You would think it’s common sense that fatigue comes with a chronic illness, but some people don’t really understand. Right now, as I’m writing this (from bed), I want to go to sleep. I slept through the night, went to bed on time and woke up after my alarm went off. When I woke up, I felt drugged almost. All day I fought to keep my eyes open. At work, I went to the bathroom to pee and closed my eyes for a second and almost dozed off. True story.
I’m not in a flare up right now, but I’m not in remission, meaning I still have active disease. I don’t have the same levels of energy as normal people. You would think that is obvious, but sadly it’s not. Also, please don’t suggest that I just need more sleep. No, that’s not it. Crohn’s Disease is an auto-immune disease, meaning my own body is fighting me. I’m at war with my own body EVERY SINGLE DAY. It’s exhausting.
I also suffer from anemia, another side order that comes with the main entree of Crohn’s Disease. I see a hematologist and get iron IV infusions to bring my iron levels up. It helps, but if I have active disease I’m never going to be 100%.
I just have to know my limits. I need to know when to take a step back and relax. Not always the case, but I try. Again, getting more sleep isn’t the answer. I just have to ration the energy I have. A lot of people use the spoon theory to explain this. This is where the term “spoonies” comes from.
In the past I’ve managed to be physically active, even with active disease, but sometimes that isn’t always the case. It’s been almost 17 years and I’ve adjusted to a life with limitations. Sometimes I can do it all and other times I can’t. How do you handle fatigue? You manage your life around it somehow. On a day like today I went straight home. If I had any plans I would have cancelled them.
Driving home was a challenge, I may have taken a few yellow lights just to get home faster. The thought of collapsing in bed kept me going those last few minutes. As soon as I got home, made myself something to eat, changed and fell into bed, I didn’t fall asleep. Surprise! Like I said, more sleep isn’t really the answer. But just laying in bed not having to worry about ANYTHING made me feel ten times better.
I’m not lazy, my body is physically depleted and I have zero fucks to give about anything. There are casualties to the war that wages on inside my body, and my energy is victim number one. Drinking a cup of coffee or getting more sleep isn’t going to help, so I know you mean well, but please stop suggesting it.
There’s no simple answer here besides achieving remission. I just have to try and continue to manage my fatigue. Time for a nap.
