Getting prepared

[kquilts]

Hello,
I guess I'm a newbie!?
I have first been diagnosed with fibromyalgia ,which in turn, a sleep evaluation was prescribed.
I've had my first overnite and day time studies. The consult to inform me the next step is a CPAP, no other options. I'm having an emotional time! I did not ask for this, nor do I want it, but the doctor asked me, please try it for 30 days! I have had issues for several years not having a clue I had a sleep disorder. With a little research I can now understand what this is all about and do recognize all the symptoms of fibromyalgia and the added topping of sleep apnea.
I need an "HELP RX "for eliminating fears and anxiety, claustrophobic worries. I'll get my equipment at the end of the month. But my fears and tears are wanting me to cancel and stop the life sentence of mask on face for the rest of my life. I do not want sleep beside my husband with my new gear, nor have my grandchildren walk in my room and scare the living daylights out of them!
Overwhelmed & freaking out! [/b]

[Grabraham]

First I think the grandkids will not be scared... the will beg to "try it"

For me the biggest step is acceptance. If you are able to actually accept the fact that it is TREATMENT and not punishment you will be setting yourself up for success rather than expecting torture and pain.

In my case (and many others) the benefit of treatment will make the inconvenience of strapping a mask on at night seem like a minor hassle. I would bet a donut that I am not the only one on this board that actually looks forward to putting the mask on and closing their eyes for some restorative sleep.

[Fatigue Fighter]

For me the biggest step is acceptance. If you are able to actually accept the fact that it is TREATMENT and not punishment you will be setting yourself up for success rather than expecting torture and pain.

This is so true!

I do not want sleep beside my husband with my new gear

Yes...I had these same fears but I got over it pretty quick. The one thing I caution you about though......if you find a need to put tape over your mouth as so many here have suggested due to air leakage or mouth breathing, then for sure....don't let your husband know it. I made that mistake and he joked about it "being about time"! (to tape my mouth shut)!

Welcome to the world of treatment for sleep apnea. It does take some getting used to but eventually it should feel like second nature to sleep with the mask on. You found the right place for help adjusting to it too!
These people are so helpful....with the added touch of humor to make things easier.

FF

[neversleeps]

.... But my fears and tears are wanting me to cancel and stop the life sentence of mask on face for the rest of my life. I do not want sleep beside my husband with my new gear, nor have my grandchildren walk in my room and scare the living daylights out of them...

Here is the hardline approach to your dilemma:

Life sentence of mask on face, or death sentence from stroke, heart attack, high blood pressure, etc.

Sleep beside your husband with your new gear, or don't be there at all to sleep beside him.

Have your grandchildren see you in your mask, or have your grandchildren trying to remember what you looked like.

OSA is linked to many serious illnesses and diseases including (but not limited to) diabetes and many cardiovascular problems. Click on this link:Cardiovascular Disease and Sleep Apnea

You would not want your pride or fear to keep you from living a long healthy life, and you wouldn't want to deprive your husband or grandchildren of being with their wife and grandmother for many years to come.

(By the way, fibromyalgia symptoms have been known to decrease dramatically with CPAP use.)

All that being said, there are alternatives to CPAP therapy including dental devices and surgery. Click on this link:
LINKS to surgery, turbinates, Pillar, TAP experiences

Above all, try to stay positive and keep in mind how lucky you are to have been correctly diagnosed, and that there IS a proven treatment. Whether or not you choose to use it is entirely up to you.

[Sleepless on LI]

kquilts,
You put tears in my eyes reading your post. Please don't let this get you down. Try to look at it like a blessing they discovered this. Do you realize all the health issues you will be spared now that they have diagnosed you? So many poor people out there are suffering from conditions such as unexplained high blood pressure, migraine headaches and cardiovascular problems who have OSA and it hasn't been properly identified. So they will forever take medication while the root of their problems goes undiagnosed.

What you are feeling I think 99% of us felt at some point or another. At first I was thrilled because I had been vindicated for my complaints of exhaustion and fatigue, and it wasn't just laziness that I didn't want to do anything if I wasn't working. When they told me there was a reason for that, AND my unexplained high BP and migraines every morning, I was so relieved that now I would get help and maybe my life back.

Then one night, when I was just about to strap up for the evening, it hit me. Why did I have to be one of the ones afflicted with this? Why me? Why do I have to wear this headgear and have this hose attaching me to this machine every night so that I can sleep for the rest of my life? Yes, I cried. I felt totally cheated. It just wasn't fair. But this also came at a time when I was SOOOO tired and fatigued that I really had trouble dealing with all of it. Plus, I knew nothing about it and didn't know how I was going to find out.

Then a miracle happened and I found this site. Here all my questions were being answered. Here I found other people who not only had been through what I was now embarking on, but totally understood how I felt and related to the things I was feeling. Not only did I find a source of knowledge and information, but compassionate, wonderful people on whom I could lean for support and/or a place where I could just vent if need be.

