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My sleep apnea story.......
I've sat here mesmerized for almost 2 hours, reading page after page of discussions. While I could easily relate to much of what I read, I didn't really read a scenario quite like mine. Maybe I'm just weird, but here goes:
I was diagnosed with sleep apnea 2-1/2 years ago, but I believe I had sleep issues long, long before that. At that time I had a crazy job that was both mentally and physically exhausting. I got up at 4:30am, was on the road by 5 for an hour long commute, got to work at 6:00, went full blast for 10 hours, constantly solving conflicts and dealing with problems all day long, left work between 4-5 pm, my afternoon commute was an hour and a half long in rush hour traffic, so I got home around 6:30 pm, had to deal with dinner, kids, the house, life in general, got to bed around 11:00pm, had a horrible night's sleep, and started the whole process over the next day. I was always exhausted, would often wake up in the middle of the night thinking about my job, and yet suffered from insomnia. I started gaining weight, started looking old, it was real scary. I kept this pace up for several years. Then, a year before I was diagnosed, I had an older daughter murdered, as well as an unborn grandson. Suddenly my sleep issues became even worse. I could put it all out of my mind during the day at work, but the minute I tried to close my eyes and sleep, it all came rushing back. My husband was often out of town for weeks at a time, and when he was gone, I had even worse problems getting to sleep at night. Have I mentioned the insomnia yet? lol Yet on weekends, I could never sleep past 6:30 am, or so. I schemed, I plotted, I planned, I manipulated trying to catch up on sleep, but it never worked. If I sat still for a few minutes, I would fall asleep on the couch, but in bed, I would toss and turn for hours. I never went to the movies; I would sleep through them! Six months before I was diagnosed, I started having problems driving to work each morning. I had a 9 mile stretch of rural interstate that was hard to stay awake on. I would drive with all the windows down, and the radio on full blast, and still have to pull over and do jumping jacks beside the interstate. Once I got into the more populated areas, I could stay alert better, but that first nine mile was a nightmare. I was putting more and more weight on, yet constantly dieting. I was never obese, but I weighed more than was comfortable on my small frame.I had sores on my body that wouldn't heal for weeks. I started losing my temper alot, which isn't like me. I cried at the least little upset. A month before I was diagnosed, I started having trouble staying awake at work. In the afternoons, I couldn't get any work done at my computer, because I couldn't stay awake. It's not like I had a quite office; in fact it was very noisy with people coming and going constantly, yet I couldn't stay awake in it. Then I started having problems driving home; 50 miles one way is a long way to drive when you can't hardly stay awake.
I can remember sitting in the doctor's office telling her all this as she listened quitely, saying hardly nothing at all for the 10 minutes or so that I sat there, crying and babbling. Then she said, "I think you have sleep apnea", and I thought to myself...'yeah, and you're stupid and wasted 7 years of medical school'! Even when I went to my first sleep lab, I was convinced I didn't have sleep apnea. But I did. And I made some decisions to change my life. Not because I was thinking lucidly, but because I was just to exhausted to deal with it anymore. A week after I got my CPAP, I finished working out my notice and went on the road with my husband. I walked away from 45 grand a year, and federal employee benefits. Did it all get better right away? Absolutley not!! It was six months before I went back to my sleep disorder doctor. I was still crying about everything, still couldn't lose weight. At that time he told me we had only fixed the apnea problem. Apparently, my brain didn't go into REM sleep the way it should. I for got to mention earlier; I quit breathing an average of 12 times per hour. Well apparently, most of my apneas were during my REM sleep, because at that time I quit breathing an average of 40 times per hour. No wonder I was exhausted!!! He put me on sleeping pills which I took for 6 months, but once my prescription ran out, I had to stop. When