The birds tell me it is morning, but I cannot force my eyes open. I can already tell it is going to be a day my girls are going to have to fend for themselves for most of the morning. I cringe with every movement. Joints crack as my bones bend. My ears are ringing and the pressure in my head feels like it may burst at any second. I hear the faint sounds of little feet on hard wood floors in the kitchen and then the pantry door opens. It is my youngest. This summer she has been the first one awake most days. She is always the first one who is hungry. I want so badly to jump out of bed, run into the kitchen, smother her face with kisses and make her a huge breakfast of pancakes and eggs. I imagine me and my girls eating breakfast together, planning our day and having a fun, “normal” morning…the ones where mommies get up, get ready for the day and actually get out of the house. I know this is not going to happen. Not today. I still cannot open my eyes. I fall back to a passed-out, sick, exhausted sleep.
I don’t know how much time has passed, but I hear her voice near my face. She is asking me if she can have something – food, markers, a game. It happens a few times during the morning. They have been good today. They let me sleep. They know it is important for me to rest, but I don’t want to be resting. I want to be with them. I want to participate in my own life. I miss it more than I can express. I feel the familiar twinge of guilt mingled with bitterness. Then as quickly as that feeling comes over me, an optimistic thought follows and I pray scripture under my breath. I will not let this disease make me a bitter, depressed person.
I attempt to sit up and my head swims. I would give anything to feel rested after 8 hours of sleep. Instead, I feel drugged, dizzy and my body begs me to stay under the covers. I pull my ridiculously tangled hair up in a bun and slowly make my way to the kitchen… each step feeling heavier than the last.
I wrap my arms around my girls who are helping themselves to a mid-morning snack. I cut them up some fruit and sit with them for a minute. I thank them for entertaining themselves so that I could rest. I promise to take them for ice cream later as a treat, hoping my body cooperates for the outing. It might have to be tomorrow, but I am going to push myself to at least get a shower.
First things first – meds, coffee, shot. Sometimes the order changes because coffee likes to come first. The coffee starts its dripping, as I desperately try to clear the fog from my brain. I have no appetite, but it is necessary to get something in my stomach before I take my pills. I pull out my box o’ meds and drink my water, as I take a bite of toast. I get out my B12 shots and warm up the syringe. I give myself a shot, take a few more sips of coffee and kiss my girls on their foreheads. I have to lie down for another hour before my shower attempt, but I’m determined to get out of the house today.
Treatment: it’s a 24 hour job…
After one errand, I come home exhausted and ready to crash, but there are still at least 6 hours till bedtime. The thought of preparing dinner is too overwhelming, so I lie down on the floor near the girls and watch them play Barbies. My muscles begin twitching, a sign that some herxing will be coming soon. I brace myself for what might come in the next few hours – focusing on drinking water and detoxing as best I can. My girls start fighting and my head cannot handle the jolting noise. Their argument results in me being short and heated with them. I instantly regret my words. It is not their fault. I am frustrated with my body. I am so sensitive to noise. We make peace and I turn my attention to dinner, pushing past the herx as best I can.
Night finally comes, bringing a worsening of pain, burning joints and contracting muscles. Sleep does not come easily. As my body reaches through the pain grasping for needed sleep, I pray that tomorrow will be a better day. I have too many things I want to do, need to do… must do. I say it out loud. “Please. Tomorrow. Be better.” Because this…this is not living and I want to live again.