Category Archives: Chronic Pain

When the Pain Wins

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….

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My Life With Chronic Illness

Last year, I was diagnosed with Elhers-Danlos Syndrome (EDS). EDS effects my body’s college production and leaves all of my connective tissues – mainly my joints, feeling weak and hypermobile. I’m constantly in pain, and yet I get accused of being whiney or dramatic.   
I have had joint pains my entire life. As a kid, I was told that it was just growing pains. I learned to understand that being in pain was just my normal, and I didn’t know for a long time that it wasn’t normal for everyone. I have already undergone 4 surgeries and have at least 1 more surgery pending. 

  
Most recently, after 6 weeks of intense headaches and random vision disturbances, I went to the eye doctor for a routine eye exam and he sent me straight to the ER. My optic nerves were swollen and bleeding. The last few days have been a whirlwind and I received a diagnosis of pseudotumor cerebri (PTC). With PTC, my brain is essentially reacting like I have a tumor, but there is no tumor. I’ve had two ER visits in the last 48 hours and have lost part of vision (hopefully only temporary). 

  
I feel like there’s something wrong with me. I keep asking why this is happening to me. I ask why I’m in so much pain. But no one can really tell me….it’s just the luck of the draw.

  
Chronic illness and chronic pain are miserable. No one understands it. People think I look fine, so I should feel fine…but most of the time I feel like I’ve been hit by a bus. 

  
Today, I’m in incredible pain from a lumbar puncture. I want to feel “normal” and not be in so much pain. I want to function at my normal level or productivity…but I simply can’t. 

  
Some days are good and some days are bad. I feel like my life is like a wheel of future, I never know where it’s going to stop. 

  
I often have to cancel plans with friends because my pain level gets too high. Or I struggle to get out of bed because it hurts to move.

  
So, I ask you to stop thinking I’m whiney or dramatic and understand that my life is much, much different than yours.


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