Kquilts,
They've all said it so well.... and many of us - me included - have been where you are.
I'll add this:
Don't think of it as a sleep disorder. Think of it as a breathing disorder - or as someone said: We have trouble sleeping and breathing at the same time. What we have is SDB - Sleep Disturbed Breathing.
Each night, many time an hour, you a being literally choked, starved for oxygen. And your brain does it's best to fix this - it wakes you up. Your body literally fights for breath - each night, many times an hour. The person who gets up in the morning may not remember this, but it's there, in you body, in your unconcious brain - the knowledge that instead of sleeping, you've been fighting against choking.
You are now being given a chance to sleep and breath at the same time - it's a blessing.
Rested Gal once pointed out that had anyone seen one of their dear ones going through this choking an rebreathing process while they were awake, they would have called an ambulance immediately.
You want to live, you want to breathe - technology has given you a chance to do that.
And technology has give us this amazing way of helping each other - most of us came here as troubled and upset as you. Many of us remain because of the help we recieved and the wish to help others.
And many of us remain because this is a group of amazing, knowledgeable, supportive, and fun (yes, fun) people to be with.
Welcome.
O.
Getting prepared
_________________
| Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear |
| Additional Comments: Machine: Resmed AirSense10 for Her with Climateline heated hose ; alternating masks. |
And now here is my secret, a very simple secret; it is only with the heart that one can see rightly, what is essential is invisible to the eye.
Antoine de Saint-Exupery
Good advice is compromised by missing data
Forum member Dog Slobber Nov. 2023
Antoine de Saint-Exupery
Good advice is compromised by missing data
Forum member Dog Slobber Nov. 2023
-
ProfessorSleep
- Posts: 338
- Joined: Sat Sep 10, 2005 7:42 pm
- Location: Wisconsin
Getting Prepared
I am compelled to respond since I just recently started treatment myself and could relate to every word you said. Add to it the reflections on aging, stigma, midlife-crisis, etc. that went along with my finally accepting and dealing with my OSA. The guy next door got a Porsche parked in front of his house on his 50th birthday - I get a DME provider van bringing me a CPAP! It isn't fair!
No, it isn't fair. Actually, we're the lucky ones. We stood up to our conditions and got help. Do we wish we didn't have to? Of course. But stuff happens. I have learned in a brief time to become an advocate for people with sleep disorders, to educate others, to laugh at their misunderstanding when they ignorantly laugh at me. It is amazing how much people don't know about OSA. Even health care providers (an area I know too well) often are poorly informed. I didn't do the tears part - not my style - but I got really angry about it. In retrospect, that was equally foolish of me.
After only a week I have more energy, am far more alert, am more present and there for my family and my friends, and basically got my life back after hitting bottom with the OSA. This is the way up, not a way down! hang in there. You definitely are not alone. And those around you may need a little educating, but ultimately they should be happy for you that you got the treatment you needed and are feeling better - for you and for them!
No, it isn't fair. Actually, we're the lucky ones. We stood up to our conditions and got help. Do we wish we didn't have to? Of course. But stuff happens. I have learned in a brief time to become an advocate for people with sleep disorders, to educate others, to laugh at their misunderstanding when they ignorantly laugh at me. It is amazing how much people don't know about OSA. Even health care providers (an area I know too well) often are poorly informed. I didn't do the tears part - not my style - but I got really angry about it. In retrospect, that was equally foolish of me.
After only a week I have more energy, am far more alert, am more present and there for my family and my friends, and basically got my life back after hitting bottom with the OSA. This is the way up, not a way down! hang in there. You definitely are not alone. And those around you may need a little educating, but ultimately they should be happy for you that you got the treatment you needed and are feeling better - for you and for them!
-
Sleepless on LI
- Posts: 3997
- Joined: Mon May 30, 2005 6:46 pm
- Location: Long Island, New York
-
ProfessorSleep
- Posts: 338
- Joined: Sat Sep 10, 2005 7:42 pm
- Location: Wisconsin
Gee, thanks. Can you tell I'm rather passionate about all this? Maybe it's my way of dealing with how disappointed I am in myself for putting it off so long? If I had only known what a toll it was taking! But I thank all of you for helping me have the courage!Sleepless on LI wrote:Your name is very fitting of you, "Professor." Very smart and insightful post. Great reading.
-
rested gal
- Posts: 12881
- Joined: Thu Sep 09, 2004 10:14 pm
- Location: Tennessee
Absolutely wonderful post, Professor! As was everyone else's message of encouragement.
I know it sounds crazy, but every person who is diagnosed with OSA should CHEER about it! And feel sorry for the many who are dragging themselves through life having no idea why they are so worn out all the time!
Using a machine and mask each night lets me get up the next morning and go merrily on my way, knowing I haven't been damaging my heart and brain all night.
kquilts, in this topic: Advice please! another new user (Mary A) expressed the same feeling of dismay you're having. In that thread capt made a good observation:
"It is funny how people can put on makeup, like a face mask preparation, to keep their skin looking as young as possible. We use tons of chemicals, rollers, dryers and curling irons to get their hair to look just right or take the grey out. I hope that you can look at all the funny things we do and put using your cpap equipment into that kind of perspective."
