I'm Around - Sorry to Worry Anyone

robysue wrote:What's waking you up when you DON'T use the vent? And could the same thing be waking you up when you DO use the vent at night?

Crazy idea: Do you have any idea what kind of events the vent is responding to when it starts increasing the pressure up to the level where you wake up? Maybe the events themselves are what is waking you up?

Not crazy at all. And I'm open to investigating any of these suggestions -- if I can. I don't know what "events" the ventilator is responding to. You are correct that the nap yesterday was WITHOUT the vent. The naps I take WITH the vent result in the same type of awakenings. So nap-wise, using or not using the vent does not change the awakenings.

Now -- all night sleeping. I wake up more WITH the vent than I do without it, for an all night sleep - and by all night I mean 6-12 hours, in bed depending on the day of the week and how tired I am. Like with naps, I still wake up quite a bit OFF the vent, but seem to wake up MORE with it.

At one point, I WAS keeping a diary. I was keeping track of a lot of things, including time I went to bed, any problems I encountered, whether I drank alcohol and how I felt the next day. I could never come up with any pattern to explain anything.

Madalot wrote:I respect that wake-promoting agents have worked wonders for you.

Well, let's not go crazy here. They help but they don't normalize my symptoms entirely.

I'm still hoping to find the cause before taking that step. As I've said, I take a boatload of medications NOW and unless it's absolutely necessary, don't really want to add another drug to my situation.

OK.

SleepingUgly wrote:

Madalot wrote:I respect that wake-promoting agents have worked wonders for you.

Well, let's not go crazy here. They help but they don't normalize my symptoms entirely.

I'm still hoping to find the cause before taking that step. As I've said, I take a boatload of medications NOW and unless it's absolutely necessary, don't really want to add another drug to my situation.

OK.

I understand. Sorry if I came off in a way that wasn't polite - I should have chosen my words more carefully. I promise I meant no disrespect. I AM happy that these medications help you and IF we get to that point in my situation, will be happy to discuss them in greater detail with my doctors and give them a chance if deemed appropriate and safe for me. My doctors feel, and I agree, that in my situation, going to those medications would be a last resort.

Most people here are wonderful to me, but I know that a few have expressed frustration and irritation at me over my situation. Unless you live in my shoes, it's very hard to understand. Let me share something that just happened about 5 minutes ago...

I'm at my desk in my office. My daughter brought me coffee and fixed me some breakfast. These are apple cinnamon breakfast bites from Schwans. I eat them with a fork because they are HOT when they come out of the microwave. A small piece broke off and fell to the floor WAY under my desk. I can't get down there to get it and my daughter is at the other end of the house doing some chores. I don't want to leave it there because it will attract ants. Hmmm...what to do?

I grabbed a tissue and threw it on the floor, hoping it would land flat which it did. Then I used my foot and big toe to move the tissue, trying to lift it with my toe over the piece of food. Took me a couple tries, but I finally got the tissue on top of the piece of food. Then I used my foot to slide the tissue, applying enough pressure (I hoped) to move the food without smashing it into the floor, so that I could reach down from my chair and grab it.

It worked!! Yeah....Crumb of food disposed of and I didn't hurt myself doing it. But it took about 5 minutes to accomplish.

Silly story I know. But it illustrates how things just are not very simple for me -- I know there are others here that understand. John Fisher comes to mind and I know there are others.

I know I need to really figure out my respiratory/breathing/leg movements situation and probably do need to be more proactive. It's just not quite as simple as it seems, just like picking up a piece of dropped food.

Maddie,

First of all, I think the story about getting the crumb of food up off the floor really does let us understand just how hard the simple things are for you. And that's very important for us to understand.

You write:

Madalot wrote: At one point, I WAS keeping a diary. I was keeping track of a lot of things, including time I went to bed, any problems I encountered, whether I drank alcohol and how I felt the next day. I could never come up with any pattern to explain anything.

I'm not surprised that since no pattern seemed to emerge that the diary became frustrating too. I think that's what's great about HoseCrusher's crap diary idea: Keep it simple and keep it to just "how crappy do I feel when I wake up?" as the major thing to track. The only stuff I'd track in the crap diary idea are these pieces of data:

• How crappy do I feel upon waking? A simple numerical scale would even do---something like 0--5 where you decide if 0=feel much more rested and refreshed than before the nap or if 0=feel absolutely, horribly miserable and crappy and worse than before the nap. A three would indicate that you felt about the same amount of crappiness before and after the nap or nighttime sleep period.
• Total time for the nap or nighttime sleep period. This could even be an estimate if you don't want to be watching the clock all the time.
• Estimated number of wakes. And don't worry about trying to write down any specific info about any of the wakes if you don't want to. Just a rough guess about how many times you think you awoke for any reason. And if you want to make an additional note or two about any of the wakes, that's fine, but don't sweat it if you don't.