You have been doubly blessed. You have been diagnosed and will soon be feeling as incredibly as I do now, three months into my treatment, AND you have found this site. Try to hang on to the positive right now. It is that attitude, that you are strong and will succeed, that can get you through the darkness you are feeling right now.

We've been there. We know how you're feelng. We're here for you. Post as often as you like. And PLEASE let us know when that wonderful moment comes and you start to feel the benefits from what you think is a nightmare right now, but what is really a blessing in disguise.

[rock and roll]

Well said NeverSleeps,


It is NOT A LIFE SENTENCE!


IT IS RELIEF!


IT IS FEELING BETTER!

THINK OF IT AS A REWARD FOR BOTH YOU AND YOUR HUSBAND!

Sorry to yell but wanted to get your attention. Your marriage,life and health will improve. Don't look at it as punishment. All of us have not only improved our lives with it, we have mad it a hobby and have made online friends because of it. Soon, you will be joining us discussing merits of different masks and machines and various techniques. Be glad you live now that cpap is available and make the best of it. And yes, you will find yourself looking forward to it at night because you knowit will make you feel better the next day.

Good Luck and welcome to the club

[Sleepless on LI]

Well said NeverSleeps,

I like Neversleeps and she usually does say it very well, but did you mean me ???

[neversleeps]

Here's the softer, gentler approach to your dilemma:

I felt exactly the same way. I anticipated I'd never get used to it and that wearing a mask would suffocate me. I didn't want anyone to see me in my gear, ever. Never, ever, ever. I even started to reason with myself that OSA wasn't that big a deal, and maybe I wouldn't even bother with the CPAP therapy. When I researched OSA's link to so many life-threatening illnesses, I changed my mind and I'm so glad I did!!!

I use my cpap machine/mask every night. After the initial adjustment period (which is the hardest part about this whole thing), I felt better and better. Now if I even take a nap without it, I feel crummy. You will be amazed; truly amazed at how good and rested and energetic and happy you can feel!

I think you need to give it more than 30 days to try it out. Give it 60 and if you're still not convinced you should stick with it, then give it just 60 more. After all, you've had years of lousy sleeping (whether you knew it or not) and a few months of restorative sleep will be a wonderful gift to your mind, body and spirit!!!

[rock and roll]

Nope, we must have been writing at the same time and you beatg me to the send button. I never went throught the feelings you did so I can't relate. I was so desperate for relief that I was overjoyed when told I qualified for the treatment. I sought it out after my own research. I took right to it (after finding the right mask, the Activa) and have never looked back. My only complaint other than price and fighting DME's is I don't like lugging it around, having to break it down, take the humidifier apart, dry it, and pack it, then the next hotel, put it together and repeat.

[cat-a-tonic]

kquilts - I was diagnosed with Fibromyalgia 15 years ago. I was just diagnosed with sleep apnea last month and have been using my CPAP machine for 10 days so far. I have NO problem sleeping with my mask and machine. It took a few days to get used to it, and for some it takes longer. But the trick is to use it every day, and if all you can handle at first is a few hours a night, then that is better than no hours a night. This is a life sentence which is a heck of a lot better than a DEATH sentence! You can e-mail me off-line or PM any time, if I can help you out! Be thankful that this health issue was diagnosed now and not later. By the way - I am sure your husband will sleep a lot better at night knowing that you are breathing all night. He'd probably sleep a lot less if he were watching over you just in case you stopped breathing! Sweetie - I know how depressing and upsetting it can be to get a diagnosis of Fibromyalgia AND sleep apnea - but you will survive! This is a great forum, with a large group of knowledgeable and compassionate people! This is where you can turn ANYTIME you need to! I have always said that knowledge lights up the darkness so there is nothing hidden - information can make you strong! There are no stupid questions here and the people here do not mind repeating themselves! They'll even post links and direct you to the best places to look for information. I couldn't ask for a better bunch of people to serve my life sentence with! {HUGS}

[Sleepless on LI]

LOL...apology to Neversleeps. I must have missed her thread. Didin't realize she had written one before me, so I thought, R&R, you were confusing the names (both have Sleep in them).

And, R&R, I'm glad you never went through what I described. But all's well that ends well, and this is ending rather well...

And, Cat-A-Tonic, beautiful reply.

[rock and roll]

Not that your message wasn't good Lori

[Sleepless on LI]

Not that your message wasn't good Lori

Aw, you don't have to try to make me feel better for my ignorance. Next time I'll make sure I"ve read ALL the posts before I make assumptions. You know what they say about when you assume...held true in this case .

[rock and roll]

Believe me, I have been ASSumed many a time.

[Sleepless on LI]

Believe me, I have been ASSumed many a time.

Glad to know I'm in good company .