scooterpagan's distress

I have just been diagnosed with sleep apnea. I know nothing.
Not yet got a machine as my small town is not prepared to quicken things for its citizens.
Maybe, hopefully, my throat just stays closed one night.

Welcome,
You have found a forum that will help you, if you are willing to try.
There are many people who started out scared and overwhelmed. If you are open to using CPAP and being determinded, you can get help here.

Again Welcome, and I know that you can be successful, if you want your life back you gotta fight for it....

Karen

Scooterpagan

I second the Welcome I too am a "newb" (had my machine about 5 weeks now). This forum is a "Cornucopia" ( I just love that word) of knowledge about XPAP and OSA therapy.

So dive in and be prepared for when you get a machine. I suggest that you review the wiki for a start (if you haven't already done so).

Use the search function if you have questions, and, by all means, post remaining questions here.

The forum members have a huge amount of empathy for us struggling "newbs" THEY HAVE ALL BEEN THERE

I never see "flames or personal attacks, they really want to help So feel free to post!

God knows THEY PUT UP WITH ME

Cheers,

Dave

Welcome to the forum. We all knew nothing, when we started. It's actually a good thing that you have time before you get your cpap, to do some research, so you will know about cpap and masks, before you are given one. Read as much as you can, so you can be informed and proactive in your treatment. Best of luck.

In addition to the Wicki, here's a very good article:

http://smart-sleep-apnea.blogspot.com/

Meanwhile try sleeping on your side rather than your back, as many people have positional sleep apnea.

KatieW wrote:Welcome to the forum. We all knew nothing, when we started. It's actually a good thing that you have time before you get your cpap, to do some research, so you will know about cpap and masks, before you are given one. Read as much as you can, so you can be informed and proactive in your treatment. Best of luck.

In addition to the Wicki, here's a very good article:

http://smart-sleep-apnea.blogspot.com/

Meanwhile try sleeping on your side rather than your back, as many people have positional sleep apnea.

Thank you for the link, Katie. Seeing your smiling face sure is encouraging!

Scooter, welcome! In order to overcome the fears I had to tell myself to be grateful there was a treatment for my husband's poor health. I was sure they were going to say there's nothing to be done for him and I would lose him. Beginning this cpap journey is not easy but it takes patience and education. You've come to the right place to learn both.

I had polio when I was three.
I have now got the Late Effects of Polio. I wore callipers (leg brace) for 14 years. I used a walking stick until I became preggers when I had to use elbow crutches. I used these until they gave me too much elbow pain.
When I had my left foot fused, they gave me underarm crutches which I used - & still use when I desperately have to.
In 2005 I had to finally give-in to the wheelchair. To get out & about I use a scooter.
When I was diagnosed with sleep apnea ....... I guess the thought of yet another machine to keep me 'alive and kicking' was less than welcoming.
I asked my husband of nearly 37 years to give me a comforting hug and his response ......"people can't hug you in a wheelchair".
I wrote my original response on that evening.

I am in rural NSW in Australia.
Thank you all very much for your welcome & and I hope my son-in-law's belief in my inner strength comes to the fore once again.

Tell your husband he's wrong because people hug me in my wheelchair all the time!!

Seriously -- while I don't have near the issues you have had, I do understand how you feel. I've gone from being a totally carefree, independent woman to barely walking and needing a power wheelchair for any outings at all. I frequently need my kids to help me with my shoes & socks!! Then to be told I needed breathing equipment -- well -- Yuck!!

But you will find your inner strength and you can do this. We've all been in the position of first learning we needed cpap/bipap/other equipment, then going through the process of getting the equipment and adjusting to it. There's a lot of people here that can help you through -- and will.

scooterpagan wrote:
I asked my husband of nearly 37 years to give me a comforting hug and his response ......"people can't hug you in a wheelchair".
I wrote my original response on that evening.

I am in rural NSW in Australia.
Thank you all very much for your welcome & and I hope my son-in-law's belief in my inner strength comes to the fore once again.

Hi ScooterPagan

First of all -

Welcome to another Aussie in the Forum

We all need a support group to make this therapy a success, so make full use of this Forum, as well as your son-in-law.

There are many, many variables in getting this to work for you. Commitment and patience are essential, but it sounds like your life experience has forced you to develop plenty of that.

Essentials for you are -

Read the forum posts as much as you can, even the most innocuous of titles can sometimes have just the information you did (or didn't) know you needed.

Get an auto machine that has software so you can know what is going on.

