Living with Chronic Pain
Part Two: Debilitation and Loss of Autonomy
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.
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!
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
[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.]
About the author
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