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Living with Chronic Pain

by Harmony Kent 2 months ago in health · updated about a month ago
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Part Two: Debilitation and Loss of Autonomy

Living with Chronic Pain
Photo by Nathan Dumlao on Unsplash

Hi everyone! Welcome to Part Two of my Living with Chronic Pain Series. If you missed Part One (Getting Yourself Out of Bed), you can find it HERE. That first post received so many wonderful comments, and more than a few of those mentioned debilitation as one of the major aspects of living with chronic pain. So, in this article, I would like to take a deeper look at what that means in everyday life.

Vocabulary.com tells us that Debilitation: 'seriously affects someone or something's strength or ability to carry on with regular activities.'

Often, this means the debilitated person needs help from another to carry out even the most basic daily activities of living.

At the time of writing this piece, Earth's population numbers 7.96 billion. Each and every single one of those almost 8 billion people is unique and has their own way of doing things, as well as individual preferences, likes, dislikes, and abilities, etc.

Herein lies a huge potential for the loss of autonomy and choice for anyone who suffers chronic pain and needs a helping hand because of it. All too easily, this can turn into a 'get what you're given' scenario.

By Edge2Edge Media on Unsplash

Throughout my life, a phrase I've heard often is: 'If you want something doing properly then do it yourself.'

I'd prefer to tweak the 'properly' to 'how you like it'. This is because a thing done differently doesn't, necessarily, mean done incorrectly. For instance, I prefer my coffee weak and white while dear hubby goes for black and strong every time. When we first got together, neither one of us enjoyed any coffee either one of us made for the other. It took time for us to grow together and get to know one another for us to 'get it right'. Hence the picture at the top of this page.

Being an independent person by nature, and used to being the one doing the helping and giving, I find it excruciating to have to rely on other people for anything. For certain, I would much rather get on and do things for myself. However, because my pain has become so extreme in recent months, I have had to adjust my expectations massively. Which also means having to let go of being particular about what I want or prefer.

This is where things can get real complicated. When someone does me a favour and helps me, especially when I've asked for that assistance, I'm supposed to feel grateful ... right? And I do. I so do!

However ...

If my helpmate brings me a strong black coffee (to continue our earlier example), which turns my stomach, after I asked for weak and white, I'm more likely to feel frustrated, disappointed, and trapped. Then come the feelings of guilt and remorse. After all, the person is doing their best. And I end up feeling like the child in the box in the picture above—doing my utmost to reach out and communicate and feeling as though I'm failing all the time.

Some people are more empathic than others. Human beings aren't always good at listening or remembering. Or expressing themselves, for that matter. In my experience, chronic pain and fatigue scramble my brain and make it almost impossible for me to articulate adequately ... and this from a woman who writes and edits for a living. Who used to have a near photographic memory. Now, I lose words and the ability to describe and/or find alternate ways of saying a thing.

I think most of us would agree that, in normal circumstances, it's easier to get up and retrieve a particular object from a certain storage place than it is to try and direct another person to said object. It can turn farcical and reminds me of the kid's game of Hot and Cold I used to play where I'd tell the seeker 'warm', 'warmer', 'cold', or 'colder', etc., as they searched for whatever I'd hidden.

A thriller novel I'm reading, about self-driving cars, shows us that the main character isn't too impressed with such technology. Having woken one morning, tired and horrified at her reflection in the mirror, she tells herself:

'When they invent a face that will do its own makeup, that's when I'll really give a shit.'

[From Look Both Ways by Linwood Barclay]

This had me laughing aloud. It resonated with me. These days, I don't bother with makeup as it's too much for me to cope with, and I definitely wouldn't cope with anyone else trying to apply it for me. Especially when it's only hubby and me in the house! Honestly, it was bad enough on my wedding morning having the beautician and hairdresser messing with me, lols. So, yeah, if only my hair and face could 'do themselves'! If only my coffee could make itself. If only my plate could magically carry itself from the breakfast buffet in the hotel to my table, fully laden with all the food I love.

If only ...

But life doesn't work that way. Whenever we need to rely on someone to 'do for us', that usually means accepting what comes ... or doesn't come. And herein lies one of the great ironies:

Patience is essential.

But, as I mentioned in Part One, '... when all your energy is focused on just coping, you have little patience or brain space remaining to deal with any other stressors, no matter how seemingly minor.'

In this boiling pot of conflicting emotions, practicing patient forbearance can feel impossible at times. I've lost count of the number of times I've lashed out. And I hate myself a little more every time I do it … because I know better. Until I experienced chronic, severe pain, I had no idea how much that would challenge me on a deeply personal level.

Countless times a day, I have to forgive myself as well as those around me. I have to remember I'm only human, as is everyone else. It's important to do my best to see beyond my prison of pain and recognise how much my husband does for me. How patient he is with me. How understanding he is. Not to mention how much I do for myself and cope with. If I'm not careful, resentment (of my body, my situation, and of my companions) will come to rule the day, and that leads only to disaster. Gratitude is my saviour.

Gratitude and patience.

Oh, and a HUGE sense of humour!

