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I honestly don't want to post this, but I just have to.....
Okay. This is really hard. I just watched the video "This is hard to watch", per Mike's title. It is. I'm still crying half an hour later.
For any of you guys who want to deny that we're in real danger with this illness, just watch it. You'll hate it. Have your Kleenex on hand.
It's painful and scary beyond belief, but now I TRULY understand. Everyone needs to truly understand, especially if you're fighting treatment or having a hard time getting used to PAP treatment, like I've been.
I'm sorry if it's is inappropriate to put this up. I truly am. There's an irrational part of me that wishes I'd never seen it. But the alternative to treatment is way worse, believe me........NOW I understand.
Susan McCord
For any of you guys who want to deny that we're in real danger with this illness, just watch it. You'll hate it. Have your Kleenex on hand.
It's painful and scary beyond belief, but now I TRULY understand. Everyone needs to truly understand, especially if you're fighting treatment or having a hard time getting used to PAP treatment, like I've been.
I'm sorry if it's is inappropriate to put this up. I truly am. There's an irrational part of me that wishes I'd never seen it. But the alternative to treatment is way worse, believe me........NOW I understand.
Susan McCord
Views: 78
Replies to This Discussion
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Permalink Reply by D. W. Conn on
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Susan,
Once the shock wears off remember this... you are first and foremost Susan and you just happen to have sleep apnea. I do not want you to identify yourself with the disease. Do not become a sleep apnic with the name Susan. Apnea is not your identity. I know its tough and scary but learn, change, and place into practice this wisdom your healthcare provider passes along to you..
So go take a deep breath and have a great day,
you are SUSAN first!
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Permalink Reply by susan mccord on
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Thanks. I DID learn that in the aftermath of being diagnosed with heart disease 4 years ago. I know exactly what you mean. It's just so goddamn painful to watch this guy suffering, and his not even knowing it, that's heartbreaking. And knowing it could be any of us, WILL be any of us if we don't persevere with treatment recs. Trust me, I'm on board now in ways I NEVER was before.
I'm gonna continue to call you "Doc" even though I know you're not one. There are all kinds of "doctors" in this world. You are one of them, at least for me....
Susan McCord
D. W. Conn said:Susan,
Once the shock wears off remember this... you are first and foremost Susan and you just happen to have sleep apnea. I do not want you to identify yourself with the disease. Do not become a sleep apnic with the name Susan. Apnea is not your identity. I know its tough and scary but learn, change, and place into practice this wisdom your healthcare provider passes along to you..
So go take a deep breath and have a great day,
you are SUSAN first!
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Permalink Reply by RockRpsgt on
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Great advice Conn. I have been thinking alot about the way people approach their sleep problems. Which has had me thinking about how to handle my personal sleep issues. While apnea and sleep disorders are a very serious threat to our health. I think that we need to take a more relaxed approach to dealing with them. It does not help our sleep at all when we stress out on or over think the issues of sleep. This is more likely to make our sleep worse. it is very important for new PAP users to remember that despite the problems you are having today you are getting better treatment then you were yesterday.
D. W. Conn said:Susan,
Once the shock wears off remember this... you are first and foremost Susan and you just happen to have sleep apnea. I do not want you to identify yourself with the disease. Do not become a sleep apnic with the name Susan. Apnea is not your identity. I know its tough and scary but learn, change, and place into practice this wisdom your healthcare provider passes along to you..
So go take a deep breath and have a great day,
you are SUSAN first!
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I'm CERTAIN you're right, Rock. That makes total sense. I go back and forth, am pretty reactive and then settle down and don't think about it so much. That video caught me off guard and really got to me. It was a combination of such pain watching that guy suffer without even knowing it, and putting myself in that situation. I don't think that's going to happen to me 'cause I'm on CPAP every single night, no exceptions now. And that's the way it's gonna be. I'm a believer. In a way, today, I think it was good that it happened, 'cause I cried really hard for about half an hour. It's the first time I've shed a tear since I was dx'd. That response was way overdue.
It's a grief process, no question about that.....
I feel pretty good about getting adapted to CPAP this fast. It's been no more than a month. I'm certain the emotional stuff will ease with time. When I was diagnosed with heart disease nearly 4 years ago, I was the same way but with fewer periods of peace. It took a long time, but I've totally accepted it. I take care of myself, but it's more self-care in my mind than all that panicky stuff. I think going through that prepared me for this a lot. And honestly, I think my emotional recovery is moving faster now than back then. Guess we learn as we go in this life. The clear awareness of mortality is sobering on a good day. On a tough day, it's devastating, at least initially.
That's why I'm hoping to get well enough physically and emotionally to get back into practice so I can provide emotional support to, especially, newly-diagnosed patients. I worked with cancer patients and in Hospice for many years after many years in psychiatry. I think I have something to offer in THIS arena...I have a LOT of experience running (healthcare) support groups with cancer patients and their famiies which is even worse than this, by far, 'cause tx doesn't always work. I feel pretty confident that I'll be okay with this as long as I stay on CPAP. If I'm wrong I don't want to know it, at least not right now.
My regret about yesterday is that I posted it on SG when I was SO upset. I wish I'd waited till I'd calmed down so it wouldn't have been so intense. I'm afraid I may have intruded on people with MY temporary excess of emotionality.....I'm so used to coming to SG with EVERYTHING, that I think sometimes the boundaries get blurred. I certainly don't want to contribute to anyone else's pain about apnea.....
