18 months on the hose

[crossfit]

Hi All,

I don't post often but when I was first diagnosed and starting treatment I was a regular. Some of you might remember me. Anyway, a friend of mine just had a sleep study and I was looking through my old posts for some information for him and realized that I posted almost exactly a year ago about how I was doing. I figured it would be interesting to post again now. Just for info: I have severe sleep apnea with an untreated AHI of 61. Using my apap I have less then 2 AHI over the last year.

At this point in my treatment, some things have moved forward and some things have not. I had hoped to reverse my high blood pressure and weight gain but those are holding steady. At least they have stopped increasing. But that is really the only thing that hasn't gotten better.

What has gotten better?

My relationship with my husband continues to improve daily.
My relationship with friends is getting better and better now that I have the energy to actually talk and think.
My job as a homeschooling mom is much better. I had lost most ability to concentrate or remember and was taking my son to a homeschool program since I was sleeping most of the day trying to catch up from all the bad nights. Now I teach the group of young homeschoolers a course on Ancient Egypt and I co-teach an AP level high school biology course.
My interest in my own hobbies has come back. I read read read. I love learning. And I now retain what I learn and am able to apply my learning in life. This had slowed to almost a standstill before treatment.

I still find myself totally panicked if I have to sleep without my machine. I have managed to get two back up machines and two masks as well as a back up battery system for nights when the power goes out. Everything works smoothly. My insomnia has all but dissipated. I have traveled with my machine and found that to be relatively easy, even on airplanes. I am taking a trip out of the country in February and hoping that will work well and doing that research so that things go smoothly.

Speaking of that trip, I am planning to go on a 7 day wilderness cruise into the amazon forest in Brazil. Though it is billed as a cruise, this isn't a luxury trip. Its a maximum of 18 passengers and we will be getting up with the sun to hike in the forest for two hours before breakfast. After lunch there will be another 2 hour hike and on two or three nights we will have a third, nighttime hike. There is no way I could possibly have considered a vacation of this sort before APAP. Getting up early on its own would mean I would need to sleep all day to make up for the last hour of lost sleep. I couldn't hike at all with all the aches and pains I had from both sleeping so long and from the generalized inflammation in my body due to the hormones released during apnea events. I would possibly have been able to do a cruise of the luxury type where getting up to eat would be my main focus but never a trip like this.

My life has come back. There are numerous times that I do five or six big projects in a day and still have energy for more. This contrasts with being able to do one project a week and needing four or five days to recover from the lack of energy afterwards. My relationships with all my friends are better. Life is good again and I hadn't even realized how bad it had gotten. OSA is insidious. It steals our lives slowly so we don't even notice until our brains are too far gone to notice. I am so glad to be alive again.

[Irene P.]

Thanks for sharing your experience. It is encouraging to those of us who haven't quite reached that level yet.

[pmcall57]

Wow! Thank you for posting this. After a couple of months, I can definitely feel I'm on the road to where you are now. (And I want to go on that cruise to the Amazon. Someday!) Pam

[Babette]

Crossfit, you continue to inspire me, and everyone on this board. Thank you for this post!

It's not a miracle cure. It's a journey. I too have found some things have not improved, but they haven't WORSENED either. And hopefully now I have the mental energy to go farther with improving those things that haven't improved.

I'm so grateful for the improvements I've gotten.

I will never travel to the Amazon.

YOU GO, GIRL!!!!!
Babs

[carbonman]

Cfit, class of mid-2008....you, JNK, me.

Yes, thank you for this post.
No matter where each of finds ourselves along this road,
it's good to hear a success story.
For me it is the confirmation that the Zen of the Mask is alive and well,
and lives within you.

My life has come back.

What a powerful statement.
There can be no greater statement for motivation.

Your Amazon adventure sounds........amazonian.
I hope you have a wonderful time.
We are going to need the full story and pics when you get back.

It is a journey.
Be well!
I'll see you on the road.