When pain becomes chronic …

General 2 Minutes

Pain.

It’s such a short word that encompasses so many things. Before Stage IV Metastatic Breast Cancer (MBC), I’d experienced some amount of pain. I got into a few car accidents. Dislocated a wrist. I’d had braces, twice, along with some dental surgery. When no longer very young, I had two c-sections and a 26 hour labor before getting said c-section, not to mention the two pregnancies and four years of breastfeeding and pumping.

And none of that prepared me for the pain that I now live with 24/7.

Each of the types of pain I’d encountered in the past had a beginning, middle and an end. While some of the birthing pains I experienced (back labor is particularly painful) were pretty eye-watering, the labor did come to an end. Yes, I have some twinges every now and again in that wrist I dislocated long ago, but nothing significant.

Now, I never know what my day will be like until I stand up. With medication (oral and topical) and stretching and massage and exercise and soaking in Epsom salts and heating pads and acupuncture and so many other things I’ve had to incorporate into my daily and weekly routine, I am usually able to manage most of the physical symptoms.

And I still spend some days in bed — I get up to take my boys to school and head back to bed to rest until I pick them up.

I’ve learned more about not pushing myself, not spending all my spoons on unnecessary activities so that I have some energy left for those boys who never sit still. I’ve learned not to be shy about asking for a wheelchair or assistance when we go places. I’ve learned not to avoid driving our golf cart in our neighborhood rather than walking, as was my habit previously. I look for chairs and places to rest when out and about.

I’ve learned to navigate this physical pain that will never leave.

But what is so much harder to navigate are the psychological impacts. Pain management doctors rarely talk about how pain is not just physical. It’s not too difficult to get pain medication prescribed for physical pain and to get a crash course in managing opioids and other medications that have other and often lasting side effects than just tricking our brains into not feeling the physical pain. What these same doctors often overlook is that there is an element of living with pain that has nothing to do with the actual pain itself.

When pain is chronic, you have to adjust your entire like to accommodate it, to manage it.

When pain is chronic, there is no escape from it, it is your constant companion.

When pain is chronic, there is no light at the end of the tunnel.

When pain is chronic, it can take over your life.

When pain is chronic, you make different choices, you have different priorities.

When pain is chronic, your world shrinks.

When pain is chronic, there is often no room for anything else.

When pain is chronic, your decision making is horribly skewed.

When pain is chronic, you become a different often unrecognizable person.

When pain is chronic, you push away the people who are trying to help.

When pain is chronic, the pain becomes your whole world.

When pain is chronic, choices that seemed illogical and inconceivable become seductive.

When pain is chronic, you need different care.

Published by Abigail Johnston

I'm a daughter, a wife, a mother, and I've been living with Stage IV Metastatic Breast Cancer since March, 2017. All of the words I publish are my own.

Published

25 thoughts on “When pain becomes chronic …”

  2. Yes. My father has gone through a number of significant waves in his life where he has experienced chronic pain and this piece really helps me understand from his perspective. His chronic issues and pain give me insight into your unrelenting pain. Sending peace, light and hugs to help you through.

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  4. Wow does this hit home. Up until this year my side effects and the pain associated with it were non existent. This year has been a roller coaster and the guilt that follows me is almost as bad as the pain. Laying in bed vs going to the fair, sitting vs helping with dinner. Those moments eat at me. I appreciate you putting this into words.

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  5. Pain stinks! I’m sorry you are going through this. In my own pain I have become open to additional helps. Not quakery but alternative medicine from licensed professionals. Acupuncture helps me a lot. I did research first! It sends signals to your brain to release healing hormones which is a huge blessing. It is not a cure though. Just an idea. Blessings.

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  6. Hi Abigail,

    I’m sorry you have to deal with so much pain. Never knowing what the day will hold, pain-wise, has to be so hard. Sometimes, cancer patients think they have to remain stoic. And that darn pain scale…Don’t get me started. Do they still use that for mbc patients?

    I appreciate your willingness to speak candidly about this part of your mbc experience too. Hoping you have some pain-free days ahead. Or at least “pain-light days”. Keep writing. x

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    1. They do use the darn pain scale. Now I say … this would be a normal person’s 8, but I’m at a 3. The ones who know me know what I mean, the new ppl just stare at me. My tolerance is so different and I manage my pain in lots of different ways. ❤️

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  7. Yes the pain scale of mediocrity left me as unsatisfied as watching the beloved cone of indifference predicting where on the eastern seaboard or the gulf states a hurricane might land.

    For the first time I had to call the airlines and request a wheelchair and curb pick up with my bags to whisk my body off to the gates but first through security. Im 56. People will stare.

    My body requires more sleep but my legs have a very ugly and incurable tendon neuropathy from being on aromatase inhibitors for almost seven years. Yea I’m okay with being here still. But the pain sears my feet and legs sending me flying out of a deep sleep out of bed and walking it off breaking tons of good nights in half or worse and leaving me exhausted. Its moved to my hands causing severe cramping in both. This keeps me up reading and answering blogs. But this one rang true and hit home. Waking up some days is even a chore I can’t handle but must do to accomplish anything besides feeling guilty all day.

    I’m sorry you’re in the pain pool – not in the least thrilled to swim together there
    Love you
    See you soon!
    Ilene

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  10. Yes yes yes! I feel so guilty coming back from dropping off the kiddo and sleeping until time to pick her up. I also know the awful feeling of standing up and wondering what will be your biggest pain challenge each day. I agree with every word of this. ❤️😢❤️

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