Need Some Smacking - New Update

[Madalot]

Having a Muscular Dystrophy makes it difficult to be active. I can't move around too much or leave the house on my own. I stay at home doing the little I can do physically, being on the computer, etc. I end up in my recliner by mid-afternoon, reading or watching TV, and inevitably, doze off.

My son brings my cart with my ventilator/humidifier/oxygen to the family room every day, so my equipment IS here for me to use. The problem is I frequently don't. I either don't plan on sleeping or decide a short nap, without my vent, won't kill me.

A week or so ago, I starting noticing chest pains (not horribly severe, but noticeable). I was having them every day/next day of a nap without using the ventilator.

The days I DIDN'T nap OR used the ventilator during a nap -- I didn't have chest pains later that day or the next.

But a nap in my chair, without using my equipment, I had chest pains later that day and into the next.

Coincidence? Perhaps, but I'm thinking that I'm being sent a LOUD message.

So -- a little smacking to make me listen probably wouldn't be a bad idea at this point. I've got to mask up when I start feeling sleepy, even if I end up not sleeping.

But making myself do it -- therein lies the problem.

[chunkyfrog]

I can't bring myself to physically strike such a cute avatar, but:
BAD KITTEH!

[nanwilson]

Maddy
My smack.. says your lungs and heart are both MUSCLES and you have MD :
Hose up lady, we, along with your family want to keep you around.!!!!!!!!!
Nan

[Madalot]

I know what part of my problem is..

I'm all comfortable in my chair. In order to get masked up, I have to put the mask on, which is not very easy to do in a recliner (for me anyway). Then I have to reach WAY around and turn on the Trilogy, then the humidifier, then reach down and get the oxygen. By the time I've managed all this, I've stretched my arms so much and struggled (panting the entire time) -- and almost half awake at that point again.

No excuse I know -- but it's so much effort for me to get masked up and get all the equipment on.

But Nan is right -- when I sleep in the afternoons, it's no different from sleeping at night and my diaphragm muscles cannot keep me breathing. It's got to be a huge strain on those muscles when I don't have the ventilator.

Perhaps I should smack myself hard, huh?

[quietmorning]

Sounds like your son needs one more step to his daily routine. . .simply putting your mask in your lap.

(((((hugs))))))

I bet he loves you enough to do this. <3

Edit. . .just read your most recent post - again. . .some how the dots didn't connect. Pft. My apologies!

Time for the people in the know to make a remote for cpap machines.

Wait. . .setting. . .does your machine have an auto on? This might be the ticket - to just simply be able to put on your mask and breathe. This is how mine turns on every night. Maybe?

Perhaps putting on your mask may be something your son can help with.

[kaiasgram]

No public flogging for you Maddie, sorry! Here's a two-cent suggestion though: Since you said that you always end up in your recliner in the afternoon AND that dozing off is inevitable, what about masking up as soon as you sit down in the recliner, before you start getting too drowsy. Would that make it impossible to read or watch TV because of the full face mask?

[BlackSpinner]

I know what part of my problem is..

I'm all comfortable in my chair. In order to get masked up, I have to put the mask on, which is not very easy to do in a recliner (for me anyway). Then I have to reach WAY around and turn on the Trilogy, then the humidifier, then reach down and get the oxygen. By the time I've managed all this, I've stretched my arms so much and struggled (panting the entire time) -- and almost half awake at that point again.
?

Can they all be put on a power bar within your reach where you just hit the switch?

They have arm rest things with pockets - can the mask and O2 thing be put there?

If these were available you could just mask up and hit one switch

I have been doing stuff like this for my dad. mom is past it but still all her things are within reach of her chair, we made a special table for her.

Last week I was haunting all the medical supply places for special spoons and plates for her. I was amazed at what was available - at a price - but it gave me ideas for other things.

[jweeks]

I know what part of my problem is.. I'm all comfortable in my chair.

Hi,

How about trying some problem solving strategy. Make up a list of every possible reason why you don't use the machine when doing a nap. Then see if you can work through that list and come up with solutions. For example, you mention that the stuff is hard to get. I wonder if your son could rig up some kind arm on the cart to put the stuff at an easier reach for you. Another one you mention is that the mask is hard to put on. I wonder if there is a different mask that is easier for you? For example, I use a Swift LT, and that doesn't require any adjustments when I put it on--it just slips over my head and clips under my nose.

If you get all the mechanical and logistical stuff out of the way, then we can focus more on you.

