Lately I’ve been struggling with chronic pain in my joints. I’ve dealt with migraine pain before and I’ve had car accidents but in those situations I’ve had some sense that there would eventually be a reprieve from the pain. I don’t really know what’s causing this and I don’t know when it’s going to end. I don’t know a lot of things, but when people ask me what chronic pain feels like, this is what I have to stay.

On Again Off Again

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For me, the pain comes and goes. It goes and I get hopeful and I get optimistic and I end up left feeling like Taylor Swift. I feel very let down and like that brief window of comfort was a promise that was not kept. I get excited about the reprieve and start making plans and then the hope of more comfortable days gets ripped away and I feel jilted. I want to be in a relationship with the feeling that my knees aren’t giving birth through my kneecaps all the time.

I’m Fine (ok I’m not)

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At a certain point, I get tired of listening to my own whining. So when you ask how I’m doing, I will probably tell you I’m fine. I’m fine, I’m fine, I’m fine, I’m faking it because I really am tired of talking about it. I feel like that scene in When Harry Meets Sally, like I’m faking it and I hate it but I also hate whining about it. I am not a pity party planner.

 Limits

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One of the “joys” of chronic pain is finding the things I used to be able to do that I can’t anymore. I feel like a fish bumping up against the glass of an aquarium, discovering its edges through trial and error. It’s incredibly frustrating being unable to project from one day to the next what I’m capable of and what I can accomplish. Chronic pain is perpetual disappointment. Remember how far you used to drive? Nope. Remember high impact activities? Nope. Remember standing for long periods? Nope.

 Humility

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I am an independent woman. I don’t like asking for help at all. Chronic pain means sometimes I need to ask for help. When I find the edges of what I’m capable of, sometimes I have to call in reinforcements to get things done. I feel like a bother. I feel weak. I feel needy. I feel embarrassed that I am always asking for help but I know I need it so I ask. My awesome partner bears the brunt of it most of the time and never complains. For that I’m grateful.

 Skeptics

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The worst part is when I do finally ask for help, the nature of invisible illness is that people don’t always believe it. I seem fine. Most of the time I say I’m fine. But if I say I need something, I really do mean it. I’m not being lazy. It’s not that I don’t want to do something. It’s that some days, I simply can’t. I know I used to be able to, but unfortunately, that doesn’t mean I can do it today. Chronic pain is feeling like nobody believes you.

Insomnia

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Comparison might be the thief of joy, but chronic pain is the thief of sleep. Whether it’s a dull ache or something sharp and stabby, it’s impossible to sleep with the constant nattering of my body. I can’t sleep and then I’m tired the next day trying to function and the fatigue amplifies the pain. It’s like a pyramid scheme that bankrupts you with crippling sleep debt.

Numbness

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Physical numbness would be a blessing, but dealing with chronic pain means I’m not able to feel the full range of emotions. I’m too tired to process joy. I’m too achey to feel happy. Chronic pain numbs everything but pain itself and it’s frustrating.

Impatience

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Ain’t nobody got time for chronic pain. Being uncomfortable greatly erodes my frustration threshold. I am testy and antsy and irritable. I don’t wait well with others. I am seriously cranky and bless my family for putting up with me when I get that way, all snippy like.

No Heels Allowed

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I used to wear really pretty, sexy shoes. I wore delicious high heels that made me seem much taller than my five foot two frame. Now, when I wear them I’m like a drunken adolescent moose. I can’t do it anymore. I look like I’m staggering. I’m exploring a whole new world of flats and I miss my peep toe stilettos like the deserts miss the rain (thank you, Everything But The Girl, for that apt expression.)

 Sensation

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My pain feels like a bear hug from a cactus. It’s like a thousand paper cuts on top of mosquito bites with salt on every wound. It’s an ache that nags like a child who won’t accept “I don’t know” as an answer. Sometimes it makes it hard to breathe and I feel suffocated by the way it takes over my body.

