Recently I was with a friend when this happened:
Me: I have to go home soon and lay down.
Them: Lucky! I have to go to work. I wish I could just lay in bed all day.
What I wanted to reply was “Alright. Want to trade places? You can have my pain, chronic fatigue and inability to do even the most basic of tasks, while I get to work full time and be independent.” When I’m laying in bed resting, I feel anything but lucky. I hear the cars go by out my window, planes flying overhead, birds singing… but I’m stuck in bed. Majority of the time, I’m actually stuck in bed. I have a chair by my bed to use as an assistive device to help me stand up because on bad pain days I can’t hoist myself out of bed on my own. I take 17 pills at night. I have to monitor my blood pressure. I have at least one doctor appointment a week. I walk with a cane. Life with chronic illnesses is not easy, nor is it something to be jealous of… is it cool that I watch TV, read and play video games all day? Yeah, I guess so. But the whole thing is tainted by pain, nausea, discomfort, rambling thoughts, and sickness in general.
To get an idea of what an average day feels like for me, imagine these steps:
- Get a severe sunburn all over your body, every time you wear a shirt or pants it is painful.
- Overwork your muscles so you’re incredibly sore.
- Don’t sleep for 48 hours.
- Headbang for 10 minutes every hour.
- Turn on every light you own and point them all at your face.
- Get the flu (and never get healthy again… just always have the flu).
- Electrocute yourself so your muscles twitch and you get sharp, shooting pains.
- No matter how you sit/ stand/ lie down, you are always uncomfortable.
- Cover yourself with something that makes you itchy… don’t take it off.
- Go to the bathroom at least every 90 minutes, for 5+ minutes every time.
- You can’t eat anything. Hungry? Too bad. Drink some baby food and hope for the best.
- Tie cement blocks to your wrists and ankles.
- Wear a snowsuit 24/7 so you’re always overheating.
- Spin around 10 times whenever you stand up.
- Eat all the beans you can and deal with the toots.
Now, try to clean the house, go shopping, work… live your normal life. That touches on the surface of what it feels like to be trapped inside my body… still think I’m lucky? Didn’t think so. I’m not being lazy, this isn’t fun, and I assure you that you don’t want to trade lives.
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