From the eye of the storm...

As some of you have seen I'm going to be taking a little social media hiatus, for an unknown time. Could be a week, could be two; it depends on how much time I need.  I have been feeling a lot of additional anxiety and pressure, and as I wrote on all social media, I was beginning to feel like I had 100 lb weights on my chest.  It was suffocating and overwhelming.

After I wrote yesterdays blog I went to check on Steve, and suddenly I had a thought.  I am treating Steve like a burden,  because the truth is I have let so many things pile up undone around me, that everything feels like a burden.  Of course Steve's not a burden, and thankfully he knows that, it's just me feeling overwhelmed; but that's where the social media break comes in.

It's time to clear off my huge list of things I've let behind. Which I will need all the energy I have to catch up while still being present in our current state of chaos ALS brings. 

So as we are laying in bed watching a movie last night, half a day into my social media cleanse; Steve suddenly says, "I can't breathe."

So many different things make Steve feel this way, I have to start with my list of explanations.  I first check his color in his face.  Okay he's bright red, not white or purple, so that's good. I check his vent numbers, title volume 404, that's what we want, so that's good.  I check his temperature, 98.8, no fever, so that's good.  It's 9 o'clock so I say, "Why don't I give you your meds and if you fall asleep it's probably anxiety, and let's see how you are in the morning.?"  Ok, he says, as this is almost a regular things these days.  

He isn't awake yet, but for the past two months this is happening several times a week.  It's beyond exhausting for both of us, because it's a question game.  Are we doing the right thing not going to the hospital?  Is it anxiety?  Is something brewing?

Thankfully Steve gets labs done weekly, and I can use the little information that provides us with to usually tell, but little by little it's worn the confident caregiver down to a weary, anxious, hot mess.  

This is just one of the factors of what's been happening the past few months.  I've written about the sore.  It's obvious that his healing is improved the more often we do wound care, in fact if he takes more than one day off, it goes backwards.  So we have worked out a schedule where we are doing wound care 5 days a week.  Little by little, that's eating away at my energy, because as I've written about before, watching the one you love suffer being turned while cleaning a sore on his bottom; is hard.  


All in all, I thought I was coping well, but turns out I wasn't really coping at all.  I started putting things off since the last hospital visit which was over 2 months ago, and haven't been able to catch up with ANYTHING.  It's like I'm a puppy, who can't decide which toy to play with.  Should I make these orders, or get my taxes done, how about finishing my Ayurveda class (I took my final this week, finally, and then had a cupcake to celebrate), or how about.....the list is boring and goes on.

Point is, I need all the energy I have left inside of me to truly get back on track, to get Steve back on track, our life back on track.... Social media takes up a lot of my time because it's truthfully how I interact with 90% of the people we interact with.  

I know Steve and I are often stretched, pulled, and tossed around so we will continue to grow and continue to inspire those around us; but in order to have that positive impact we want, we have to keep it together right now.  

I will be blogging daily, because this has helped me get some accountability back in my life.  Making sure I blog after I do yoga and meditate is building some consistency that I so desperately need right now. 

Thanks for supporting us near and far, and for loving us.  You all help us in more ways than I could ever explain.