Learned Something Last Night - Don't Like It!

[Madalot]

I learned something last night that is very unsettling. I don't know why it surprises me. Surprise isn't really the right word since I should expect stuff like this.

For those that don't know or don't remember, I ended up on cpap/bipap/ventilator because I was having difficulty breathing when laying down at night. My research has indicated that is the first symptom in a case like mine of a big problem with the neuromuscular disease, thus why I'm on this equipment. The fact that I went so quickly from cpap to ventilator indicates it's actually more progressed than we had originally thought.

Chat last night was really interesting. Very interesting. I got in around 10:00 pm EST, but I usually get out and go to bed by 11:00 or so. I couldn't tear myself away, but I started noticing around 1:00 am that I was having that same problem breathing while I was sitting at the computer. I finally couldn't stand it and went to bed around 1:45. I hadn't cleaned my mask yet (rats) and was trying to give it a few minutes to dry, so I sat up watching TV. The breathing was so bad that I said "Forget this! Wet or not, I'm hooking up!!" and did. I hooked up and laid down to sleep, but the breathing difficulty persisted even on the machine. It was very hard to push air in and out, even on the ventilator.

I did everything possible to remain calm and just try to focus on calm, relaxed breathing. I finally fell asleep, thank goodness.

But what I've learned is that I CANNOT sit up like that and let myself get that tired. I simply cannot breathe if I do that.

This disease really stinks.

[snuginarug]

It does really stink. I hate it for you. But isn't the ventilator supposed to make breathing better? So that you don't have to struggle so much? Oh dear, I am so sorry this is going on. I'm glad you finally got some sleep. That sounds really unpleasant. Don't over-do it today! Sending lots of love your way!

[Madalot]

It does really stink. I hate it for you. But isn't the ventilator supposed to make breathing better? So that you don't have to struggle so much? Oh dear, I am so sorry this is going on. I'm glad you finally got some sleep. That sounds really unpleasant. Don't over-do it today! Sending lots of love your way!

Thanks, snug! Yes, the ventilator is supposed to make that better. That's one of the reasons I'm a little distressed right now! In truth, I had noticed a few nights where I was having that trouble breathing early when I first laid down, but I was able to endure it and go to sleep.

The fact that this is happening says to me that my condition may have progressed enough, again, that we need to look at the vent settings again. But if they can't figure out what to change to solve it, this situation may take a turn that I'm not prepared for.

Why does this stuff ALWAYS happen right before the holidays? It's hard enough to address it on a regular day, but before the holidays? Impossible.

But I sure as heck am NOT going to sit up until the wee hours in chat anymore. I'll probably miss a lot, but it's better than what happened last night!!!

[HoseCrusher]

Madalot, take a deep breath, look up at the sky, sip a nice warm beverage, and let the stress of the holidays pass for a moment. Things often come in waves and they can beat you down. If you take a moment and reflect on peace and harmony you will often be lifted above the waves.

While this is distressing news, you are a strong resourceful person and can take it a step at a time. And we are all rooting for you.

I lift my glass in a toast to you hoping for a stress free and relaxed holiday season.

[Madalot]

Madalot, take a deep breath, look up at the sky, sip a nice warm beverage, and let the stress of the holidays pass for a moment. Things often come in waves and they can beat you down. If you take a moment and reflect on peace and harmony you will often be lifted above the waves.

While this is distressing news, you are a strong resourceful person and can take it a step at a time. And we are all rooting for you.

I lift my glass in a toast to you hoping for a stress free and relaxed holiday season.

That's sweet, HoseCrusher. Very sweet indeed. I'm okay this morning, for the most part. I AM having a little trouble, but it's not as bad as it was last night. I was thinking, in the shower, about how to describe this. It feels like somebody is sitting on my chest, making it hard for me to push air in and out. But the person on my chest, right now, doesn't weigh as much as the fool from last night!!! Hee Hee.

I wish I could just relax, but that's not in the cards today. We're doing Christmas Eve at my house tomorrow night and I've got 6 additional people coming for dinner. I've got to start preparing food today for tomorrow and Saturday morning. My kids are cleaning the house and we're going to start cooking stuff after lunch. My kids will help, which is good.

I'll make it -- I always do. It's just super annoying to have to "think" about breathing. I don't want to think about it. I just want to do it like everybody else --

[snnnark]

When does the replacement mask get there? Are your leak rates the same for the defective ones with your modification?

Basically what I'm asking is do you think you are getting your full therapy pressure at the moment?

Lets hope it comes right soon!

[Madalot]

When does the replacement mask get there? Are your leak rates the same for the defective ones with your modification?

Basically what I'm asking is do you think you are getting your full therapy pressure at the moment?

Lets hope it comes right soon!

That's a good question. My leak rate is excellent with the old mask and tape. My new mask won't be here until next week, if we're lucky, but I'm reasonably sure that leaking isn't the issue.

But I appreciate the idea to consider!!

[JohnBFisher]

Madalot, you have my sincerest empathy. If I could, I would willingly pick up some of your burden. I know just how frustrating it can be to find your body not doing some amazingly simple and basic things.

As you probably remember, I'm currently on Short Term Disability and will transition to Long Term Disability soon. Just as you do, I have good days and then not so fun days. Unfortunately, as you've seen the split between the two seems to swap somewhere along the line. At first, it's mostly good days. Then, for no real reason it's mostly not so fun days.

And then you will have the chance to learn to reset your definition of good and the not so fun days. That is a frustrating thing to have to do. What would have once had me kneeling and vomiting is normal dizziness for me.