-john-

[Todzo]

I know what part of my problem is..

I'm all comfortable in my chair. In order to get masked up, I have to put the mask on, which is not very easy to do in a recliner (for me anyway). Then I have to reach WAY around and turn on the Trilogy, then the humidifier, then reach down and get the oxygen. By the time I've managed all this, I've stretched my arms so much and struggled (panting the entire time) -- and almost half awake at that point again.

No excuse I know -- but it's so much effort for me to get masked up and get all the equipment on.

But Nan is right -- when I sleep in the afternoons, it's no different from sleeping at night and my diaphragm muscles cannot keep me breathing. It's got to be a huge strain on those muscles when I don't have the ventilator.

Perhaps I should smack myself hard, huh?

Part of this is probably planning.

You seem aware of what is hard - so - make it easier.

How about a hanger for the mask near where you put it on.

Then look into ways to make it easier to put on.

Finally, perhaps a planned nap or other device to get your energy levels up.

You show good planning asking for help as you have.

May you have a very good week!

Todzo

[Nooblakahn]

Your a great supportive member here, we want you to stay around. Sounds like turning everything on is half the battle for you. As another poster said, why not have your son plug everything into a surge protector when he brings the equipment in, and you just flip that switch. Seems like the perfect solution. If as even another poster suggested he can set the mask in your lap... its just putting the mask on and hitting one switch. Definitely seems doable.

[Otter]

No smacks, just a nudge. You're almost there. You already know how important it is to get that mask on. You just need to overcome some small obstacles to completing a small task that has huge benefits.

If you need more incentive, think of your family. I doubt your son is helping you because he is bored and doesn't have anything else to do. He loves you. And if he finds you dead because you kept napping without your mask, he's going to say, "60((@^^|+, Mom! I told you so!"

[ughwhatname]

I know what part of my problem is..

I'm all comfortable in my chair. In order to get masked up, I have to put the mask on, which is not very easy to do in a recliner (for me anyway). Then I have to reach WAY around and turn on the Trilogy, then the humidifier, then reach down and get the oxygen. By the time I've managed all this, I've stretched my arms so much and struggled (panting the entire time) -- and almost half awake at that point again.

No excuse I know -- but it's so much effort for me to get masked up and get all the equipment on.

But Nan is right -- when I sleep in the afternoons, it's no different from sleeping at night and my diaphragm muscles cannot keep me breathing. It's got to be a huge strain on those muscles when I don't have the ventilator.

Perhaps I should smack myself hard, huh?

Could you put the Trilogy and the humidifier on a power strip with a switch and keep the switch close by? That way, you just need to get the mask on and flip a conveniently situated switch.

[Madalot]

Thanks for the gentle "smacks" -- you all done good!

Excellent suggestions. As far as the power strip and one button, I'm not sure the Trilogy would be okay that way. Not saying "no" just saying a little more investigation might be needed. The Trilogy has batteries that need to be kept charged, so that *might* be a problem having it on a power strip that is turned off. Not sure though.

The mask I use -- I actually keep it in a place/position on the cart that is easy for me to grab. Needing a full face mask (which I do) I've tried most of them and this one IS the easiest for me to put on by myself. I liked the Respironics mask, but it's balljoint clip was impossible for me to use.

I think the suggestion to mask up when I sit down and NOT wait until I start falling asleep - probably the easiest one to implement. Another good suggestion would be to turn the cart, again when I sit down, so that the switches are easy to get to rather than having to reach up and around everything to get to them.

Good plan and very doable -- now all I need is to actually do it.

[jnk]

Are any of us perfect at always having the mask on, even when we doze off? I know I'm not, even though I try very hard to be.

In fact, I still sometimes take the mask off in my sleep at night. When I do that, my wife will hear the snoring and reach over, find my mask, and set it gently on my head/face. That wakes me up just enough for me to put the mask back on while still half asleep.

Gentle, strategic mask placement by a family member may be more helpful in the long run than any online "smacking."

[Madalot]

Gentle, strategic mask placement by a family member may be more helpful in the long run than any online "smacking."

The problem here is I am alone when I doze off. My husband works (a lot) my son is in school and has numerous after school activities (which I encourage and support) and my daughter has decided we're not her family anymore and left.

It's really up to me, and me alone, to decide to put the mask on. I've begun to realize that there's probably an underlying desire NOT to put it on (I won't go into all of that) but I need to address that, overcome it and start doing the right thing.

A lot of "I need to's" -- I know what I need to do....now I need to want to.