We Are Brave -- for newbies

[MoonBear]

We are brave people. We are willing to beat back denial, depression, and exhaustion as well as apathy and avarice from the medical profession and its cohorts, the DMEs. We force our tired minds forward, learning when many quit. Our foe is invisible and comes in the night to maim or kill us. To do battle, we arm ourselves with devices that are so counter intuitive that we buck like riled horses at the thought of strapping them to our faces. Still, night after night, we arm ourselves.

We have tremendous endurance. Buckles, nose bumps, skin irritation. The hiss in the night. The hard, foreign feel of plastic against skin that prefers soft cotton. We endure it all and keep going.

We are patient people. We may not feel patient as we get used to our equipment or wait for the ravaging effects of apnea to reverse themselves. But we are alert, even though we are still tired, to minute changes that signal healing. To sleep with the mask for an extra hour. To have gotten past a comfort issue. To learn a new language of strange initials like AHI, EDR, and an array of numbers and calculations that only a statistician could love.

We are smart people. Most people with life threatening illnesses have medical staff helping whose knowledge exceeds their own. Often, we not only do not have support, we must learn and assimilate information that will allow us to be our own best resource by becoming expert researchers. And then use the research to convince the very people who should be teaching us what we need.

We understand the value of community. While most of the culture is becoming more isolated, we band together offering education, encouragement and support to help each other. We spend our time helping others to suffer less. We could give the culture lessons on how to work together.

We are honest people. We acknowledge regret, and mourn our losses. We feel, express and own righteous anger over the
ways in which we are forced to be hyper-vigilant. We talk about our frustrations and our wins, knowing others will hold a large enough container to withstand our sadness at being Ill, and our immense relief when we finally connect with the notion that treatment, with all its difficulties, is a dream, a way of having a life, of kissing spouses and kids, of pursuing a dream, of having enough energy to actually do chores -- all things that those without this condition do not even think about.

To have apnea and to deal with it marks us as people of character. As we navigate the enormity of all of this, kindness and compassion for ourselves and even pride need to be our constant companions. I, for one, have now named my new mask Zest. She and I may be strange bedmates, but I am determined to fall in love with her -- even if she does nip at my nose.

[BlackSpinner]

Love this!

[xenablue]

Awesome! A perfect XPAP creed!

[DoriC]

This leaves me speechless. I haven't told my husband in a long time but I just went and kissed him and told him again that he's my hero. He was watching football and kind of looked at me "funny"! I've printed it so I can read it whenever I need to. Thank you.

[mars]

Hi MoonBear and Everybody

What a wonderful essay !

A classic no less.

Words to be saved, and reposted many times

cheers

Mars

[robysue]

Well said MoonBear!

[brazospearl]

MoonBear, honey, thank you for this! Beautifully written and inspiring.

[chunkyfrog]

Beautiful--I'm getting a little choked up--gotta go hose up.

[kteague]

MoonBear, you have captured so well a new (and not-so-new) cpap user's experience. I remember the point when it dawned on me to be proud of how well I had managed for so long under adverse conditions, and how I had managed to pull myself out of zombieland to to tackle this, my last hope, and persevere thru all the setbacks, frustrations and disappointments. I know how sick I was, and this was no small feat. This realization was a light bulb moment to contrast all the negative self talk I had heaped upon myself. Thank you for this reminder.

[MoonBear]

I am very touched by the responses to this. Thank you all for being part of my life. Bear Hugs, MoonBear

[Larry in cincinnati]

Well-spoken. Friends will ask me how I am doing on the clap. I will usually respond "well, we are sleeping together but there is no intimacy"
For 13months now I have fought claustrophobia, problems with masks leaking, humidifiers not working properly, cold air blowing into my face when trying to sleep, and not much in the way of answers from my sleep doc or tech. I live under a death sentence that if I don,t get used to using the machinery 70 plus incidents an hour will lead to more heart problems and possibly death.
It is only those who share this same malady that understand what I am going thru.

[Mary T]

So true about the fact that it would be so nice to go to sleep without that thing on my face. Also, it would be nice if we could feel like we are not in the respiratory ward of a hospital. I am grateful that my issues seem to be so small compared to the ones who are having such a hard time with their equipment, my heart goes out to all those who are having problems.

[carbonman]

To have apnea and to deal with it marks us as people of character.

It is about so much more than the mechanics of
blowing air up your nose.

In all the ways you have so eloquently listed,
it is an opportunity to go far beyond
what we ever thought possible in our lives.

Very well said!

[BlackSpinner]

To have apnea and to deal with it marks us as people of character.

It is about so much more than the mechanics of
blowing air up your nose.

In all the ways you have so eloquently listed,
it is an opportunity to go far beyond
what we ever thought possible in our lives.

Very well said!

This is so true. I went through a similar situation with migraines which made adjusting to CPAP so much easier because once you have done it once you have learned the tricks. You can then apply them to the rest of your life. Having migraines taught me so much that I have to say "thank you". Having OSA has taught people here so many coping skills and let them know that they too can win and no matter what they can make it through and take back control.

[kteague]

Larry in Cincy, sounds like you had my ex doctor! Hope you've worked thru those issues preventing intimacy with your bed partner this past 13 months. Peer counseling on here is good for that. I'm with you, it helps just knowing someone else truly understands.