November 20 2017

What does it really mean, to be in bed all day?!?

People seem to have a common misconception about what being in bed all day looks like for the chronically ill.
It isn’t all Netflix and chill. 
I had to call out from work today, which is somewhat of a rarity for me! If I am calling out, my body is giving me the business. I made it (barely) through my shower, got dressed, and even managed to feed the animals. I was running late, but I made it to the door.
I found myself standing there, just standing. I have no idea if it was seconds, or minutes, but I knew I couldn’t go to work. There was no way I was going to push myself to drive an hour-long commute in the stormy, power-outage rain we had. If I could magically transport myself to work, yeah maybe…maybe I could have bucked up and gritted my teeth.
For me (I cannot speak for others) bucking up and gritting my teeth is a full-time job. I push and I smile through the pain; whatever pain it might be that day. (Or heck, whatever pain it might be that second, that minute, or even that hour.)
Symptoms come and go, often without warning.  
My neck and head were pounding. Anytime I blinked, the pain came blinding and searing. If I tried to lift my head, the ache in my neck became unbearable. I took pain meds hoping to fall asleep.
Sleep and I are in a general relationship of oil and water; we just never mix. Often the meds will help, but even they can only do so much.
I laid there, in agony. We lost power so I was shivering and unable to force myself to get up and put on warmer clothes. Nothing offered me comfort, not my pillow, Jon’s pillow, or even no pillow. Jon had just taken a shower before leaving, so I couldn’t take a bath (we have the smallest water heater known to man, on a good day we can get the tub half full of water) or turn on the TV to drown out my thoughts.
Instead, I just laid there hoping the kids wouldn’t wake early. Hoping my co-workers were not mad I had to call out, hoping Jon made it to work okay. Hoping the pain would go away…hoping for things to be different.
There is a moment when I wake, a single breath of a moment, where everything is good. Until it all hits me. The stiff neck, pounding head, and realization that my “nap” did nothing.
I could hear the kids but I was in no position to be with them today. That hurt more than the pain in my upper body. I am extremely lucky to have my brother available who watches them during the day. He just took them as if I went to work.
In a rare moment of strength…I walked downstairs and regretted it. Jackson hugged me tight, exclaiming he missed me. He was sorry that I didn’t feel good and he never wanted me to go. The tears fell hard and fast when I told him I needed to go lay down.
This is what I meant by it isn’t all Netflix and chill. These tears are the reality of a day in bed. It isn’t TV and snacks. It is disappointment–your kids’ and your own. It’s regret, guilt, and pain.
Lying in bed all day means staring at the clock. Feeling guilt like a second skin, and wishing for more.

Tags: , ,
Copyright 2018. All rights reserved.

Posted November 20, 2017 by in category "Crohn's Disease


  1. By gemmaorton (Post author) on

    Well written. I can relate, I’ve spent way too much time in bed over the years. Some of it in hospital for weeks at a time. You know I’m I’ll if I’m in bed past 9am, usually more like 7am. As I’ve grown to dispice it.

    1. By omydaisy (Post author) on

      I’m sorry you understand. This isn’t a disease I would wish on anyone. Any auto-immune. They suck physically, mentally, and emotionally!


Leave a Reply

Your email address will not be published. Required fields are marked *