Good Thing I'm in "Acceptance" Mode - LOL

[Madalot]

I have been very good and stuck to my guns about accepting the ventilator and the settings and focusing on "just being." I have some good nights, some bad nights. I do not worry or focus on my therapy unless something is obviously wrong. I recently upped my minimum IPAP after having consistent suffocation issues at the lower pressure. It worked and I'm "settled" once again.

I had my 6-month neuro checkup and my physical & occupational therapists were adamant that it is time to stop walking/standing in my house the way I have been. I have gone out of my way to stay mobile (using a rollator) to maintain the muscle tone in my legs, but the pain, fatigue and energy depletion are too much and not worth the benefit.

Now, except for shower, dressing, meals & transferring from power chair to recliner/kitchen/office chairs, I am now using my power wheelchair full time in my house.

It's a major blow to my determination to stay physically mobile, but as with the ventilator, it is what it is. We've made a lot of adjustments in what we do and how we do them and surprisingly, I'm doing fairly well. My organizational and planning skills are proving very useful in allowing me to think of ways to do things that minimize the amount of walking I must do.

Thank goodness for the Kindle, allowing me to read. I think I'd be half insane now if not for that. LOL

A new "phase" of my existence is upon me - and I'm coping as well as can be expected.

[2 B Sleeping Soundly]

Maddie,

I continue to follow your posts and am glad to hear that things have been settling in better for you on the ventilator therapy. I wish that the other medical issues that you are dealing with could somehow improve so you could retain more of your ability to move around and do your day to day stuff unaided, but all I can offer is to keep you in my thoughts and prayers for more the positive changes you want to come to you.

IMO, Acceptance mode and Survival mode are two different sides of the same coin. Acceptance can lean more strongly in a positive direction and presents many more opportunities to overcome and find happiness. Survival, though necessary to preserve and hold up under pressure, cannot be maintained forever, due the more negative stress and energy it takes in the constant fight to survive.

That's why it can be wise (as you are doing) to pick and choose your battles because you can't fight everything. You need the periods of acceptance on the things that cannot be changed to provide renewal for the mind and body to be prepared for the next really serious issue that needs to be survived.

John

[BlackSpinner]

I had my 6-month neuro checkup and my physical & occupational therapists were adamant that it is time to stop walking/standing in my house the way I have been. I have gone out of my way to stay mobile (using a rollator) to maintain the muscle tone in my legs, but the pain, fatigue and energy depletion are too much and not worth the benefit.

Now, except for shower, dressing, meals & transferring from power chair to recliner/kitchen/office chairs, I am now using my power wheelchair full time in my house.

It's a major blow to my determination to stay physically mobile, but as with the ventilator, it is what it is. We've made a lot of adjustments in what we do and how we do them and surprisingly, I'm doing fairly well. My organizational and planning skills are proving very useful in allowing me to think of ways to do things that minimize the amount of walking I must do.

Thank goodness for the Kindle, allowing me to read. I think I'd be half insane now if not for that. LOL

A new "phase" of my existence is upon me - and I'm coping as well as can be expected.

Congratulations on adjusting your strategy. The wise person re-evaluates their "budget" as life goes on. This way you will have more energy for the things that really count.
It is really impressive how you have adapted and grown since you joined originally. Your family and kids are blessed to have you in their lives, you are such a good role model for them.

[Bright Choice]

It sounds like a great idea to allocate your energy. Disappointing for sure, but hopefully it will give you more energy to enjoy the things you like to do. I'm a fanatic kindle reader too. It opens up a whole new world that otherwise might be inaccessible. Keep up the good work. I admire your spirit!

[Madalot]

I was an avid reader for years but got frustrated with my eyes and pretty much stopped. When my doctor started thinking myasthenic syndrome and tried Mestinon, it helped the eyes enough that it rekindled (no pun intended) that desire. When I had to stop the Mestinon due to side effects, I had to find another way to keep reading. The Kindles allow me to do it, plus the ease of selecting books is remarkable. I think a part of my problem was not being able to get to a bookstore or library to select books so getting them online has made it so easy.

This is partly responsible for my change in attitude. I can and do read now so I've got something else to do besides just sit. TV was getting very, very old - depressing.

I recently discovered that one of my favorite authors wrote a ton of books under a pen name. Now that they've been re-released under his name, I've found a ton of his books that I haven't read. It's keeping me very busy indeed.

