A Day in the Life of Chronic Illness

6:30 am. It’s Groundhogs Day. Has it been two weeks or three weeks of dealing with this episode? I’ve lost track. But I get to wake up once again to the same problem that had me tossing and turning all night.

How bad will it be today? That’s all I ever wonder. Will my medicine work right away? Will it all be gone by noon? Or maybe break by dinner? Just please don’t make me to go sleep with it again.

Morning

At least it’s morning. I can now take whatever medication that is supposed to help relieve the pressure. Please work. I put on my worship music to help me through it all.

But now my baby is awake, and I must bear the increase once again as I strain to lift him out of his crib. This part is nothing compared to the increase that comes with getting on the ground to change his diaper.

My whole body feels compressed, as if surely something is going to burst. The pounding in my head hits like a boulder on my brain, over and over again. The stress of the moment builds from my baby moving all over the place. Roaring in my ears is mixed with the sounds of him crying. I can barely even see what I’m doing from the pressure pushing on my eyes. Just get it over with as quickly as you can.

If only I could rest on the couch. It hasn’t even been thirty minutes, but my body needs a break. I need sleep so badly.

But I have to get up. I have to keep moving. Gravity has to help relieve the pressure.

Breakfast

I have to fix us both breakfast. I can only hope this will be one of those mornings where rushing around the kitchen breaks the episode. Forget drinking coffee for energy. I need the caffeine for the headaches. I need any remedy I can find.

My appetite is long gone from the pain causing so much nausea. But I know if I don’t eat, it will only make things worse. Besides, half the pain medication requires food. I learned that lesson the hard way. Being I’m alone with my baby, I can’t afford to pass out today.

Speaking of which, let me continually debate in my head at what point I’ll call for help. Let me start the dreaded protocol of sending out messages to everyone who needs to know my status today. My fingers shake as I try to text. The pressure has built up so much that the circulation feels like it has been cut off in my arms.

I can’t even get one text out without throwing my elbows on the table to hold up my head. I cry out to God for help. I can barely speak, “Jesus!”

Call upon Me in the day of trouble;
I will deliver you, and you shall glorify Me. – Psalm 50:15

My baby sits beside me eating breakfast in his high chair. I promised my husband to always keep him informed and make sure people are lined up for the bad days. I hate this part. I feel like such a burden to everyone. And I know he will think the worst. They all will. Will this be another trip to the hospital?

No. I’m tired of going to the hospital. I’m tired of the long waits in pain and discomfort. I’m tired of the needles, of explaining the same thing over and over again to every nurse and doctor that walks in. I’m tired of having to prove what’s wrong. There is no cure for this. They can only experiment. They can only band aid the problem. They can’t make it go away.

But I’ve made a promise. I have to stay on top of things so that they don’t get out of control… again.

I message my doctor the latest update, in case he has some new advice, but more so to make sure he’s on standby. I text my husband, whose response I can already predict. I then text my mom, mother-in-law, and other nearby relatives to see who is available for the day. I am not only a burden to one but many. I not only need help for me but for my baby. There are some days that we can’t be together, and some days I can’t be alone.

I let my baby down from breakfast and clean up around the kitchen. As much as it hurts, I know I have to move and get things flowing. I am not sure what it does, but it has worked wonders before.

The morning goes by like false labor. The pain subsides enough to make me think the episode is finally breaking. Then it shoots up again. These waves rise and fall repeatedly, deceiving me every time into thinking I’m all better. At what point is it too late to ask for help?

Noon

Maybe if I could take a shower. It may not end it, but at least it provides relief.

I prepare my bedroom with toys and a sippy cup, baby-proof a couple of things, and turn on the tv. I never wanted to expose my child to the tv at such a young age, but I’ve been left no choice.

With my bedroom door closed and my bathroom door open, I’m able to see my child sitting safely in the room while I stand under the running water. I don’t know why this feels so good. It has even ended episodes in the past. I pray for it to work again.

I fall to my knees and let the water hit my back, where the inflammation has built up to the point of feeling broken. I cry as I speak in tongues and beg God for healing. I beg God to let the medicine work. I cry and I pray until I know my baby wont stay satisfied by the tv any longer.

And the pain still lingers.

Water. I need to drink more water. Dehydration causes pain. Sometimes though, it seems like the more I drink, the worse the pressure gets.

At this point, the day has two options. Call for help or continue on my own.

Call for Help

I need stronger medicine. It’s honestly impossible to stay ahead of the pain when the scale can go from 0 to 10 in seconds. Regardless, I need to relieve the tension building up in my body. I need rest. I can’t care for my baby if I can barely care for myself.

My mom arrives within thirty minutes. Relief floods through me that I don’t have to be alone anymore.

Unfortunately, rest is far from relaxing. Half the time is spent trying to find the right position to keep the pressure stable. I know I need to drink, but I don’t want to move and activate everything all over again.

Eventually, enough of of the medications combine to help put me to sleep, where I pray the episode breaks.

Evening

I wake up to my husband arriving home, checking on me to see if anything has changed.

Nothing. I’m due for another round of medications, but I can’t take them without eating first. Nausea hits as soon as I sit up. Waves of pressure and aching pain pound throughout my body. I immediately cover myself with cold wet rags and try not to move.

Jesus, please, make it pass.

How can I eat like this? But how can I live through this pain?

My dinner consists of pedialyte and saltine crackers. Not much different from my lunch of saltines and half a banana. I try a couple sips of unsalted broth, but every effort to move makes the pain so much worse.

My hands tremble as they hold up my head from the table. Cold rags soak me. I can’t do this.

I go back to the bedroom and buckle at the edge of the bed. I’m too weak to stand, but lying down only makes the pressure worse. I have no choice but to kneel down and bow to the only position that brings some relief.

In this moment, I change my bow to God. I cry out through tears for this pain to be removed. Nothing else is working. This is my last hope, my only hope. I’m on my knees in ultimate submission. Please. Please, God, heal me.