What sleep apnea has meant for me

I haven’t run into anything like this anywhere, and thought it would be interesting and potentially helpful to researchers looking into apnea and how it impacts people, or other apnea patients. So here we go. What has having sleep apnea meant for me?

For years, pretty much since high school I remember my mom, and when I got married my wife waking me up telling me I wasn’t breathing when I was sleeping. As I got older, and by older by the time I was in my late 20s, I was still in college, gaining weight, always dead tired, and nobody, not even my doctors would tell me what they thought was wrong…

By the time I was 30, if things got slow at work, and I even paused for a minute or more I would nod off, still no diagnosis.

My love of camping, and the outdoors, and just being active was dying. And I was starting to gain weight, fast…

Finally by my late 30s, I went on a hunting trip with a friend with apnea, who suggested after hearing me snore all the deer away overnight, I talk to my doctor specifically about it, I got a referral to a sleep specialist, and people were just starting to talk about sleep apnea, which at the time I thought was a complete malarkey term. Just another fashionable syndrome of the week. But by this time, my health was plummeting, and I felt like a self powered corpse. I was having constant headaches, couldn’t concentrate and just was downright miserable. I could sleep 24 hours straight and not be rested.

Then the sleep study. And they showed me the results which were eye opening. Then the second to test for tolerance for CPAP, The doc set me up with a CPAP, mask, hose etc… and they walked me through how to use it.

Almost overnight, I felt human again, if I allowed myself enough time to sleep that is, no more constant migraines, no more nodding off at work, no more fighting to NOT nod off behind the wheel of my truck.

It was at this time I found a problem.

I still wanted to go camping, go to the Renaissance festival with family and friends and camp overnight (no services), go on fishing trips (no services) or hunting trips (there is a trend here). I didn’t know then you could run a CPAP off fo a car battery with an adapter… I wish I knew then what I know now…

Well several hurricanes, and one broken CPAP later, and I have learned a good deal more. I was able to afford a dedicated travel CPAP, and at least a basic way of powering it after watching LOTS of youtube videos on the subject.

Now I have activity back in my life, I am still dangerously overweight, but the weight is coming down, and my numbers are getting better all the time. I have been blessed enough to avoid Diabetes so far, and no high blood pressure which is astounding considering my weight,

For me at least, the difference in quality of life between CPAP treatment, and no CPAP treatment has been a two edged sword. Insurance wouldn’t cover the cost of the adapters, and I knew nothing of them at first, so in order to keep feeling like I am alive, I had to be tethered to the grid somehow. Which was in its own way, another kind of dead feeling. Now that I am able to provide power to my CPAP and travel away from a power outlet, my life is coming back.

I just wish I had known what I know now, years ago. The lack of information took a lot of the joy I get in life away.

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Thank you very much for sharing. Your insights will benefit all of us.

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It intrigues me what I see others talking about therapy itself, but I rarely see anyone saying anything about the facts of having apnea before and after therapy…

Everyones story is a little bit different, and I am not sure how useful this will be. But I see folks that are struggling with CPAP therapy, and I am hopeful that seeing stories of positive results might be encouraging. I am not saying CPAP is perfect, far from it, but it sure beats not being on it.

My biggest frustrations that I was trying to make clear are the first fact that I went so long without knowing what the problem was, and was probably damaging my liver with copious amounts of over the counter headache meds, the doctors just never really dug to find the problem. I finally found a doc that was good at what he does, and suspected the whole apnea thing, and pointed me in the right direction.

My second frustration is one of how limiting being on CPAP therapy can be, and how dependent it makes you on reliable and clean power. And how little information there really is on how to come up with an effective off grid solution for those of us in harms way due to geography, or recreational activity. Having apnea and the gradual worsening is a REAL lifestyle change. My pulmonary specialist and insurance provider haven’t been terribly helpful.

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I’m still working on finding my voice to tell my story. I’m not the type to complain about things but I am aware of the benefit of speaking one’s truth. So I work on that. What does stand out about what you had to say is if I only knew back when what I am learning now how different my life could be. I hold on to what I have learned and making things better but it is still daunting to deal with and I keep reminding myself that I just didn’t know and couldn’t have done better without that part. I know now and I work on getting better and I have better days but when I don’t it’s hard to deal with.

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