If you read my distractions post, you’ll know I’m keen on A – Zs, so I decided to make an A – Z to describe what life is like with chronic pain.
Counteracting Negatives with Positives
Partway through writing this, I realised that the A – Z was quite negative so I decided to balance it out a bit more. I have used a positive and a negative example for each letter.
A – Z of Life With Chronic Pain
Anti-social
Chronic pain sufferers are sometimes considered to be anti-social. When pain is bad, they’re not up to socialising. And when their pain isn’t so bad, they’re afraid that socialising will worsen it.
Abilities
I like this word. We have to focus so much on disabilities, that sometimes we forget what we are capable of. Focusing on our abilities can be more uplifting.
Betrayed
We are betrayed by our broken bodies.
Breathe
We all do it. We’ve done it since the day we were born. But there are techniques that can help us to cope with pain.
Cranky
Who doesn’t get cranky on the odd occasion? Most people do. When you wake up every day in pain, crankiness can reach new levels.
Coping Techniques
Breathing, meditation, mindfulness, yoga or distraction. It’s beneficial to have a wide range of coping techniques at our disposal.
Demoralising
It can be demoralising waking up every morning knowing that pain will prevent menial, everyday tasks.
Dreams
Remember the song “Happy Talk” from South Pacific – “If you don’t have a dream, how you gonna have a dream come true?” Our dreams belong to us and we can actually change them to suit our circumstances, just don’t let them go completely.
Expensive
Any type of chronic illness can be expensive to live with. Many countries do not have free health car and many people cannot afford to pay for doctors, medication or surgery.
But health care is only part of it. You may want to try alternative therapies or you might need special equipment to help you or make adaptions to your home. And when you’re at home due to illness, you normally need extra heating. Or you may have an illness that requires a special diet. That is just a few ways that chronic pain or chronic illness can become expensive. None of these things come cheaply.
Enjoyment
Is it still possible to enjoy life despite pain? I think it is. Pain steals so much, but I can’t let it take all the enjoyment from my life.
Fatigue
It’s not like tiredness. It’s different. A nap doesn’t fix it. A whole night’s sleep doesn’t fix it. It is draining.
Friends and family
Where would we be without them? Some might turn their backs, but the support from those who stay is priceless.
Guilt
Guilt is an emotion which weighs us down heavily. We need to learn to ditch it.
Gratitude
Finding things, even tiny things, to be grateful for can help pull us through tough days.
Hospitals and health clinics
Our social lives often revolves around trips to those places.
Hope
We need to live in hope of better treatments, better understanding and better days. And cures…we all hope for cures.
Invisible Illness
For many of us, our pain cannot be seen. Are we believed when people cannot see our pain?
Improvise
We can’t let pain stop everything, so we become quite adept at improvising.
Judgement
Some people judge and doubt us.
Jar of joy
Put happy thoughts in a jar every day, then read them on a down day.
Knockbacks
People often suffer from knockbacks. They lose jobs and friends. Even close family sometimes leave them.
Kindness
We like to receive it. We also need to give it.
Loneliness
Do you feel lonely? Many people living with chronic illness feel lonely and isolated.
Learn to Listen
Life with chronic pain means a lot of learning. My first post on this blog was about how I learned to listen to my body. If we listen and give it what it needs, life can be easier.
Mental and Emotional Health Problems
Depression, anxiety, stress, frustration and guilt are just a few issues a chronic pain sufferer can come up against.
Masks
We get days when we need to escape from our pain. Sometimes we need to avoid talking about our lives because if we opened up, we’d break down. So we wear masks. But we can wear them with style. And a smile.
Normal
We yearn to be normal. We yearn to have normality in our lives. We yearn to be like the person who lives along the road from us who lives a normal and fulfilling life.
Normal?
What is normal anyway? We are all unique and that is normal. We are normal.
Okay
The response we often give when asked how we are. “Okay” – a small word which can mean anything except okay.
One day at a time
That’s how we need to live. It’s often difficult to make plans, but if we focus on each day, one day at a time, it can be easier to cope.
Payback
If we are active on a better day, the next day we get payback. Everything comes at a price.
Positivity
It doesn’t just turn up on our doorstep unannounced. We often need to search for it. But it will be there.
Questions
We have so many, and sadly, very often we don’t receive answers. And when we do receive answers, they’re often not the answers we want.