It’s hard to laugh when I hurt and feel exhausted. But, oh my goodness, how much it helps! So much. And many times these days, I end up crying and laughing at the same time. That’s okay. Right now, I’ll take anything that helps me feel that little bit better.

Along with these three things, I also need to identify and accept my own limits as well as the limitations of my companions. Such acceptance includes allowing for impatience, lashing out, depression, resentment, anger, and making mistakes. I need to recognise and allow for the effects of any pain medication I’ve taken, too. The ups and the downs from pain killers can have a significant impact on my physical reactions.

I wanted to talk about these aspects here because, all too often, shame, frustration, and feelings of failure prevent us from the honesty that's needed to admit to all of our conflicted feelings. And if we can't talk about it, we can't apologise, accept, or come to an adequate understanding. In Parts Three and Four of this series, I plan to look at judgement from others and communication. It's interesting to be breaking these articles down into separate parts as, essentially, every aspect of living with chronic pain gets all tangled together. Unfortunately, that makes for a topic far too wieldy to tackle all in one go.

It is my sincere hope that by sharing my personal experiences, I may help anyone who lives with chronic pain, or who cares for someone going through it. To know I'm not alone is invaluable.

I’d love to hear from you in the comments below.

Thanks for reading, and I look forward to seeing you in Part Three! Hugs, Harmony 💕🙂

© 2022 Harmony Kent

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[DISCLAIMER: Harmony Kent is not a medical or health professional. All content and media in this Vocal piece on Living with Chronic Pain by Harmony Kent is created and published online for informational purposes only. It is not intended to be a substitute for professional medical advice and should not be relied on as health or personal advice.

Always seek the guidance of your doctor or other qualified health professional with any questions you may have regarding your health or a medical condition. Never disregard the advice of a medical professional, or delay in seeking it because of something you have read on this page.

If you think you may have a medical emergency, call your doctor, go to the nearest hospital emergency department, or call the emergency services immediately. If you choose to rely on any information provided on this page, you do so solely at your own risk.]

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About the author

Harmony Kent

Harmony Kent began writing at 40 after a life-changing injury. An avid reader & writer, Harmony also offers reviews and supports her fellow authors.

You can find Harmony at https://harmonykent.co.uk

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  • Robbie Cheadle2 months ago

    Hi Harmony, you have explained very well the difficulties of being reliant on other people for certain things and how you have to shift your expectations. My mom is currently having to scale back on a lot of things she used to do because she brings a lot of pain on herself when she overdoes it. She is finding it very difficult and it is making her resentful and difficult to live with so I do understand what you are saying and how you need to try to avoid becoming bitter and pushing people away.

  • Yvette M Calleiro2 months ago

    You express it all so clearly and so honestly, Harmony. Thank you for sharing your truth. :-)

  • Michele Jones2 months ago

    Truly an experience that no one can share with you. What you experience will be different from what others experience. Not to mention, that if you haven't experienced chronic pain, you honestly cannot relate. You may think you can, you may be sympathetic, but you don't know. Being helpful is a kind gesture, but if you choose not to listen it isn't always helpful. We as a society are quick to think we know and understand, but we need to take a step back to listen and to learn. Hopefully the pain will get better without so many side effects that make you crazy, loopy, or frustrated.

  • Cheryl Oreglia2 months ago

    When it comes to writing, I find it difficult to create when I'm in either physical or emotional pain. I can write, but it comes out with a jagged flow and angry images. Although I admit that is sometimes the key to healing. I appreciate your honesty, Harmony, and your willingness to share your experience with others. This is how we realize we're not alone in our pain and suffering. Hang in there, wrapping you in love and hugs, C

  • D.L. Finn2 months ago

    Thank you for sharing the emotions and how they are expressed behind the pain. I'm already terrible at both and when I dealt with my pain and health issues, it was even harder on those trying to help me. It is a lesson in patience and gratitude as you say and so important to talk about so we don't feel bad at our reactions on either side.

  • Jan Sikes2 months ago

    I love the honesty of this piece, Harmony. The fact that we all do things differently certainly comes into play when you need a helping hand or find yourself being a caretaker and lending a helping hand. I remember one morning, after Rick had become bedfast, that I lashed out and felt so horrible I cried the rest of the day. I was trying to get ready to go to work, and he asked for something. I can't even remember what it was now, but at the time, it was just one more thing I didn't have time to do. It was something I never repeated again. You bring out so many emotions in this piece of writing. Thank you for sharing!

  • John W. Howell2 months ago

    Although my pain is nothing like yours I have lived with it since childhood. Your discussion is important to remind those who suffer that there is no one in the world who can really feel what the sufferer feels. Yes, they can empathize but have no idea what it really means. Because of this well-meaning gestures sometimes have an unintended result. Hopefully, they come to realize that any reaction by the sufferer is not directed at them but to the condition. I have been lucky that the medical advancements have eliminated most of my problems and have resigned myself that the rest will stay. You are the bravest, Harmony and do more than anyone with your challenges could be expected to do. My wish would be that somehow you find relief for your pain.

  • Priscilla Bettis2 months ago

    I had never thought about chronic pain messing with a person's ability to express themselves, find the right words, and describe things. It makes sense, though. Good article, Harmony. Thanks for the insight you've given your readers.

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