And when I've read for a bit and get tired, I turn the Kindle off and fire up the Ventilator & Oxygen (right by my recliner) and take a nap. Once in a while I lay my head back, NOT intending to sleep, but doze off anyway. I usually wake myself up gasping & snorting.

I try to be good though.

[Bright Choice]

I just love talking about books! I am far from being a book intellect, I just enjoy a good read. I set a goal this year to read at least a book a week. What do you like to read? Who is your favorite author? I like fiction, especially historical. I have been able to check out library books to my Kindle touch which is great. I also get the free books from Amazon Prime. Do you listen to any books on cd? My best book so far this year is "The Paris Wife" about Hemingway's first wife. I have been an avid Amazon/kindle fan for a long time but just got the new iPad a couple of days ago and it is awesome. I do love my techy toys.

[chunkyfrog]

I am hooked on XM book radio.
Usually just a half hour at a time, then on to something else;
but then they play catch up on the weekend.
Really a boon on car trips when reading would make me woozy.

[Bright Choice]

I am hooked on XM book radio.
Usually just a half hour at a time, then on to something else;
but then they play catch up on the weekend.
Really a boon on car trips when reading would make me woozy.

CF - how does that work? I assume you have to tune in at the right time in order to pick up where you left off. I'd never be able to keep track and would probably miss half of the book. Or am I missing something here?

[msradar65]

Good for you Maddie. I love to read too. So much I got a Lenovo Tablet. I can read kindle, Nook, Kobo and any book that I can download to the reader application. I also use it for surfing, checking e-mail and skype with my kids on college. I love it.

[Madalot]

I also use the Kindle Fire to play "Words with Friends" which is great fun if you like Scrabble and allows me to keep in touch with friends and family a bit more.

Reading wise, I am into Suspense/Mystery/Thriller type books. Some of what I've recently downloaded are Dean Koontz, James Patterson, Jeffrey Deaver. I also like Patricia Cornwell, Robin Cook and more that aren't coming into my memory at the moment!

Dean Koontz is the one that I found had written a lot under a pen name. I'm playing serious "catch up" trying to read all of those. But -- since I got my Kindle in late November, I've read 17 books.

[msradar65]

Oh we like the same authors. I also like paranormal stuff. Witches, werewolves, vampires too. LOL yeap I am hooked on twighlight...but don't tell my kids. LOL I like Anne Rice and a few others who write in the paranormal area.

[HoseCrusher]

Those are great authors. I travel and find it very refreshing to sit down with a good book while I am trying to adjust to the various time changes. It also makes riding in a packed airplane a little more tolerable. I recently finished The Face and found it very interesting.

[Madalot]

Other authors I've read and will catch up include John Grisham, David Baldacci, Mary Higgins Clark, Sidney Sheldon. I just realized that Sidney Sheldon wrote a few books after I stopped reading his stuff, so I've got to go figure out what of his I haven't read.

Being unable to do much physically and forced to sit an awful lot, reading was good until my eyes got so bad. Even when I COULD read, it was all I could do to hold a book as the weakness is pretty bad in my arms.

Weakness and fatigue affect every aspect of my being. Once I started therapy for OSA/Diaphragm Muscle Weakness and got extra daytime fatigue -- sheesh, what a ride.

I still get very sleepy, especially when reading in the afternoons, but it's okay. Kindle off, ventilator on. I've even figured out a way to sleep on my back in the recliner and keep the mask from leaking. One of my custom throw pillows can be shoved under my chin when reclining and the mask doesn't leak much. It also keeps my head from falling off to the side.

When I wake up, I have a drink by my chair, some snacks in a ziplock in case I'm hungry, and my Kindles are right there waiting for me. I make sure I've got several books downloaded and ready so when I finish a book, another one is waiting for me. It works.

[msradar65]

They also make some nice pillow type holders for readers. then all you got to do is swipe to flip the pages! lol

[Madalot]

They also make some nice pillow type holders for readers. then all you got to do is swipe to flip the pages! lol

I'm finding that the pillows I have work very well. I have to be careful about the weight of anything as I have a hard time lifting things.

I'm having to make A LOT of adjustments right now and trying to keep the costs down as much as possible. If I can use something I already have, that's what I'm trying to do.

We went over the weekend and bought something for my bathroom and a new "eggshell" type mat for my bed to try to prevent soreness. That was a fast $100 just for those two things. Plus, I ordered two more "grabbers" to keep in the rooms I frequent so I don't have to keep up with the one I had.

So many changes.