I left my job, I also lost my health insurance. So I haven't been back to my doctor since. So how is my sleep apnea now? It's still there, but I use my CPAP every night. I also fight with it every night, but I couldn't imagine not using it. Do I have alot of excess energy now? No- but I have so much more than I did! I've lost 45 pounds, but more importantly, I look like my old self again! I'd like to lose another 20 pounds, and I'm sure I will. I don't look old anymore, in fact most people say I look about 10 years younger than I am. Every now and then I come across a picture of me back in my sleep deprivation stage, and I'm just amazed!!! I've come to realize, I have a sleep disorder, and it's up to me to figure out how to function with it. I still have insomnia,so I take OCT sleep pills. When I don't take them, I can't sleep. I just went back to work (finally!) and although I'm in the same type of work, I drive about 30 miles a day, instead of 100. Most importantly, I don't have to wake up with the roosters, and run out the door in a rush. I can get up and take my time getting ready. I have come to discover that that is important with my kind of sleep issues. Soon, I'll have insurance again, and I'll find another sleep doctor. Meanwhile my life is controllable again. I'll probably never be perky in the morning, but some people simply aren't. Maybe I'm one of them! :) Yes, I still have sleep issues, but I'm alive, and I no longer cry about every upset, and I'm no where near as bad as I was 2-3 years ago, I just had to make some life altering changes in my life. And while I didn't get the 'miracle' difference I had hoped for, I can handle my life this way!
I was diagnosed with sleep apnea 2-1/2 years ago, but I believe I had sleep issues long, long before that. At that time I had a crazy job that was both mentally and physically exhausting. I got up at 4:30am, was on the road by 5 for an hour long commute, got to work at 6:00, went full blast for 10 hours, constantly solving conflicts and dealing with problems all day long, left work between 4-5 pm, my afternoon commute was an hour and a half long in rush hour traffic, so I got home around 6:30 pm, had to deal with dinner, kids, the house, life in general, got to bed around 11:00pm, had a horrible night's sleep, and started the whole process over the next day. I was always exhausted, would often wake up in the middle of the night thinking about my job, and yet suffered from insomnia. I started gaining weight, started looking old, it was real scary. I kept this pace up for several years. Then, a year before I was diagnosed, I had an older daughter murdered, as well as an unborn grandson. Suddenly my sleep issues became even worse. I could put it all out of my mind during the day at work, but the minute I tried to close my eyes and sleep, it all came rushing back. My husband was often out of town for weeks at a time, and when he was gone, I had even worse problems getting to sleep at night. Have I mentioned the insomnia yet? lol Yet on weekends, I could never sleep past 6:30 am, or so. I schemed, I plotted, I planned, I manipulated trying to catch up on sleep, but it never worked. If I sat still for a few minutes, I would fall asleep on the couch, but in bed, I would toss and turn for hours. I never went to the movies; I would sleep through them! Six months before I was diagnosed, I started having problems driving to work each morning. I had a 9 mile stretch of rural interstate that was hard to stay awake on. I would drive with all the windows down, and the radio on full blast, and still have to pull over and do jumping jacks beside the interstate. Once I got into the more populated areas, I could stay alert better, but that first nine mile was a nightmare. I was putting more and more weight on, yet constantly dieting. I was never obese, but I weighed more than was comfortable on my small frame.I had sores on my body that wouldn't heal for weeks. I started losing my temper alot, which isn't like me. I cried at the least little upset. A month before I was diagnosed, I started having trouble staying awake at work. In the afternoons, I couldn't get any work done at my computer, because I couldn't stay awake. It's not like I had a quite office; in fact it was very noisy with people coming and going constantly, yet I couldn't stay awake in it. Then I started having problems driving home; 50 miles one way is a long way to drive when you can't hardly stay awake.
