The Bed Bound Chronicles

So I am bed bound right now. Have been for a week.

I have chronic fatigue syndrome (also known as ME/CFS), so being bed bound is something I am definitely not a stranger to. Typically however, I am only bed bound for a day, maybe two. If I'm in a particularly bad flare, three or four days is understandable. but I am currently on day seven and this is by far the longest I've ever been like this .-. it's frustrating, I won't lie. And when you're disabled, oftentimes a flare like the one I'm in raises the question:

"Is this my new normal?"

The unfortunate reality is that there is no way to know until what you thought was a flare just doesn't go away. So I am just doing my best to remain neutral about it. Cause if I keep telling myself that it's just a typical flare, I'd be lying to myself. It's obviously not, considering I am on day seven without improvement. But to catastrophize and assume the worst isn't helpful either. So I am just doing my best to take it one day at a time. 

So in the mean time, let me tell you what being bed bound is like for me.

I wake up and pretty much immediately know that I'm gonna be bed bound. My body feels like it's full of lead, I'm in pain, and I'm foggy headed. I attempt to sit up in bed to really gage where my body is at. 9 times out of 10, I can't even sit up on my own. This is one of the reasons I have a specialized medical bed. the head of the bed sits up for me. So i grab my button, sit myself up with my bed, and call either my spouse or my dad (We live with my parents so they can help take care of me with all my disabilities) depending on who is home.

They will lift me into my wheelchair, and that will be the first "pee and eat time" of the day. I have gastroparesis, so I have to eat my specialized diet about every two hours. They have to help me on and off the toilet, get my food prepped for me, and then get me back in bed once I'm done. the whole process takes about half an hour, and I am in a lot of pain and very exhausted by the end of it. and before you ask:

Yeah, it's pretty humiliating. I won't lie.

The rest of the time, I am just laying in bed. I try to sit up with my bed and spend time on my computer (hello, doing that right now) for short periods but it's not long before I have to lay back down again. I watch a LOT of Youtube and tiktok, and listen to a lot of music. it's really boring and lonely honestly. I am always super grateful when my partners come to visit me or I can video chat with people. helps alleviate the FOMO a little bit. 

I'll keep posting about my experience as a disabled person, because maybe it will raise awareness or help someone like me feel less alone <3

~Silvey~