Reminded me of what a wise woman (Rachel E) on another message board once said...
She said any time she was throwing herself a pity party, she would make herself think of it as a nightly beauty treatment. In many ways, it really is just that - making the brain, heart, and every organ of the body more "beautiful".
I know it sounds crazy, but every person who is diagnosed with OSA should CHEER about it! And feel sorry for the many who are dragging themselves through life having no idea why they are so worn out all the time!
Using a machine and mask each night lets me get up the next morning and go merrily on my way, knowing I haven't been damaging my heart and brain all night.
kquilts, in this topic: Advice please! another new user (Mary A) expressed the same feeling of dismay you're having. In that thread capt made a good observation:
"It is funny how people can put on makeup, like a face mask preparation, to keep their skin looking as young as possible. We use tons of chemicals, rollers, dryers and curling irons to get their hair to look just right or take the grey out. I hope that you can look at all the funny things we do and put using your cpap equipment into that kind of perspective."
Reminded me of what a wise woman (Rachel E) on another message board once said...
She said any time she was throwing herself a pity party, she would make herself think of it as a nightly beauty treatment. In many ways, it really is just that - making the brain, heart, and every organ of the body more "beautiful".
-
rock and roll
- Posts: 1222
- Joined: Mon Nov 01, 2004 7:30 pm
- Location: Texas
-
Jan in Colo.
Kquilts--
Not much to add to what others have said, but....I don't have grandchildren yet but I do have two dogs, one a very intelligent standard poodle. I showed her the mask, let her check it out, then had her watch me put in on and take it off several times. She's been fine ever since. If you have young grandchildren that approach might work for them.
Older grandchildren might act like my three teenagers do when they wake me up to tell me they are home for the night. The first time my middle son saw me, he laughed and said Hi, oh alien mom of mine! Just letting you know I'm home!. My 14 year old prefers not to see me in it, but when I got a new mask in the mail, he commented that he thought it looked a lot more comfortable---indicating to me that he's been in my bedroom looking at my equipment when I wasn't aware. He's a sneaky one, lol. Pretty soon he'll be comfortable enough to come in and talk to me when I have the mask on, it just takes him a bit longer. My 20 year old is just glad to see me feeling better....So the whole situation freaked them out just a tad in the beginning but now it is no big deal.
My husband had a hard time with it, mainly because he feels guilty that he let me have this for so long and didn't help me with it (He's an ENT doc). I have quite severe apnea....I've found him several times just standing by my bed just looking at me with a worried expression on his face. We've re-oriented our sex life a bit....with a little more planning so I'm not "hooked up" when the situation turns romantic. But he's actually glad--I'm much quieter at night, so he gets better sleep. I'm feeling better so I have more energy to do hikes and things with him. It's all good.
Re: fibromyalgia. You don't say how old you are. I'm 52, just got my bloodwork done in April which said I had gone through the pre-menopausal stuff already and was in full-blown menopause. Meaning no hormones. I also had tons of aches and pains in my entire body all the damn time. I took 4 ibuprofen every time I played tennis because my legs hurt, my knees hurt, my feet hurt, hips hurt, elbows hurt, wrists hurt (have I forgotten anything? lol). But after a few weeks of hormone therapy, guess what? Haven't taken pain killers since. My knees are the only thing that still hurt and that's kind of a normal pain at this age. I can deal with it. The pain has gotten even better with the CPAP. My oxygen levels were falling really low when I slept...that affects your muscles, your brain, you name it. Well, just mentioning this because it's a possibility you will improve on CPAP also.
I love being diagnosed with sleep apnea. Instead of suffering all these strange little symptoms all the time, and being exhausted all the time, I now know the enemy! And I can fight back! I can use the CPAP and feel great! I can research, get to know all about what is going on and regain POWER over my life. I just wish I'd had this 20 years ago...30 years ago...I swear I've had it to some degree for that long! And that is ridiculous when there is an easy treatment to be had!
And you would be amazed at how many people have CPAP machines in their bedrooms. I knew of five of our friends before my diagnosis--now I'm finding out about so many others! It's really not all that weird of a thing at all.....
So hang in there and try to think of it with a more positive attitude...this will save your life and make you feel better. How can you reject that?
Jan in Colo.
Not much to add to what others have said, but....I don't have grandchildren yet but I do have two dogs, one a very intelligent standard poodle. I showed her the mask, let her check it out, then had her watch me put in on and take it off several times. She's been fine ever since. If you have young grandchildren that approach might work for them.
Older grandchildren might act like my three teenagers do when they wake me up to tell me they are home for the night. The first time my middle son saw me, he laughed and said Hi, oh alien mom of mine! Just letting you know I'm home!. My 14 year old prefers not to see me in it, but when I got a new mask in the mail, he commented that he thought it looked a lot more comfortable---indicating to me that he's been in my bedroom looking at my equipment when I wasn't aware. He's a sneaky one, lol. Pretty soon he'll be comfortable enough to come in and talk to me when I have the mask on, it just takes him a bit longer. My 20 year old is just glad to see me feeling better....So the whole situation freaked them out just a tad in the beginning but now it is no big deal.