I can remember sitting in the doctor's office telling her all this as she listened quitely, saying hardly nothing at all for the 10 minutes or so that I sat there, crying and babbling. Then she said, "I think you have sleep apnea", and I thought to myself...'yeah, and you're stupid and wasted 7 years of medical school'! Even when I went to my first sleep lab, I was convinced I didn't have sleep apnea. But I did. And I made some decisions to change my life. Not because I was thinking lucidly, but because I was just to exhausted to deal with it anymore. A week after I got my CPAP, I finished working out my notice and went on the road with my husband. I walked away from 45 grand a year, and federal employee benefits. Did it all get better right away? Absolutley not!! It was six months before I went back to my sleep disorder doctor. I was still crying about everything, still couldn't lose weight. At that time he told me we had only fixed the apnea problem. Apparently, my brain didn't go into REM sleep the way it should. I for got to mention earlier; I quit breathing an average of 12 times per hour. Well apparently, most of my apneas were during my REM sleep, because at that time I quit breathing an average of 40 times per hour. No wonder I was exhausted!!! He put me on sleeping pills which I took for 6 months, but once my prescription ran out, I had to stop. When I left my job, I also lost my health insurance. So I haven't been back to my doctor since. So how is my sleep apnea now? It's still there, but I use my CPAP every night. I also fight with it every night, but I couldn't imagine not using it. Do I have alot of excess energy now? No- but I have so much more than I did! I've lost 45 pounds, but more importantly, I look like my old self again! I'd like to lose another 20 pounds, and I'm sure I will. I don't look old anymore, in fact most people say I look about 10 years younger than I am. Every now and then I come across a picture of me back in my sleep deprivation stage, and I'm just amazed!!! I've come to realize, I have a sleep disorder, and it's up to me to figure out how to function with it. I still have insomnia,so I take OCT sleep pills. When I don't take them, I can't sleep. I just went back to work (finally!) and although I'm in the same type of work, I drive about 30 miles a day, instead of 100. Most importantly, I don't have to wake up with the roosters, and run out the door in a rush. I can get up and take my time getting ready. I have come to discover that that is important with my kind of sleep issues. Soon, I'll have insurance again, and I'll find another sleep doctor. Meanwhile my life is controllable again. I'll probably never be perky in the morning, but some people simply aren't. Maybe I'm one of them! :) Yes, I still have sleep issues, but I'm alive, and I no longer cry about every upset, and I'm no where near as bad as I was 2-3 years ago, I just had to make some life altering changes in my life. And while I didn't get the 'miracle' difference I had hoped for, I can handle my life this way!
Views: 72
Replies to This Discussion
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Permalink Reply by Judy on
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Ahhh, but you may find when you get insurance again and have another sleep study that there IS more that can be done for you
And with new insurance and a new sleep study you can get a new CPAP and most likely a BETTER CPAP as I'm willing to bet you were most likely supplied w/a bare bone compliance data only capable CPAP. This time around you will know enough to INSIST on ONLY a fully data capable CPAP!!! And MAYBE we'll even be able to convince your local DME supplier to provide you w/a fully data capable APAP!
But for now, check the top of your current CPAP and/or your CPAP's Users Guide to tell us just what brand and model CPAP you currently have. If you know the name of your mask that might help too.
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Permalink Reply by susan mccord on
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Hi Neilia!! Welcome to SleepGuide!! We're so happy to have you join us, along with a lot of other apnea patients and professionals who are coming on board every day. You're gonna be VERY happy you decided on SleepGuide!! You'll never meet a more knowledgeable and compassionate group of folks. From reading your story, I know you'll not only benefit from SG, but you also have a lot to offer US in terms of self-awareness and courage.
I'm so very sorry about your daughter and your little grandson. I have 2 grown sons and 4 grandchildren, and I know that no one should ever have to go through such agony as you have, Neilia. My goodness, your daughter never got to look into her baby's eyes, and that little boy never had a chance to move into his earthly life......with that, and all the other stress you describe, plus apnea, it would appear to me that you're pretty much a warrior. We LIKE warriors here!!! As well as non-warrior folks. (I certainly wasn't one when I first came onto SleepGuide. I was basically a mess). It takes all kinds of people to make up a support network, and that's exactly what we have--all kinds......all precious, each in his/her own way..........