So that’s what chronic pain feels like. That’s what my chronic pain feels like, anyways. It hurts a lot, but it feels better knowing someone hears what I have to say. I don’t know why it’s there and I don’t know how long it’s going to last. Until then, let’s just say I’m fine, but please believe me if I say I’m not. 

7 Comments

  1. I’m so SORRY you are going through this. I hope you can find some relief. If you want me to help you look for homepathic remedies I’m happy to help you try! I too deal with some serious issues, and diet and acupuncture have helped me cope. Sending you another big hug.

  2. I’m so sorry you’re having to deal with this. I’m sending lots of good thoughts that you find a solution that helps give you more “off again” than “on again” times. xo

  3. Nobody deserves to go through this. I am sharing pieces of my experience in case it helps you approach your challenge. Obviously you can see my email even though not public, so if you just want to vent to someone else who is going through the process of changing my life to match my new limitations, please do feel free.

    After years of chronic pain, I finally got a diagnosis. Well, a sort of diagnosis. Enough of a diagnosis to narrow down options and get medical treatment, which has made all the difference. One thing that would have helped accelerate the process is keeping a diary of activities, sleep, and symptoms. Not so different from a migraine diary.

    The silver lining for me is that after realizing how much stress triggered symptoms, I finally found a way to let go of things that don’t matter. I had been trying all my life, but couldn’t make it happen. It took my body shutting down under stress to make me let go. (For example, not having a definite diagnosis no longer bothers me as long as the medications are helping.)

    Another thing to keep an eye on is your mental health. Chronic pain rewires your brain and you wrote a little about how that happens to you. Seeing a mental health professional can help you identify if treatment may be helpful as you navigate this chapter.

  4. Oh my gosh yes. Yes, yes. Yes. This is what I go through every day. Oh my gosh. I will say that since I eliminated gluten and dairy, and most processed foods, I am getting a bit of a reprieve. But there were MONTHS upon MONTHS that I didn’t get any relief. I’d be hobbling around, and people would ask, why are you limping? I got tired of answering.

  5. Oh friend. I’m so sorry you have to endure this way of life. I often fall ill, from apparent Gluten Intolerance, and I can be down for days- I LOOK fine, but I am suffering greatly. I understand this. You described it PERFECTLY.

    I hope and pray it DOES get better and you have more moments of relief that give you hope and peace. I know exactly how you feel. Hang in there, sweetie. And for the record, I believe YOU. I get it. And I’m here if you ever want to talk. XO

  6. “It hurts a lot, but it feels better knowing someone hears what I have to say.”

    I completely understand. My father founded a company to deal with chronic pain with non-invasive therapy. His comment I heard most frequently when I was in high school was: “I get exhausted from caring as much as I do for everyone.” He knew how overwhelming the constant on-one-day, off-another pain was for people.

    I learned a lot in this article and I LOVE the setup of your site. So much so, that I wanted to tell you.

    Keep fighting the good fight. Peace to you!

    – DDM

  7. “Drunken adolescent moose” i literally laughed out loud. Yeah, i used to wear those heels too!
    I too am so sorry you are dealing with chronic pain. Must be very hard being a mom of a young child when you have that pain. But, i am glad you have a support system.
    Thank you for so accurately describing the feelings surrounding chronic pain and “invisible illness “. So often, my automatic response of “fine” is a lie. But, i get so tired of thinking about, it, let alone talk about it.
    Like you, my frustration tolerance is way low, i am sleep-deprived, irritable, cranky, and in pain so much of the time. Not a good combination when i work in a chain retail pharmacy-having to smile and be pleasant all day, when i just want to smack people in the head! 🙂
    What I also feel is grief, for that which I can no longer do and for the woman i used to be; and, anger-why me? How is this fair? Fear of an uncertain future…And a whole host of other emotions-That are Hard to experience and hard to write about.

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