Unapologetic and Living With Chronic Pain

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It’s been with me for so long that I forget who I was before my Chiari diagnosis. The pain-free, care-free days are behind me. I have enough pain meds too embarrassing to say. There are days I want to go on without them – and feel human.

As time has gone by I’ve realized how much time I’ve spent trying to make others understand the depth of my chronic pain. I can’t change the way people perceive my illness, my diagnosis, my feelings, my physical limitations, nothing! The ‘ole ‘but you don’t look sick’ gets old quick. I know myself, what my day to day looks like, and I, myself know exactly what I have to live with – and that is enough.

There’s are certain feelings of guilt that come with chronic pain. The guilt of not being the mom I want to be, the wife I want to be, the daughter, friend, etc. and not living to peoples expectations of who they want me to be.

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I am not physically able and available and that is nothing I should continue to be ashamed of. I can’t be present in others lives as much as I’d like – or at all. I am physically unable to do many things, and only desire to push myself to my limits for my children, my family – no one else. Others expectations should not affect me, the Instagram worthy pictures of family outings should no longer tug at my heart, yearning those days to return to my own life. This is my perfect life, I am perfectly chronically in pain and will continue to be until my days end. I’m not sorry for others not understanding what I live with. I’m only sorry I’ve spent so much time convincing them my words and behavior are due to the constant struggle of battling with chronic pain while being positive. I will not allow others to cut me with their words. There is no need for excuses, I’m struggling and I don’t owe anyone an explanation for my absence.

Because no one is worth allowing them to break me down.

Happy Saturday.

A-

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Mom Life With Chiari

Living with Chiari 1 Malformation and Syringomyelia since 2013.

37 thoughts on “Unapologetic and Living With Chronic Pain”

    1. Oh so sweet! Thank you so much. Likewise, your journey has been tough, but your perseverance has been admirable.

      And life’s not peachy and full of roses – many times it throws curve balls, and that’s just life. But we get through it, we fight through it.

      Read a quote today, “storms make trees take deeper roots.”

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  4. Amen to that! It’s so hard when something isn’t visible and obvious, and it’s harder still because I think with chronic illness and chronic pain you can never really ‘get it’ unless you’ve experienced it yourself. “I’m only sorry I’ve spent so much time convincing them my words and behavior are due to the constant struggle of battling with chronic pain while being positive” < it's difficult to navigate, knowing there's so much people won't understand, and it's probably hard for some to believe it, especially if you 'look fine'. Guilt is a big factor for me, too, and I guess that's a continual work in progress. But you're absolutely right, you/I/we shouldn't have to feel the need to explain; life with chronic illness and chronic pain is damn difficult enough as it is!
    Sending hugs  ♥
    Caz xx

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  6. Your words are very strong, and I understand every word.
    I don’t believe my chronic pain is as bad as yours, but it still limits me on a daily basis.
    What you said about not being able to be the mother and wife you want to be, and that you have to limit yourself and live with those limitations really spoke to me.
    It’s hard enough to stay positive without worrying about trying to make other understand your boundaries.

    Thank you for sharing your story.
    May the pain meds work for you today and everyday! And May your children and husband understand and be patient with you! And vice versa.

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    1. You’re welcome. Thank you for your comment, it’s encouraging. We hold the pain, we don’t look sick, but we ourselves know that we can only hold the pain inside for so long before our bodies break.
      Yes, the limitations to do the everyday things is enough to make me feel inadequate. But those are also lies. God continues to work in me, He’s helping me have love and patience for this body of mine.
      I’m on a new pain med – which is working with the pain, but it makes me so drowsy. It’s enough to make me nauseas if I don’t sleep.
      Thank you again for your response, unfortunately but fortunately as well, I’m so glad to know there are others who can relate. 😌🙏🏽

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  10. Amen Ana…………..amen! It is hard to finally get to a point that you just don’t care explaining it to others……….some people just don’t want to get it. Use your precious energy on those who deserve it. 🙂 It took me way TOO long to figure this out.

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    1. Wendi! You’ve been in my heart. I received your sweet card yesterday. What a sweet gesture, praise God because He knew I needed you to remind me that aside from my chronic pain – I’m a good mother. That He’s getting me through it all. 🥰🙏🏽
      I love that, ‘use your energy on those who deserve it.’ YES!

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  11. I’m feeling the exact same way today after going to water park with family and I couldn’t fully participate with my son as I wanted to. Glad that I have supportive family. But I also hate that I have to wait on others, and cant do alot of physical things with my son. I’m sure he hates it too, not to mention I’m a single mother.

    On Sat, Jul 27, 2019, 5:52 PM Mom Life With Chiari wrote:

    > momlifewithchiari posted: ” It’s been with me for so long that I forget > who I was before my Chiari diagnosis. The pain-free, care-free days are > behind me. I have enough pain meds too embarrassing to say. There are days > I want to go on without them – and feel human. As time has go” >

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    1. I can relate so much! Yes, I understand. My daughter is learning how to ride a bike and I’ve been home on the days she goes out to practice. She doesn’t voice it, but I know she’d like me to physically be there to see her. What a pivotal moment that is for her?! It’s giant! I will push myself, but I also have to choose which to do that for, because my body will need days to recover.

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    1. Thank you so much! Yes, I know you can relate, thought about you so much with this one. It had been on mind and had gone back and forth as to whether to write my feelings down. Don’t want to be ‘Debby Downer’ or anything 😏 But so glad I did!
      Thinking of you always! 😊

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