I'm going to send you a Friend request--I hope you'll accept. And again, thanks for joining us.
Susan McCord :-)
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susan mccord said:Hi Neilia!! Welcome to SleepGuide!! We're so happy to have you join us, along with a lot of other apnea patients and professionals who are coming on board every day. You're gonna be VERY happy you decided on SleepGuide!! You'll never meet a more knowledgeable and compassionate group of folks. From reading your story, I know you'll not only benefit from SG, but you also have a lot to offer US in terms of self-awareness and courage.
I'm so very sorry about your daughter and your little grandson. I have 2 grown sons and 4 grandchildren, and I know that no one should ever have to go through such agony as you have, Neilia. My goodness, your daughter never got to look into her baby's eyes, and that little boy never had a chance to move into his earthly life......with that, and all the other stress you describe, plus apnea, it would appear to me that you're pretty much a warrior. We LIKE warriors here!!! As well as non-warrior folks. (I certainly wasn't one when I first came onto SleepGuide. I was basically a mess). It takes all kinds of people to make up a support network, and that's exactly what we have--all kinds......all precious, each in his/her own way..........
I'm going to send you a Friend request--I hope you'll accept. And again, thanks for joining us.
Susan McCord :-)
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susan mccord said:Hi Neilia!! Welcome to SleepGuide!! We're so happy to have you join us, along with a lot of other apnea patients and professionals who are coming on board every day. You're gonna be VERY happy you decided on SleepGuide!! You'll never meet a more knowledgeable and compassionate group of folks. From reading your story, I know you'll not only benefit from SG, but you also have a lot to offer US in terms of self-awareness and courage.
I'm so very sorry about your daughter and your little grandson. I have 2 grown sons and 4 grandchildren, and I know that no one should ever have to go through such agony as you have, Neilia. My goodness, your daughter never got to look into her baby's eyes, and that little boy never had a chance to move into his earthly life......with that, and all the other stress you describe, plus apnea, it would appear to me that you're pretty much a warrior. We LIKE warriors here!!! As well as non-warrior folks. (I certainly wasn't one when I first came onto SleepGuide. I was basically a mess). It takes all kinds of people to make up a support network, and that's exactly what we have--all kinds......all precious, each in his/her own way..........
I'm going to send you a Friend request--I hope you'll accept. And again, thanks for joining us.
Susan McCord :-)
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Thank you! Although this 'warrior' was a real mess a few years ago, too!
I'll be happry to accept your friend request.
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Sure thing: I have a ResMed S8 Compact HumidAire.....I can't tell you the EXACT model number of my mask but it's the ResMed Activia Nasel---does that sound right? lol I tried the nose mask at first, but I got claustrophobic, and they switched my to the nasal apparatus.
Judy said:Ahhh, but you may find when you get insurance again and have another sleep study that there IS more that can be done for you
And with new insurance and a new sleep study you can get a new CPAP and most likely a BETTER CPAP as I'm willing to bet you were most likely supplied w/a bare bone compliance data only capable CPAP. This time around you will know enough to INSIST on ONLY a fully data capable CPAP!!! And MAYBE we'll even be able to convince your local DME supplier to provide you w/a fully data capable APAP!
But for now, check the top of your current CPAP and/or your CPAP's Users Guide to tell us just what brand and model CPAP you currently have. If you know the name of your mask that might help too.
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Permalink Reply by RockRpsgt on
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Welcome to Sleepguide Neila. That is a great story. So much tragedy and determination. I am so glad you are doing better. I too will never be a morning person. My oldest daughter tells her friends not to talk to me until I have been up for at least an hour.
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Thanks for the welcome!
Rock Hinkle said:Welcome to Sleepguide Neila. That is a great story. So much tragedy and determination. I am so glad you are doing better. I too will never be a morning person. My oldest daughter tells her friends not to talk to me until I have been up for at least an hour.
