Night.

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.

Love,
Milly

Sharing

Hello my friends.

For all these months, the years of having a constant urge to write had left me.  I haven't really been journaling or doing any logging like I had for so long.  Lately, it's been creeping back ever so slowly. I don't have the vivacious need to write, but I do feel a tug.  I know that not doing so will leave large holes in my story that I have for so long painstakingly archived, if not well at least in almost its entirety.

While I know I have no energy to do continue that, I at least would like to tell some daily stories that might be boring but will at least share the struggles and triumph of living with this disease.  The simplest of chores gave me the inclination.  I was trying to get myself put back together after a shower.  As always, it took an unreasonably long time, at least twenty minutes, to do what would take you 2 minutes or less.  My two IV fluid lines got caught up in my bipap machine at least 4 times, tangled up in me, tangled up in everything else it could find.  I kept tripping all over my bags and the vent till I wash shaking.  I have to get dressed and hooked up to things in the proper order or I'll be all tangled yet again.  By the time I'd finished I was so frustrated I was reminded why I only go through the process of a halfhearted shower once a week, something most do once on average without even thinking about the ease of it.  It's exhausting and I have to literally rest up to get it done.  Other chores take similar buildup in stamina in order to achieve, such as dressing changes or a simple trek down my stairs to sit with my family for an hour.  At the end of that time I'm exhausted and can't wait to go lie down in the silence and solitude of my room.

I try to keep my blog posts light and positive, and I always want it to be known how truly blessed I have been in my life.  But I feel the urge to share the reality of what not only I but all who share my diagnosis's go through, for when we share I'm constantly amazed by the unity in our stories and feelings. I want to share for them as well.

Because of my limited energy, please forgive any mistsakes.

Blessings,
Milly