I’m laying in bed, begging my brain to go to sleep, but my thoughts are too focused on the hundreds of tasks left undone. The laundry that still lies, unfolded, in the basket. The dishes that still sit, unwashed, in the kitchen. The table, covered in papers and crayons, that needs to be cleaned off. The floor, sprinkled with dirt, that need to be swept and mopped.
But here I sit, not doing any of it. And it’s not because I don’t want to do it. Because I want, more than anything, to have the strength and energy to get everything cleaned, put away, and organized. But I can’t. My body physically can’t do it. The pain I feel on a daily basis. Hour by hour. Minute by minute. Second by second. The pain destroys me. Little by little, the pain pecks away at my joy and happiness and excitement. The pain steals my abilities from me. The pain is a slow and silent killer.
I don’t even know how many times I’ve been told, “it can’t hurt THAT bad,” or “it’s not even possible to be in that much pain all the time,” or “just think positive,” or “be more active,” or “it only hurts that much because you let it.”
Most people, if they can’t understand something, will deny what you’re going through. If it makes no sense to them, then it must not be an issue.
Chronic pain. “Well, at least it’s not cancer.” “You’re so lucky that you get to lay in bed all day.” “It must be nice to be so lazy.”
I would literally give anything to have my life back that I had four years ago. I was able to run. I could lift. I could eat. I could enjoy my life. But my health took a downward spiral. Surgery after surgery after surgery…each knife has taken more from me than the previous one. And now, I’m painfully holding on to my ability to walk.
I look back at my life and I think about all the times I took my body for granted. I used to be a runner. I used to be a personal trainer. But Ehlers-Danlos Syndrome took that from me. The constant pain takes a mental toll over time.
I’ve always struggled with depression and anxiety – I think, for as long as I can remember. But as I entered adulthood, I seemed to be able to control it. Running and working out helped a lot also. But after a while, I was in constant pain, so I finally went to the doctor. That’s when I was diagnosed and subsequently had multiple surgeries. After 3 years, I regret almost all of the surgeries I have had. I’m in more pain now than I ever was to begin with. Most days, just walking has me on he verge of tears.
I don’t know what I’m supposed to do next. I can try another surgery or I can take pain meds. But nothing will ever actually solve the root of the problem.
But I’m the midst of my pain, I’m also a mom, a wife, a daughter, a sister, a friend, an employee, a coworker. I’m a lot of things to a lot of people. But sometimes, I’m in so much pain that I can’t be anything to anyone.
Thankfully, those closest to me are understanding. They accept me even when I can’t get out of bed because the pain is so high. My kids have had to be more mature than others their same age because of the things that I’m unable to do. I can only hope that as they get older, they’ll understand the value of their health and of their bodies.
I just don’t want to hurt any more. I don’t know what I’m supposed to do next. I don’t know how I’m supposed to keep up with life. I just wish there was something to look forward to. But I know that I will never in my life get to experience a day without pain.
So now what….