The Curse of Going to Bed
“How blessed are some people, whose lives have no fears, no dreads; to whom sleep is a blessing that comes nightly, and brings nothing but sweet dreams.” -Bram Stoker
As someone who has never slept all that well throughout my 31 years of life, I acknowledge I’ll probably never have the sleep cycle of an “average” person. As someone living with Crohn’s disease, I have had to accept that going to bed at night almost always never really goes the way I plan. As someone who doesn’t sleep well and whose number one indication of a bad day is little to no sleep... I could write a book on the reasons I have a complicated relationship with sleep.
So why do I hate going to bed with Crohn’s?
A number of reasons, really. My IBD tends to sneak up when I’m getting quality sleep – usually around the hours of 1-4am. Not ideal, right? As a person who struggles with immunity to germs and bacteria, I acknowledge how important proper hygiene is for my health. And yes, sleep hygiene is included in that. (Yup, it’s a thing, look it up!)
The #1 reason I hate going to bed with Crohn’s is knowing I’ll wake up and still have it. The hardest part is not knowing what it will do to me that day.
I struggled with that first part for far too many years. And I’ll be honest, I still do. My Crohn’s has felt like a shadow to me for the last 14 years. It follows me everywhere I go. There are times I don’t see it; like it’s a ghost. And other times, where it could not be more obvious to me, and to others, that I am having an extremely difficult time.
I sleep so poorly. There are nights when I am in so much pain and I know that going to bed will make it 10x worse. I know it because it happens often. So, a few years ago, I began a very strange sleeping pattern that has helped me a little, but in the end, I always end up paying for it.
My sleep pattern
On really high pain nights, like when I am having 9/10 joint pain, I know sleeping does not go well and usually, I wake up and it’s terribly worse. That BLAM! feeling when you wake up and think an imaginary garbage truck somehow came through your bedroom walls and just completely steamrolled you while you slept. Is the pain worse when I wake up than when I went to bed? I’m not sure, but I can definitely tell a difference.
How has sleep changed your life living with illness and how do you proactively fight this issue?
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