Most recently, I've had more and more problem with my speech. My speech and theater background allows me to FIGHT as long as possible. But I find I must CONSTANTLY pay attention to my speech. And I don't even try to handle glasses anymore.

I just wish I could get the "buzz" that should go along with all these symptoms.

And there's no doubt others here suffer from other chronic issues. We all understand the need to vent (sorry the 'manifold' puns!). It's safe to do it here, because others DO know how you feel. Most of us won't roll our eyes and say "Oh, it can't be all that bad ...".

So, yes, we agree "This disease really stinks." Shout, scream, jump up and down. Sometimes we must fight against the monsters that would overwhelm us. We'll slog right along side you .. and agree completely with you.

But I sure hope that you also find some peace during this season of waiting and renewal. My prayers and thoughts are with you.

[Madalot]

I hear you John, and thanks. Wise words from a wise man.

Like you said, I used to have a combination of good and bad days. Mostly good with only a few bad. Then they were about the same, followed by more bad than good. And then came all bad days.

So, I changed my definition of what defined "good" or "bad" day. It used to be that a good day is where I felt pretty good and felt like doing something (anything). But when there just weren't any of those days anymore, a good day was one where I didn't fall! So, I started having more good days based on that defintion.

So maybe it's time to look at my definition of good/bad day again to make it better. If we base a "bad" day on serious breathing issues, I'm having mostly good days right now.

I guess it's all in your perspective, huh?

Thanks again, my friend. As I've said many times, you are a very nice man, a gentleman in every sense.

[BlackSpinner]

Hugs to you Madalot. I have watch various members of the family go through this kind of stuff. So hugs and more hugs.

[sister]

OH YES, this disease really stinks!!!
Night before last I just wanted to go outside and run around and around the house!!! I was ready to give up!
But I didn't and last night I tried again and slept almost 8 hours.
Madalot, I am so sorry you are having such a hard time, my heart reaches out to you.
Please don't sit up late anymore,try to go to bed on time. If it helps to know there are some of us that have a hard time using the c-pap machine.I have been trying since 2006 and like I say,sometimes I just get so down.
I hear you,and I know you are worried and upset,but hang in there,things will get better.
I will be praying for you and hope you have a wonderful holiday.
GOD BLESS YOU!!!!

[BusyLyn]

As others wiser and more articulate have already said, only you can define a good day or a bad day. Sometimes things really just suck and you want to give in totally to despair. It is so much harder to square your shoulders and face the latest issue head on than it is to have a pity party. But you've already decided to continue the fight, and things do get better.

We're all here for you, whether it's to listen to you vent (exploding is messy ), or to help you solve another problem. That's what good friends are for, and we're friends with (some) issues in common. Let the knowledge that you have good friends here and the love and joy of this holiday season help to bring you some inner peace.

My thoughts and prayers are also with you.

Lyn

[kempo]

Madalot, have you changed any of your meds? When I first started cpap my doc prescribed a med for restless legs. I started to fell like what your are describing. I started noticing it was difficult to breath while I was setting watching TV or on the computer. When I stop taking the medication, and I can't remember the name, the symptom went away.

[Madalot]

Hugs to you Madalot. I have watch various members of the family go through this kind of stuff. So hugs and more hugs.

Thanks, BlackSpinner. I'm sorry you have family members suffering as well. They're lucky to have you supporting them.

OH YES, this disease really stinks!!!
Madalot, I am so sorry you are having such a hard time, my heart reaches out to you.
Please don't sit up late anymore,try to go to bed on time. If it helps to know there are some of us that have a hard time using the c-pap machine.I have been trying since 2006 and like I say,sometimes I just get so down.
I hear you,and I know you are worried and upset,but hang in there,things will get better.
I will be praying for you and hope you have a wonderful holiday.
GOD BLESS YOU!!!!

You're very kind - thank you. I'm definitely NOT sitting up late anymore. That's for sure. I promised hubby I was getting online now (around 9pm) and would log off by 10:00 at the latest and go to bed.

Best wishes for a happy holiday for you as well.

As others wiser and more articulate have already said, only you can define a good day or a bad day. Sometimes things really just suck and you want to give in totally to despair. It is so much harder to square your shoulders and face the latest issue head on than it is to have a pity party. But you've already decided to continue the fight, and things do get better.

We're all here for you, whether it's to listen to you vent (exploding is messy ), or to help you solve another problem. That's what good friends are for, and we're friends with (some) issues in common. Let the knowledge that you have good friends here and the love and joy of this holiday season help to bring you some inner peace.

My thoughts and prayers are also with you.

Lyn

Thanks, Lyn. Very much appreciated. I usually keep a pretty good attitude and will rally and get it back. I am starting to look at this as if a person is sometimes sitting on my chest. Sometimes I can kick the bugger off and sometimes he or she is not too heavy and I can deal with it. It will be fine.

Madalot, have you changed any of your meds? When I first started cpap my doc prescribed a med for restless legs. I started to fell like what your are describing. I started noticing it was difficult to breath while I was setting watching TV or on the computer. When I stop taking the medication, and I can't remember the name, the symptom went away.

Good thing to think about, but no. I haven't changed anything. I've been on the same medication, same dosages, for about two years now with no changes.

[SleepingUgly]

At times, for no known reason, I've had the feeling that I'm not getting enough air and it makes me very anxious, so I feel for you.

Also apologies for my role in making the chat room so exciting that you didn't get to bed on time (nor did I...).