Friday, June 17, 2016

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.  


  1. I can't imagine what you are going through.....take all the time you need to recharge. Is there anything we can help you with? Let others help you. I live in Woodstock, GA. You don't know me from Adam but I am willing to help you any way I can. If nothing else, know my little family is praying for you and Steve daily. You are not alone.

  2. I continue to hold you and Steve in my heart and prayers. Love and blessings to you both.

  3. I see my daddy's days,with my mom and I know what you must be going through. This ALS is cruel and sucks the life out of those worrying and carrying for their loved ones with ALS. Still praying daily for those with ALS and their families for inner comfort and strength.

  4. I'm amazed that you have energy left at all. Most people can't get "it" done when there's NOTHING else going on. Hope, always take time for yourself and you don't have to frame it as being in Steve's best interest either. It's just the right thing to do for so many reasons. It's the oxygen mask on the airplane... Always humbled by you and yours~ Kathy

  5. Peace to you and Steve. Always, always keeping you both in my prayers.

  6. Thought the above comments are so insightful and caring, I can't expand other than to say love and many prayers constantly meant for you both. Continue your courage.

  7. Hope, I would love to help you with some things. Anything you need, from sitting with Steve to cleaning your dishes.. seriously. Like the person above, you don't know me from Adam.(we met briefly at Red Hare a few years ago) My grandmother married a young man she was giving care to. He was paralyzed, considered a quad.. but could definitely use his arms a lot. They loved each other so much. Your story reminds me of them so much. She took such good care of him that he out lived her! (of course, he took care of her, too! in any way he could) He had bed sores realy bad for a very long time. It is very hard to watch. Maybe you could leave the room sometimes. I hope that you are having home health people help you out. My grandma had such a certain way to care for Frank that she couldn't leave it in anyone elses hands because they didn't do it right. Of course that started to change as her own health began to decline... I could go on for days.. PLEASE CONTACT ME.. PLEASE LET ME COMMIT TO HELPING YOU WITH SOMETHING FOR AT LEAST A COUPLE OF HOURS A WEEK. I am also more than willing to listen if you need it. I saw what my grandparents went through. I lived with them growing up. I can only imagine what you go through. I wish I had helped my grandma sooner. Sending you guys Love. xoxo