I mentioned in my last post that I’m going to start using a CPAP machine soon. It’s used for sleep apnea, which isn’t too uncommon, so most people know someone who has tried one, or have tried one themselves. It was just a small note that had little to do with the main point of my article, but still, I noticed that no one commented on it, even though they commented on other parts of the article. I noticed it because that’s not what’s happened with my in-person interactions lately.
I can’t criticize people for commenting on other’s lives, because I do it too. Actually, I probably do it more than most people. But there’s a big difference between commenting and pointing out the negatives. What’s even worse is that in this case, people are pointing out negatives without offering solutions. So why are they doing this?
For years now I’ve been fatigued. I’m unable to work. I barely date. I miss all sorts of social events. I feel lousy. Now we discover that I have a form of sleep apnea and a CPAP machine could help. There’s no guarantee, of course, but it might help, so why on earth wouldn’t I try it? In fact, I’m excited to try it! That’s why I’ve already mentioned it to quite a few people, and why I’m so annoyed that almost every single time, the response has been to point out potential problems with it. They tell me about a friend who was bothered by the noise, an ex-lover whose skin was irritated by the mask, an acquaintance who got tangled up in the cord. They tell me about these problems and I don’t know why. Are they suggesting that I shouldn’t even try it because one person they know had a problem with it? Are they suggesting that I continue to feel horrible and not even attempt to fix it because I might be inconvenienced?
Well let me tell you, I’m already inconvenienced. A lot. And I’m not about to let worry about some little inconvenience stop me. If that was the case, I wouldn’t have changed my diet and I’d still be feeling nauseated all day every day. If that was the case, I wouldn’t have changed my thyroid medications and found the improvement in energy levels that I have. If that was the case, I never would have done my own medical research. If that was the case, I wouldn’t have improved at all over the last 2+ years.
Today I emailed my family and friends with a health update. I do that occasionally. When I mentioned the CPAP machine, I included this:
“Note: Please do not tell me how terrible CPAP machines are. Just don’t. Almost every person I’ve mentioned this to has told me they don’t work, they’re loud, they’re ugly, they’re uncomfortable, etc. If I had a gas leak, would you tell me not to fix it because of the hassle of calling the gas company? If I had cancer, would you tell me not to get chemo because of the side effects? No? Ok, then please don’t say anything negative about this medical treatment unless you’re also telling me how to fix said problem.”
So far, I have received only positive or neutral feedback. They’ve congratulated me on taking this step. They’ve said that they hope it works. I got one story of a friend who was helped by it. So from now on, when I tell people about the CPAP machine, no matter how well I do or don’t know them, I’ll preface it with that paragraph. It may be rude, but I don’t care. Taking care of my health is the hardest thing I have ever done, or probably will ever do, and I don’t need the “help” of negative feedback from ignorant people.
Oh, and by the way, I’ll get the CPAP machine in just two short days! Yay!
Don’t listen to the naysayers!! I was anxious at first and a few people told me they were a pain, etc.. You will try it (it will help!) and you will have your own experience with it. I don’t have a clue why people do this I really don’t. I live with RA and Fibromyalgia, talk about exhausted (!) and tomorrow i will see my rheumatologist and i can almost guarantee she will be taking me off my current med of Orencia and trying something else. This is very frustrating as this will be my fourth med in fifteen months! Already i am hearing things like “your Dr. Doesn’t know what she’s doing” and “you need a second opinion” Umm, no I don’t. I have one of the best rheumatologists in my state and i respect and trust her. I know these med departures are frustrating for her s well. I guess we will find out tomorrow. As for your cpap, you will love it! I have never slept as well since i’ve had it and I no longer snore, nor am I exhausted during the day. You will find your way with it and how to work out the initial kinks but i know you will be sleeping better in a few weeks! Good luck!
Thanks for the support Mary! I hope things went ok at the doctor, too. I’m also getting “advice” constantly to seek another opinion, even though I’ve seen other rheumatologists who all say the same thing. People can’t understand that science doesn’t have all the answers, especially not right away. Good luck!
My brother in law is delighted to be able to sleep again. My friend feels v50 % better and thinks her life is saved
On Twitter my friend @brainsneedsleep is a crusader. She actually suffered brain damage from poor sleep
Thanks so much Annette! I’ll check out your friend’s twitter feed.
Happy experiment with the C-Pap to you, CR! They have
helped many friends of mine, too.
and I’ve heard that the newer models are much quieter than they used to be.
(There’s also a “dental appliance” that looks sort of like a night guard, to help keep your throat open while you sleep… sold mostly as an anti-snoring device – have you heard of them?
Thanks Karen! Yes, this machine isn’t very loud, and I normally use white noise at night anyway, since I live in the city. As for the dental appliance, my doctor mentioned it as a possibility down the road, but he wants to try this first since there’s a better chance of success with it. Hopefully that will be an option for me at some point.
Hi, I think it is wonderful news! I think that unless you are fatigued you don’t really get it and yes you are right people are negative! Haven’t worked out why?On a Facebook group I belong to for fibro several use a CPAP, they say there are different masks as well, so if one doesn’t suit you can try another. They also say how much of a difference they make. Because of your foray into sleep difficulties I am going to ask my doctor about alternatives. I’ve tried drugs, either didn’t work or made me feel bad.
Am having a bit of a flare – two deaths in the family within a week, one not so close but the other my sister in law who was wonderful and totally understood and supported me. My hubby is numb.
Hugs to you and your impending arrival. X
Thanks for the support Lorna! That makes me wonder if there’s a Facebook group for sleep disorders. I already belong to several for thyroid problems, adrenal problems, and gluten intolerance, and they’ve all been incredibly helpful. I hope your fibro one is useful for you.
I also tried sleeping pills, but since my problem wasn’t insomnia, they just didn’t do it. And they made me feel hung over the next day. Then I started seeing a sleep doctor, someone who specializes in this and is one of the best in Boston (I was on the waiting list for 5 months!) This guy really knows what he’s doing, and I’d like to think there are others out there who do, too, so I hope you find one of them!
Best of luck with everything. I can’t imagine how hard it must be to deal with everything you’re going through. Remember to take care of yourself so your flare doesn’t get too severe or last too long, if possible. Get lots of rest, eat well, etc etc. Good luck.
I used CPAP during this current hospital stay. When I started, my sats were 45%!! When I finished with it, I had improved significantly enough to graduate to a face mask — within about 3 days maximum.
My doctors couldn’t believe how quickly I improved. Not a fan of the mask they gave me – equivalent of an astronauts helmet and impossible to communicate with my parents – BUT I can’t diss how quick my sats improved!!
Hoping and praying it gives you significant improvements to your sleep pattern and levels of exhaustion during the day 🙂
That’s so great that it helped you! So are you using it during the day? That’s what your description sounds like, but I’ve never heard of that, so I’m curious.
I hate when people do that. In response to me going for surgery…”Oh…you’re having heel surgery? But you won’t be able to walk for MONTHS!” (When I could scarcely walk as it was). Sigh. There’s a difference between commenting and making unnecessarily negative comments that do little to help calm an already worried mind.
Also, I nominated you for a Liebster Award 🙂
I don’t think they realized how anxious we already are, and how much their negative comments really hurt!! I hope your surgery has been/will be helpful!
Thanks for the nomination 🙂
Thank you! So far so good 😉