615am. Stephanie is still sleeping so soundly I can hear deep sleep breathing. I don't know if it is comforting or enraging. I can't move a single inch, the dog wedged herself tight against me and the cats were happily snuggled everywhere else. And still, Stephanie's sleep breathing goes on.
I want to wake her. I want to cry out but I can't bring myself to do it. The tears slide down my cheeks and off the side before landing in my ears. Trying to reach up and brush them away is pointless. My limbs are asleep....tingling in that incredibly painful way. Neuropathic pain. Oh how I have gotten to know you well. And oh how I hate you.
The time creeps slowly forward. At 730pm, with tears streaming down my face, the sobs starting to get all too real, Stephanie stirs and starts to come awake. Startled out of sleep, she asks what I need. I whimper "I have to get up and I can't move."
She gets up and moves out of my way, thinking, I'm sure, that I should be able to roll over and easily, slid from bed. Not so much. I make maybe 1/4 turn.....maybe more like a 1/8th...and the tears I had been holding back burst through the dam and flood everywhere, "I.........can't". I mumble.
She sits there and rubs my back, my arms, my legs. She dries my face.
Meds. Meds. It's all I can think of. If I get them in me, it will be a good 30 minutes before I can breath without a shooting pain.
Every move, every inch sends sharp waves of pain through every part of me. I have to force myself up. I cry, big sobbing, ugly crying but I finally get my feet to the floor and I'm standing. Standing. I'm standing. Holy Mother of God - I am standing. I reach for the wall and balance myself between the wall and the bed frame.m I ever so slowly reach the bathroom. THANK GOD.
I reach for the door that holds my medication. I can't even think. Should I take the entire bottle? No...probably not the best idea. I sort out two of one kind and two of another. I fill a cup with water and slug the combo back. Please please please work quickly,
Stephanie helps me put on my slippers (no way I can reach down that far) and a cozy soft jacket to cover up my super cozy jammies. She steadies me as we head to the living room couch. She sets me up and makes sure I am comfy. She makes both our coffee's and leaves me alone to collect myself.
That was one heck of a morning wake up.
The rest of the week has been pretty much a repeat. Except I've learned to get myself up. And oh...I ordered and received a HurryCane cane to help me get around from the bed to the bathroom a bit more easily. It was a tough call to make but you can only deny the fact that the disease is starting to get a lead on you and you just might need so help. Not in public yet but around the house, and hey....it might make it easier to ward off the naysayers when it comes time to needing a handicap parking permit...which I fear is coming soon.
The one thing I never, ever really considered when people talk about constant is how much energy constant pain takes from you. How I can go to bed and be asleep by 9pm, that I can literally sleep until noon the next day. I woke at 10am this morning and I could have easily gone back to sleep for a few more hours except I knew I had chores to do and I had to pick Kaylen up at school at 2pm, pick up Kelton and go get their immunizations. Then stop for some groceries before going home.
By the time I arrived home, I was utterly exhausted. It's Friday and I am trying to stay awake for a little longer since the kids are up late tonight. Stephanie headed to bed around 5pm and I was so jealous,
I hope I can sleep in in the morning. My gut says no but the hope inside me says yes. We will see.
2 comments:
That sounds awful and I'm so sorry you're going through it. I hope you can get some relief from the pain.
Ryan lives with pain daily as well. It's heartbreaking at times to see. Usually he just keeps it inside. :( I know you've mentioned a couple of meds you have taken and I'm sure you've tried all different combos. I was wondering if you have ever tried gabapentin specifically for the nerve pain. Not necessary the back pain, but the pain that might make your limbs tingle and fall asleep, that shooting nerve pain. It works differently than the opioid pain meds. I know you're not looking for advice. Was just really wondering if you had possibly tried it. And if so what your experience was.
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