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Neilia, that Compact can provide excellent therapy. BUT it is NOT a fully data capable CPAP. When you have insurance again and meet w/the new sleep doctor be prepared, KNOW which CPAPs are fully data capable and INSIST that you be provided w/a fully data capable xPAP. If you were to INSIST on the Resmed S8 Elite w/EPR (if any are still available) you would NOT need a new humidifier. If you were to INSIST on the Resmed S8 Elite II w/EPR you may well need a new humidifier, the Humidaire 4i. There is a converter kit to upgrade the 3i to the 4i capacity but I don't know that the 3i w/the converter kit would fit w/the Elite II. That is something you will want to check out carefully. Keep the Compact as a backup/travel device. And don't let some unscrupulous local DME supplier try to pawn off a Resmed S8 Escape or Escape II w/EPR on you as fully data capable because it has a data card. Just because a CPAP has a data card does NOT make it fully data capable. I lost my oldest daughter to a drunk driver. I understand some of the pain you have had to deal with. But life goes on. I remember and concentrate on the good times we had.
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Thanks for all the information. I will definately use this when my insurance kicks in.
Sorry about your daughter.....
Judy said:Neilia, that Compact can provide excellent therapy. BUT it is NOT a fully data capable CPAP. When you have insurance again and meet w/the new sleep doctor be prepared, KNOW which CPAPs are fully data capable and INSIST that you be provided w/a fully data capable xPAP. If you were to INSIST on the Resmed S8 Elite w/EPR (if any are still available) you would NOT need a new humidifier. If you were to INSIST on the Resmed S8 Elite II w/EPR you may well need a new humidifier, the Humidaire 4i. There is a converter kit to upgrade the 3i to the 4i capacity but I don't know that the 3i w/the converter kit would fit w/the Elite II. That is something you will want to check out carefully. Keep the Compact as a backup/travel device. And don't let some unscrupulous local DME supplier try to pawn off a Resmed S8 Escape or Escape II w/EPR on you as fully data capable because it has a data card. Just because a CPAP has a data card does NOT make it fully data capable. I lost my oldest daughter to a drunk driver. I understand some of the pain you have had to deal with. But life goes on. I remember and concentrate on the good times we had.
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Thank you, Neilia.
I so well remember our family's school days before I started working full-time. I'd wake up in the morning begrudgingly. Slither down the stairs to the refrigerator for a Coke Classic, then slither up on to the snack bar stool and light a cigarette. No lights on! And DO NOT even breathe the same air I breathe!! Take your shower, brush your teeth, get dressed and THEN come down to the kitchen for breakfast - but NOT until then!! No. I was NEVER a .... urgh! .... MORNING person! I'm still not. I'm not "human" until 8:30 AM! I HATE going to bed before midnight and I HATE waking up before 8:30 AM. Its just that the rest of the world won't cooperate w/"my" hours! The dirty birds.
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Permalink Reply by Lala on
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Hi Neilia,
Pretty name, by the way. Although I do not know what its like to lose a daughter and grandson, I do know what its like to lose a best friend. My best friend of 13 years committed suicide by stabbing himself over 30 times. It was the worst experience of my life. I blamed myself for a long time, not seeing the signs, and the worst part about the whole thing is he called me the night before several times, but I was out with my mom and sisters celebrating my mom's birthday. I got home late that night so I did not return his call. I was going to call him in the morning, but it was too late. I was completely devastated. Guilt consumed me. My whole life spun out of control. I believe that is when I started to give into the exhaustion I felt all along. I just didnt have the energy, the get up and go, after that experience. I'm not saying his suicide caused my exhaustion, but it certainly took its toll on me and I could no longer fight it. It must have been horribly painful for you to lose a daughter. I'm so sorry you had to go through such a tragedy. Peace be with you and God bless.
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