Category: Managing Symptoms

Last two nights were rough.

He uses a CPAP machine for sleep apnea, which is a condition common with his disease and causes his breathing to be very labored or even stop many times during the night.  The machine applies gentle pressure to push regular air into his lungs.  It requires him to wear a mask over his nose.  The design of the one he had was no longer working well for him due to pressure sores so we went down to our local medical supply store and got him fitted for a new one three days ago.

But though they fitted the mask in the store, once he went to lie down in it the fit no longer worked, meaning the machine turned off or he pulled the mask off in frustration multiple times during the night, requiring my help.  And then awake, he needed to go to the bathroom, requiring my help.   His speech is so impaired (especially lying down) that it’s difficult to even know what he needs each time he wakes.

Frequent neediness during the night is exhausting and frustrating to both of us.  I get cranky and impatient.  Then I think “what if he dies tonight in his sleep and this was our last interaction.”  Sudden nighttime death is not uncommon with his disease.

I told him “I apologize in advance for any mean or cranky comments I make right before you die and you promise to forgive me for them in advance, ok?”  We laughed a little and he agreed.

And now we have to go back to the medical supply place to try again.

More problem solving.  It’s an endless series of leaks.  You patch the leak in one place and the water starts pouring out somewhere else.

What’s hardest are the problems or symptoms for which there are no solutions.  That doesn’t mean I stop trying, though.  So my mind spins through possible reasons for the problems and possible treatments to try –  or changes to make.

Being woken at night is the worst because that’s when my mind really goes into endless problem solving loops.  What about this?  What about that?  What if this happens?  Or that?  Okay, now he’s gone back to sleep but I’m still there worrying. Ha!

I’m brain dead today and just wanted to nap but we had the respite care volunteer coming to give me three hours.  I was almost too tired to do anything but I know it’s good for me to get out of the house.  So I went down to a local art supply store (it’s actually a house paint store but they have a wall of art supplies) and bought two new paint brushes – a little personal luxury.

And now I’m at our local library which is old and tiny and consists of only one room.  I’m sitting in a rocking chair on the screened porch.  The floors are old weathered wood, the ceiling is narrow beadboard and there are big fans spinning lazily.  I’m looking out on grass and palm trees and blue skies.  I’m not on Larry alert, the way I always am at home.

I’m glad I got out of the house.  Maybe I’ll be more resilient and less cranky when I get home.

It’s early and I couldn’t sleep but I also don’t want to start the day.  It’s been a hard week, for what seems like a small thing.  He had dental work three days ago.

I joke that he’s like a finely tuned race car – doesn’t take much to throw everything out of whack.

It started with a broken tooth. No pain, but obviously problematic. The choice was a root canal and a crown, or pulling it and adding a replacement to his existing partial plate which fit well and gave him no problems. He opted for the latter, a relatively simple procedure.

Two appointments for Tuesday were scheduled. He took an anxiety pill in the morning. That appointment didn’t require novocaine. The afternoon appointment did. All went well – at least for his teeth.

But the day seemed to throw his balance off and make him weak. He didn’t have much of a toothache but instead said his whole body felt beat up. He’s been tired and achy ever since.  Which means he doesn’t really want to exercise.

Eating, already a challenge, has been far more difficult with a swollen lip. He’s had problems to get the food all the way into his mouth so it gets stuck between his lips. Obviously that’s worse with the dental work.

He’s depressed, too. Not smiling much. Hardly talking. I realize his smile is what keeps me going.

So is this just the dentistry and it will pass? Or is it a new level of symptoms that will just have to be gotten use to? That’s really the problem – which is it?  That’s always the question.

I spend so much time wondering about the cause of each new symptom and trying to figure out if some tiny change is the culprit and if I change that change, can we improve things. It’s an exhausting round of thinking.

All our lives when something goes wrong, you figure out how to make it better, or wait it out until it gets better on its own. Got a cold? Wait a week. Got a fever? Take an aspirin.  Infection?  Antibiotics will make it better.

There is no better in this scenario! There is only the same or worse. That’s what is so damn hard! So hard!  Each transition to a new plateau upsets the finely tuned balance.

Time to start this day.  It will probably be fine once we get going.