I so appreciate your input, Rock. You have a way of combining thoughtful feedback and real compassion at the same time. It's a great gift you have, and I'm very glad that you're so enthusiastic about your career.
Susan McCord
susan mccord said:Thanks. I DID learn that in the aftermath of being diagnosed with heart disease 4 years ago. I know exactly what you mean. It's just so goddamn painful to watch this guy suffering, and his not even knowing it, that's heartbreaking. And knowing it could be any of us, WILL be any of us if we don't persevere with treatment recs. Trust me, I'm on board now in ways I NEVER was before.
I'm gonna continue to call you "Doc" even though I know you're not one. There are all kinds of "doctors" in this world. You are one of them, at least for me....
Susan McCord
D. W. Conn said:Susan,
Once the shock wears off remember this... you are first and foremost Susan and you just happen to have sleep apnea. I do not want you to identify yourself with the disease. Do not become a sleep apnic with the name Susan. Apnea is not your identity. I know its tough and scary but learn, change, and place into practice this wisdom your healthcare provider passes along to you..
So go take a deep breath and have a great day,
you are SUSAN first!
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I feel your pain susan. I see people like that, or worse every night. Some patients are tougher then others. I bond with some right off the bat. Others no matter what I say I see it fly from one ear to the other. I have learned to treat the job like a job. Sites like this are my reward. This is where I get to see the good that comes out of what I do.
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Yeah, I hear that. Been there too. I'm so glad this is what fills you up 'cause I'd really miss your being on SG...
Susan McCord :-)
Rock Hinkle said:I feel your pain susan. I see people like that, or worse every night. Some patients are tougher then others. I bond with some right off the bat. Others no matter what I say I see it fly from one ear to the other. I have learned to treat the job like a job. Sites like this are my reward. This is where I get to see the good that comes out of what I do.
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Permalink Reply by Eric Thayer on
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The best thing about that video was that it was taken by someone who was trying to get someone out of denial. Sometimes folks in denial (like me) need a "teaching moment" to blow away the nonsense. Hopefully it worked.
Dunno about the ethics of it, but for some folks, it probably would be good for them to have a couple of outtakes from their own sleep study to help them with compliance. For me, the deal was set in stone by how fantastically better I felt even after the titration in my first study.
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Hi Eric--for me, the deal was sealed yesterday after seeing that video. I, like many others, have had a tough time adjusting to CPAP. And unfortunately, I'm not one of those people who immediately feels positive effects from a good night's sleep. But then, I know now that I've been having apnea symptoms for 35 years, so I've got some serious healing to do now.
Treatment's been an ongoing motivation issue, at least for me, 'cause of the mask/equipment issues and severe congestion/headache side effects. I'm getting that resolved again now, for the second time, so I'm happy about that for sure.
I'm now the Queen of Compliance!!!
Susan McCord :-)
Reality rules in my life. That was my reality check. Do you think it was a mistake to post my reaction on SG? Seems to me now that it may have been.....
I'D like to have had a video of my sleep study. That would have been interesting 'cause I thought I hardly slept at all, and they said I actually did. Seems weird to me, but there 'ya go!
Eric Thayer said:The best thing about that video was that it was taken by someone who was trying to get someone out of denial. Sometimes folks in denial (like me) need a "teaching moment" to blow away the nonsense. Hopefully it worked.
Dunno about the ethics of it, but for some folks, it probably would be good for them to have a couple of outtakes from their own sleep study to help them with compliance. For me, the deal was set in stone by how fantastically better I felt even after the titration in my first study.
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Permalink Reply by sleepycarol on
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In my opinion Susan, your reaction was one that many probably have experienced. Should you have posted it on SleepGuide?
I don't think this is a question that you should be worried about. You are in a safe environment here, one that tries to be nonjudgemental. You expressed your fears and had a safe place to do it in. That is a good thing. We all have fears, especially about those things we don't fully understand.
I am glad that you are comfortable enough to express your thoughts without fear of being ridiculed or shamed. I hope others feel as comfortable that they may express their own thoughts, fears, questions, etc.
We are here to support each other in our journey.
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Oh, thank you, Carol.....I've been worried about it since yesterday.
Thank you so much.
Susan McCord :-)
sleepycarol said:In my opinion Susan, your reaction was one that many probably have experienced. Should you have posted it on SleepGuide?
I don't think this is a question that you should be worried about. You are in a safe environment here, one that tries to be nonjudgemental. You expressed your fears and had a safe place to do it in. That is a good thing. We all have fears, especially about those things we don't fully understand.
I am glad that you are comfortable enough to express your thoughts without fear of being ridiculed or shamed. I hope others feel as comfortable that they may express their own thoughts, fears, questions, etc.
We are here to support each other in our journey.
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Permalink Reply by Brett Berry on
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Anyone know how I can get a shorter clip of that video for teaching purposes? It's a big file to slap into a PP slide.
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Permalink Reply by amott1973 on
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I know what you mean! It is a powerful thing to see, and I can only imagine how much it would have impacted the person watching the video of themselves or a loved one. I sent the link to my mom and I think it made a difference for her. She emailed me back that she would use her mask anyway. I'm going to visit her next weekend so we'll see how she's doing on it. She has apnea every bit as bad as the guy in the video, if not worse. I've sat and watched the clock while she stopped breathing, sometimes for well over a minute.
I think it's so wonderful for them to have put this video online. It has certainly made a difference for lots of people I'd say.
Brett, if you don't want to put in the entire video (which actually can be a copyright issue) you could just include the link there. As long as you have internet connection on the computer where you're presenting you can do it that way.
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