Saturday, February 22, 2014


Nighttime.  It's usually my favorite time; from the moment I get up I'm aching for it to be bedtime again as the thought of facing the coming seven hours seems almost impossible.  But when insomnia or intense symptoms are overpowering me, it too feels torturous.  Everything aches.  I'm too sore to lie on my side because my shoulder keeps subluxing, but my back hurts so much when I sit up too long.  Lying on my back is often uncomfortable on other joints, and my lines and tubes tangle easily and feel cold against me instead of hanging off the side.  I hate the feel of them, even after all this time.

Insomnia is common in all my disorders, even my suspected diagnosis of mitochondrial disease.  Mito means my body cannot turn food into energy.  Ironic!  I'm unable to sleep and feel so unbelievable exhausted I could burst into tears.  Instead of doing that as it doesn't do any good, believe it or not, I try to distract myself.  There's always a friend also battling the night as well, or a good Gene Kelly musical to make me smile.

It's harder to ignore all the little things at night.  A sore nose from a rubbing bipap mask, curving spine letting off sharp pains with ribs and neck following suit.  Eyes even ache at this time of day.  It's weariness and pain and fatigue so strong that I feel it so keenly as though every cell has many pounds of sand weighing them down.  Breathing and thinking and being and thinking takes effort.  Sometimes, it gets to the point where I just pass out in and out and breathing gets so shallow and slow that it feels as though I might stop. Chronic respiratory failure is a scary and hard disease, and despite my AVAPS aiding my weak breaths 24/7 I struggle constantly

Something, Somebody, much more powerful is helping me lift my tired hands and inflate my weary lungs more than any machine.  Stronger than IV fluids or TPN giving me sustanance.  I know God is my ultimate provider and sustainer of life.  I know He is the One who decides my going out and coming in, my every day here on earth.  I'm ready and waiting for each decision He has for my life, because I trust Him implicitly.

I could never explain fully what this feels like, though as I said in my last post I really want to try.  More important to me though, is that you meet my Savior.


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