Written by
A. K. Switzer
January 2020
Written by
A. K. Switzer
January 2020

There was a temporary relief in being diagnosed. 
There was validation to put a name to the symptoms I am experiencing. It isn't all just in my head. Because let's be honest, I was beginning to think maybe it was all in my head. 

But now the feeling of relief is gone. In its place is the realization that it's never going to go away. That my future now consists of good days and bad days. 

Sometimes, when I wake up in the morning I feel just fine. Other times, it's just a struggle to sit up in bed. I have to look myself over very carefully, make sure that I apply the glue and bandages I'll need to make it through the day. My head often throbs and my eyes ache because I barely slept. And what little sleep I did manage wasn't very restful. I couldn't get comfortable, despite the hundreds of different positions, turning the heater on, turning the heater off and opening the window. Calling the dogs to come to lay on throbbing limbs that may or may not start spasming.

Now that I'm awake, I take inventory of what else hurts. Sometimes, it's just a headache. On a really bad day, my shoulder will be shaking with a consistent dull ache. My wrists will feel like they've been hit with an iron pole, and my bones will feel heavy like gravity is too strong and pulling them all down. My ankles as I walk down my stairs will lock up and I have to adjust how I move. It sends shooting pain up to my knee, which will continue to hurt at random. Sometimes my back will have sharp, shooting pain that causes me to have to brace myself so I don't fall over. Other times my skin feels like it's on fire. There won't be a rash or wounds but just the feel of the air on it will make me cry.

And so I have to apply glue, wrap things in bandages and put myself back together. I have to make it through the day. Some days are going to be good, and some are going to be hard. Putting a name to that pain doesn't help any of this. Now it means I need to find doctors who won't just look at me and say I'm fine because I managed to put myself together. That I don't look sick. I need fewer people to tell me to just get more sleep or to just take some Asprin, it will be fine. 

I thought I could just explain all my pain away. My ankles hurt because I walk too much. I have headaches all the time because I have four kids under the age of twelve. Who wouldn't be tired all the time and have all the headaches? My back hurt from the spinal shot I got with my c-sections. Now I can't miss a pain pill without feeling most of that pain all at once. 

It isn't a new term to me. I've heard of it before. It affects many, many people. But there was a time that it was so far away from me. I felt for those who suffered but never truly understood the weight of what it means. It's not a death sentence but more like a life sentence. One that can't be overturned. It's still really fresh for me. It's only been a few days and a lot of processing. I'm set for the next steps, getting all the management put in place. Working through it. It's not the end. But what felt like temporary relief now feels like an avil that is always sitting on top of my shoulders, weighing me down. 

So for now, it's one day at a time. Glue, medicine, and bandages. 

Let's be friends

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