Be prepared to try as many masks as you need to get the right one.

I use cpapauction to get my supplies. I have not had good service from any mask/machine suppliers in Australia. Cpapauction will also be a lot cheaper for you, as will cpap.com for anything brand new.

Make sure you get a copy of any sleep studies done, and post your machine details when you get it.

And here is a virtual hug



cheers

Mars

PS I look forward to your baby dragon (which is beautiful) growing into a full-sized dragon

Scooter, when I read your last post I immediately thought of Madalot and here she is! Talk about "inner strength", she certainly has it twofold and I think you do too. Read her threads and you'll know you're not alone. The benefits of cpap therapy will be worth it. We're all here to help you and hug you. Dori

Everyone here struggles with their own set of health issues and concerns. Together we make one great support group for all. I came into the group unsure of what to expect of this treatment. The knowledge shared here dispelled a lot of the fears I had. I am working through the process of getting all the right gear and information. This group is the right place to be if you are in need of support. I wish you well on your journey to improved sleep and improved over all health.

DoriC wrote:Scooter, when I read your last post I immediately thought of Madalot and here she is! Talk about "inner strength", she certainly has it twofold and I think you do too. Read her threads and you'll know you're not alone. The benefits of cpap therapy will be worth it. We're all here to help you and hug you. Dori

Dori -- As always, you are very kind.

There is no doubt that my journey through cpap, bipap, etc., has been interesting if not incredibly stressful. Being diagnosed with sleep apnea and needing a machine can really take its toll on a person. But when you've already got serious medical problems along with this, it can be overwhelming.

And when you add in some of the DME/doctor experiences that are not so great, it can make a person want to run screaming into the night!! LOL

I think we all have to call on our inner strength to get through this. But what really helps is having people that truly understand the stress and frustations associated with this. Plus, the knowledge base a person can call on here is astounding.

Scooter -- please don't give up. Let the people here help guide you through this. There are several other people here with serious medical issues on top of the sleep apnea. They can help you through, especially during those times that you want to give up.

As long as we're venting a bit here, my reaction when I heard my husbands diagnosis was, "OH NO, not me, I didn't sign on to switch from being a wife to a caregiver at this stage of my life. I've done my share with children,a disabled husband,an only sister,dear mother and a stressful career. I feel sorry for myself, I won't do it and I'm going to check out nursing homes for him". That lasted for about a week until I caught my breath and started thinking about my real options. Maybe if I put my heart and soul into this scary treatment I could have a healthier,happier husband to share a better life with me. It would certainly be better than how we were living now with him napping all day and then going to sleep at 9PM keeping me awake with his snoring, gasping,bathroom breaks and restlessness. Umm, maybe something to look forward to if I try hard enough. So the journey began and I found this beloved forum(you all know how I feel about you! ). It took nearly a year of high stress, sleepless nights, patience,reading and asking questions, but it is so worth it to have my husband back to share life's little pleasures with me. Keep us posted. Dori BTW, I'm lucky I have a sense of humor because after all this, hubby now calls his mask "his little girlfriend"!

Thanks for all helpful comments.
BUT .............. I hate my facemask!
I seem to get 4 hourly sleeps and then I feel like I am choking and I have to take it off.
I have a friend who prods me into wearing it and I do put it on each time I take a nap but I hate the whole process and if this is what I have to do to keep me alive .....................
what's the point?
Life should be fun; not a process of hating the fact that I have to go to bed eventually.
I am a moaner I know, but this is proving so difficult for me.
This machine monster has really got me and I am forever in tears.

scooterpagan wrote:...I hate my facemask! I seem to get 4 hourly sleeps and then I feel like I am choking and I have to take it off...

Tell us exactly what is the problem...physical issues and psychological. Amongst us, we experience I would guess just about everything it's possible to experience good or bad with all aspects of CPAP therapy and then some. Someone's bound to have some good suggestions if we know exactly what it is that's the issue.

Right now, I'm going thru a dreading sleep phase because I'm waking up multiple times at night which is wreaking my sleep...I've gotten some good suggestions here and from my sleep doc.

scooterpagan wrote:...I am forever in tears.

I'm sorry! This apnea journey is no fun; it gets a whole lot better when you start getting some restful sleep but finding the right type of mask and then one that fits your face comfortably is one of the biggest challenges many of us must deal with and it sounds like you are in that group. The emotional rollercoaster is real familiar to all of us! With effective treatment, that rollercoaster smooths out.