Now a couple of things you could add if you wanted to AND if they didn't pose a burden on the record keeping:

• Rough time of day for the sleep period. As in "morning nap", "afternoon nap", "evening nap", and "nighttime". This is only useful if you think that the time of the day the nap occurs has any correlation with whether you feel as bad or worse than when you went to sleep.
  Rough time estimate of how long your already depleted energy level manages to last after you first wake up in the morning. In other words, how long does it take to go from how you feel when you first wake up in the morning to feeling totally crapped out and unable to do the things you want/need to do

on the terms that you know you have to live with given your muscular dystrophy and its overall impact on your daily life.

But for now, don't even bother to track any other variables such as alcohol and caffeine; big meals; too much activity that left you exhausted and in pain; nighttime pain and leg movements; worrying about whether you might be accidentally turning on your back sometimes; or any of those other variables we tend to think about tracking.

For those who are interested, this is a presentation by a woman with lupus. She provides an every day look at what it is like to struggle with a chronic condition every day. It really opened my eyes.

https://www.youtube.com/watch?v=jn5IBsm49Rk

Thank you, Robysue, for the diary suggestions. I have my old book and will revise it to track the things you suggested.

My wonderfully intelligent husband came up with an idea to solve my family room, recliner nap issue. We just got back from Home Depot where we purchased a two-tray utility cart, on wheels. We will put the oxygen concentrator on the bottom shelf and the ventilator, mask and cleaning supplies on the top shelf. He is going to mount a power strip with a 25' cord to the cart so all we have to do is plug it in in whatever room I am in. Because it's small and on wheels, I can move it myself if necessary.

By doing this, all naps will be with the ventilator and oxygen. This doesn't resolve ALL my issues, but the planned naps and accidental dozing off without the equipment has been a serious concern. We will have it so that if I start to feel sleepy, I can just grab my mask and turn the equipment on and rest easy.

Madalot wrote: My wonderfully intelligent husband came up with an idea to solve my family room, recliner nap issue. We just got back from Home Depot where we purchased a two-tray utility cart, on wheels. We will put the oxygen concentrator on the bottom shelf and the ventilator, mask and cleaning supplies on the top shelf. He is going to mount a power strip with a 25' cord to the cart so all we have to do is plug it in in whatever room I am in. Because it's small and on wheels, I can move it myself if necessary.

That is a wonderfully hubby you have. It's good that y'all have figured out a way to make it easier for you to nap in your favorite chair since that's important to your psyche as I recall. Here's hoping your naps start helping you feel BETTER instead of more crappy once you can consistently take them both WHERE you want to and with the vent.

Be sure to give that hubby of your some extra special hugs ...

snuginarug wrote:For those who are interested, this is a presentation by a woman with lupus. She provides an every day look at what it is like to struggle with a chronic condition every day. It really opened my eyes.

https://www.youtube.com/watch?v=jn5IBsm49Rk

Thanks for posting this, snug. I watched this a while back. I always compared my situation to a bank account where I got small deposits overnight and everything I did cost me "money" from that account. Same principle.

robysue wrote:

Madalot wrote: My wonderfully intelligent husband came up with an idea to solve my family room, recliner nap issue. We just got back from Home Depot where we purchased a two-tray utility cart, on wheels. We will put the oxygen concentrator on the bottom shelf and the ventilator, mask and cleaning supplies on the top shelf. He is going to mount a power strip with a 25' cord to the cart so all we have to do is plug it in in whatever room I am in. Because it's small and on wheels, I can move it myself if necessary.

That is a wonderfully hubby you have. It's good that y'all have figured out a way to make it easier for you to nap in your favorite chair since that's important to your psyche as I recall. Here's hoping your naps start helping you feel BETTER instead of more crappy once you can consistently take them both WHERE you want to and with the vent.

Be sure to give that hubby of your some extra special hugs ...

