "problem" of his. I would wake up to find Michael sitting on the edge of the bed, rocking forward and backward, then lurching, as he would nearly fall onto me, at last waking himself up. I would ask him to lay down, tell him to lay down, prod him to lay down and sometimes eventually would have to put my hands on his shoulders and pull him down back onto the bed.
At times he would actually fall backwards and land with his head in my lap, rudely awakening me. He would then bounce back up and usually head for the bathroom, where he would spend at least an hour sitting on the
toilet - bobbing and weaving there too.
I eventually got to the place where I would wake up virtually every time
he did, and listening for him to breathe as he would fall back asleep. Sometimes he would not take a breath for so long that I would gently shake him and tell him, "Honey, breathe."
I was beginning to get scared!
By this time, Michael had already lost one job due to his non-productivity, which at first he attributed to a fierce custody battle - and that would definitely be enough for anyone to lose sleep over. However, now his lack of sleep was starting to affect his new job, one which he had enjoyed when he first began, but now was beginning to dread getting up and going to work because he was sleeping more than he was working and he was
once again in jeopardy of losing his job.
His employer strongly "suggested" that he go to the Employee Assistance Program in our hometown, which Michael did. He told the counselor about his problems - all of them - and she suggested he go to our family physician about the sleep problems.
Michael made an appointment with the doctor, went in and was given Ritalin, in hopes that this would help. It did for a short time, but then he was back to the same thing again of no sleep, etc. He had discussed his sleep apnea with our GP, who then suggested that he go to a specialist in our area that treated lots of patients for sleep apnea.
Michael's first appointment I did not go, and I always will regret that. As much as I love him, Michael just isn't a good relater of facts after the fact! However, one good thing came of the visit - they were going to do another sleep study!
Now, mind you, Michael had had a couple of sleep studies several years earlier. It was through his HMO, and they just don't seem to take the time that is needed with patients to find out what the problem exactly is, nor do they seem to take the time to fix it properly when the
problem is diagnosed. It was determined from his earlier studies that he needed a setting of 7 cm for his CPAP machine, even though it appeared a more optimal setting would have been around 15 (which caused the claustrophobic feeling and his never getting used to the CPAP from the beginning). Anyway, I digress.
Michael had his new sleep study on a Thursday night, came home exhausted the next morning from lack of sleep, and got a call later in the day that we needed to have his CPAP upped to a level of 22 cm!!! What an increase! The tech at the home health care facility even opened the office up after hours so we could come in and they could reset it without having to wait over the weekend! We figured this must indeed be serious.
His next appointment with the SA doctor (who is a pulmonologist, by the way) was not for another 6 weeks. The doc wanted time for the test results to be studied and returned to him with recommendations. We finally made it to that appointment and found out that Michael's
setting was the highest out of the more than 2,000 patients that his doctor sees. But, a setting of 22 was hard to "stomach," literally and figuratively!
I finally got used to the sound of a "vacuum cleaner" blowing in my bedroom night after night. I would even wake up when he turned the thing off. I still was having trouble sleeping due to his apnea because Michael was back to *not* using the CPAP again after just a short time. The pressure was simply more than he could take - making his nasal passages dry and sore, making it difficult to sleep with so much air pressure blowing in his nose and also causing a big problem with gas in his stomach. He could belch the Star-Spangled Banner with the best of 'em!!
Now, during all this time things had started deteriorating for us in the love department, if you know what I mean. He was tired so much of the time that he never felt in the mood for romance. I mean, he would
literally fall asleep in the midst of the act. Of course, me being a female, I started attributing it to the fact that I didn't have what it takes to keep him interested.
I don't intend to get graphic here, but these are, quite simply, things that we wives and girlfriends have to deal with in living with an OSA patient. And it's something that really needs to be talked about so that
others out there don't think that they are alone in this and that they're the only ones that feel that way. Believe me, YOU'RE NOT ALONE! I've been there and have felt the same things. And I've learned not to be shy about it when talking to others that are experiencing the same thing. So if you want to talk, don't be afraid that you'll offend me or shock me.
I've stayed awake listening to Michael breathing and NOT breathing countless nights. I've worried that I will lose him young and be left alone after I've finally found the perfect man for me. I've cried myself to sleep because I felt unloved and unloveable. I've been there, I've felt it, I've lived it every day for several years now.
But I can't say that I would change much over the last four years, except for Michael to have had the tracheostomy sooner. Oh, yeah, I was scared at first when he started talking about having a hole cut into his throat. I was afraid that I would be "grossed out" by the looks of it, that I wouldn't be able to deal with it. But I also knew that this was a sure-fire way to save his life. And I would do absolutely ANYTHING to save his life.
When Michael was in surgery, I was so frightened because it was taking longer than the doctor had told us it would. And of course, as we all know, our imagination can definitely be our worst enemy. But we had the support of each other, our family and our church family behind us, praying that Michael would be all right. And he is!
Sure, he's got this silly little plastic tube sticking out of his throat. But, you know, it's actually kinda sexy to me now because his libido is slowly returning to a more normal level and I'm not feeling "neglected" like I had before. We can even joke about it, which helps.
Michael is losing weight, which is good, because he had gained so much due to this life-long problem of his - and I just gained right along with him! So as he gets back on his feet and starts walking and exercising, I'm
going to be joining him - and we're going to get healthy together. Which is the way it should be. Ours is a partnership to the end and I feel blessed to have him as my partner!
If you would like to ask me any questions on a more personal level, please feel free to write me anytime. Just click on my name ~~~Beth~~~
and I'll be happy to listen, read, talk, whatever support you might need.
And remember - YOU ARE NOT ALONE!
Thanks for listening ~ Beth ö¿ô