My husband had a hard time with it, mainly because he feels guilty that he let me have this for so long and didn't help me with it (He's an ENT doc). I have quite severe apnea....I've found him several times just standing by my bed just looking at me with a worried expression on his face. We've re-oriented our sex life a bit....with a little more planning so I'm not "hooked up" when the situation turns romantic. But he's actually glad--I'm much quieter at night, so he gets better sleep. I'm feeling better so I have more energy to do hikes and things with him. It's all good.
Re: fibromyalgia. You don't say how old you are. I'm 52, just got my bloodwork done in April which said I had gone through the pre-menopausal stuff already and was in full-blown menopause. Meaning no hormones. I also had tons of aches and pains in my entire body all the damn time. I took 4 ibuprofen every time I played tennis because my legs hurt, my knees hurt, my feet hurt, hips hurt, elbows hurt, wrists hurt (have I forgotten anything? lol). But after a few weeks of hormone therapy, guess what? Haven't taken pain killers since. My knees are the only thing that still hurt and that's kind of a normal pain at this age. I can deal with it. The pain has gotten even better with the CPAP. My oxygen levels were falling really low when I slept...that affects your muscles, your brain, you name it. Well, just mentioning this because it's a possibility you will improve on CPAP also.
I love being diagnosed with sleep apnea. Instead of suffering all these strange little symptoms all the time, and being exhausted all the time, I now know the enemy! And I can fight back! I can use the CPAP and feel great! I can research, get to know all about what is going on and regain POWER over my life. I just wish I'd had this 20 years ago...30 years ago...I swear I've had it to some degree for that long! And that is ridiculous when there is an easy treatment to be had!
And you would be amazed at how many people have CPAP machines in their bedrooms. I knew of five of our friends before my diagnosis--now I'm finding out about so many others! It's really not all that weird of a thing at all.....
So hang in there and try to think of it with a more positive attitude...this will save your life and make you feel better. How can you reject that?
Jan in Colo.
-
Sleepless on LI
- Posts: 3997
- Joined: Mon May 30, 2005 6:46 pm
- Location: Long Island, New York
kquilts,
After reading Jan's post, she reminded me of when my kids (22, 19 and 12) saw me in my mask when I brought it home. They were hysterical; laughing, that is. It was a very fun experience. They started saying things like I look like Darth Vader, and let them get the digital camera, etc., not to be mean or anything, but just joking around, which was fine by me. They were so hysterical, it made me laugh so hard, tears came out of my eyes. I made them go get me the hand mirror and I couldn't stop laughing after that, either. It's all in the way you handle it. If I was too serious, I could have taken offense to it. But I only look like Darth when the mask is on (my first mask) and it's not what I look like normally, thank God! They were all, too, very happy they were now going to get their old mom back, the one who used to do things and had energy. AND THEY DID!
So don't sweat the small stuff. The kids handle it in their own way, probably better than the adults.
After reading Jan's post, she reminded me of when my kids (22, 19 and 12) saw me in my mask when I brought it home. They were hysterical; laughing, that is. It was a very fun experience. They started saying things like I look like Darth Vader, and let them get the digital camera, etc., not to be mean or anything, but just joking around, which was fine by me. They were so hysterical, it made me laugh so hard, tears came out of my eyes. I made them go get me the hand mirror and I couldn't stop laughing after that, either. It's all in the way you handle it. If I was too serious, I could have taken offense to it. But I only look like Darth when the mask is on (my first mask) and it's not what I look like normally, thank God! They were all, too, very happy they were now going to get their old mom back, the one who used to do things and had energy. AND THEY DID!
So don't sweat the small stuff. The kids handle it in their own way, probably better than the adults.
L o R i
Reading this thread and another from over the weekend unblocked a bunch of memories from a few years ago when I seriously injured my right eye and had to start wearing glasses for the first time. I had been very proud (oops!) of my better-than-normal 20/15 vision, and was angry, embarresed and stressed at having to start wearing glasses. Not dissimilar from the feelings some of you are relating at having to start using an xPAP.
But I got over it.
It was easy to get over having to wear glasses, as so many people do.
What we don't realize is that many more people than we're aware of use xPAP equipment. I've discovered that I know more people than I'd ever imagine who have this condition and are already being successfully treated. And I've now influenced 2 friends and a relative to get checked because they have all the symptoms.
You aren't alone. And just like my issues with glasses, you can get beyond this to have a much better, longer and healthier life.
But I got over it.
It was easy to get over having to wear glasses, as so many people do.
What we don't realize is that many more people than we're aware of use xPAP equipment. I've discovered that I know more people than I'd ever imagine who have this condition and are already being successfully treated. And I've now influenced 2 friends and a relative to get checked because they have all the symptoms.
You aren't alone. And just like my issues with glasses, you can get beyond this to have a much better, longer and healthier life.
The CPAPer formerly known as WAFlowers