My hubby is one of a kind for sure. My frustration with my situation has bothered him, especially when I get irritated enough that I threaten to stop using the equipment. He's good at figuring things out like this and I'm telling you, the cart idea never occurred to me.

I'm hoping that maybe, just maybe, using the ventilator and oxygen EVERY time I sleep will improve something, somewhere. Even if it makes me just a tiny bit LESS tired, it will be worth it.

I have emailed my doctor and new RT and asked IF I need to raise some of the ventilator settings for the recliner position. I checked my sleep study documents and they raised some settings for supine sleep. Hopefully I'll hear back by the beginning of the week so I know.

My doctor emailed me back this morning (she tends to communicate a lot with patients on Sunday mornings) and told me that she felt that being in the recliner, in a more sitting position, would even things out. She suggested using my pulse ox meter during the first few naps and if there is a problem, bumping the settings up to compensate. Sounds reasonable so I'm making sure my meter is fully charged.

Hubby got the cart put together last night, but we've got a lot going on right now so we didn't get the equipment put on it. I'm hoping we'll do that tonight (keep your fingers crossed) so that naps starting TOMORROW can be on the equipment.

Maddy
I haven't responded much but I hope you keep trying. I realize how difficult this is for you, especially now I have been looking after my parents and sister, and see how each step of "picking up the crumb" is such a big thing for them - Mom doesn't see the crumb, dad has to rest for an hour after wards and my sister goes into a rage at the thought there is one more thing to do. Pick your battles carefully and check out with those around you if you are picking the right battle. Pain and exhaustion causes blinkers and tunnel vision and also the desire to protect those around you and to stay "In Control" . The people around you may not want to be protected.

Hugs Maddy, Breath deep and seek peace as they say in Dinotopia.

I am so happy you have such a handy, innovative husband. I've got my fingers crossed that more effective naps with the machine will improve your quality of life. Sometimes, sleeping with out the machine makes us feel even worse than we would have felt without the nap.

Take care

((( hugs )))

BlackSpinner wrote:Maddy
I haven't responded much but I hope you keep trying. I realize how difficult this is for you, especially now I have been looking after my parents and sister, and see how each step of "picking up the crumb" is such a big thing for them - Mom doesn't see the crumb, dad has to rest for an hour after wards and my sister goes into a rage at the thought there is one more thing to do. Pick your battles carefully and check out with those around you if you are picking the right battle. Pain and exhaustion causes blinkers and tunnel vision and also the desire to protect those around you and to stay "In Control" . The people around you may not want to be protected.

Hugs Maddy, Breath deep and seek peace as they say in Dinotopia.

Thank you, BlackSpinner. The truth of it is, I do NOT want to give up. It's not in my nature. I truly believe something isn't right, but things have been back and forth so long and I've gotten more and more tired. I am so confused right now that I don't feel I can answer questions with any certainty about what's happening. It makes me angry that I have been commenting (complaining) about not feeling rested since day one of all this (November 20, 2009) -- and here we are now, almost June 2011 and the problems persist, leaving me more and more exhausted. It's really taken a toll on my overall sense of wellbeing.

I asked my husband the other day if he remembers my being so tired before cpap/bipap/ventilator. He said "you were NEVER this tired before all of this. You were able to function much better before." I know I NEED the equipment to breathe at night - that's a given. But something has changed that is causing this excessive fatigue. Is it the ventilator or is it something else and it's a coincidence? I just don't know anymore -- I'm so tired and confused.

The sleep study, that took 2.5 months to get planned, was supposed to be looking at everything, including other reasons for my waking up. I have no idea if they looked or were so focused on desaturations that they ignored everything else. And I haven't been able to get a reasonable answer.

I found yesterday's "crumb" issue a challenge but it wasn't a huge problem or a stressful one, probably because it was early enough in the day and I was okay. It never upset me and I was proud of myself for solving the problem on my own. But you're right -- I need to pick my battles carefully, which was much easier when I felt better.

snuginarug wrote:I am so happy you have such a handy, innovative husband. I've got my fingers crossed that more effective naps with the machine will improve your quality of life. Sometimes, sleeping with out the machine makes us feel even worse than we would have felt without the nap.

The truth is I nap almost every day, but I've only taken 2 naps in bed with the ventilator & oxygen. Once we get this set up and EVERY nap utilizes the ventilator and oxygen, I'm hoping to be able to better determine IF that's been a contributing problem all along. I think I need to give it more than just two times to say that I feel just as crappy using the equipment for naps as without.