Quiet Time
Part of a self-care routine, getting some quiet time is imperative.
Resentment
We often resent what pain has done to our lives, and resentment is a very powerful, negative emotion which can drag us down.
Rainbows: We have to look for a rainbow in a storm. And if we can’t find one, we need to create one. Even if it means singing one!
Side Effects
Sometimes side effects can be as bad as the condition.
Social Media
The inventors of social media platforms probably didn’t realise just how important their sites would become to people with health conditions. To say they’re a lifeline to some people would be an understatement.
Tears
We often shed them. Even the positive people, the ones who always seem to be happy and have it together, can have bad days too.
Tomorrows
There are always tomorrows. We can procrastinate. We can allow ourselves to put off until tomorrow, the things we can’t do today. And it’s always good to remember that tomorrow could be a better day.
Unpredictable
No two days are the same. Chronic pain is unpredictable so each day can come with its own set of problems.
Unique
Each one of us, with our own set of problems, is unique. And that means we’re special. We are, aren’t we?
Value
We have to ask ourselves what and who we value most (including ourselves), then use energy on those things or people. Our energy is limited. It’s precious. So we shouldn’t waste it.
Vent
Venting is healthy. We need safe places to be able to say what we feel. Support groups are good. Writing can also help.
Why me? Who hasn’t said that at some point? No matter how upbeat people are, there are still days when they probably just want to hide under the duvet, cry and ask, “Why me?” That doesn’t make them weak — just human.
Worthy: We are still worthy! Despite our illnesses, disability or pain, we are worthy. You are worthy!
X-rays
X-rays, scans, blood tests…the list could go on. A necessary part of our lives.
eXperts
We might have to see a lot of doctors, but we also need to become experts on our own conditions.
Yearning for Yesterdays
Life with chronic pain can change so much and we often yearn for the past or for what life could have been. But doing that often gets us down. Perhaps it’s better if we could focus on now. Do what we can today. Enjoy what we can today.
Yes Moments
It’s always good to high five ourselves when we achieve something. Whether it’s managing to pull on our own socks, or staying awake right to the end of a movie, we ought to be proud of ourselves.
Zombie
Thanks to meds, we often live with brain fog and tiredness. The zombie look really isn’t a good one.
Zest for life
Having a zest for life doesn’t mean you need to go bungee jumping every weekend. It only needs to mean that you try to wake up with the intention of enjoying the day ahead. Listen to the birds singing. Smell the flowers. Look for a rainbow in a storm.
Do any of these resonate with you? Please let me know. I always love reading your comments, so please leave one in the box below.
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What a great post Liz! I think it’s so important that you balanced out the A – Z list by adding a positive spin to the many realities of living with chronic pain. If we only look at the negative things we experience (and yes, realistically, with chronic pain they’re many) it’s easy to forget that there are also so many positive things still going on in our lives. It’s important to seek out those positives to avoid becoming “victims” of our illnesses, and you’ve given us a great start with your A-Z list!
Thank you, Terri. Yes, we really need to seek out positives. They don’t always come looking for us, so we need to go looking for them.
Thank you so much! I rarely see anyone even acknowledge that back pain doesn’t always have a “quick fix” – the worst offenders being pharmacists who see no need to refill meds that say clearly on the box that it’s incredibly dangerous to stop taking them without doctor’s help w/ weaning. It’s nice to be reminded that others are out there with similar issues that are also trying to make the best of their situation.
I’m currently in grad school (via the internet) for cybersecurity – a longtime dream of mine. Just about to finish my 1st semester. I am determined to make my dreams happen one way or the other, but I do get frustrated because obviously no one would understand if I tried to explain the CP issue. I even got into a ridiculous argument with a classmate recently who didnt understand why I had to bail from a video conference that had already exceeded 4 hours! That was the 1st time I even mentioned to any of them that I have chronic back pain. I knew it would be pointless, and it was. But I will still make it through the program, come hell or high water.
Thanks again for the boost. I will read this again and again, every time I start to get overwhelmed. ?
Michele, well done on grad school. It must be so hard, but you sound determined. You’re right, there’s no quick fix. The number of times people have said to me, have you tried massage/physio/chropractor etc etc
Back pain is so demanding. I hope your classmates will start to understand.
Wow, you have done an incredible job with this! “What is normal anyway? We are all unique and that is normal. We are normal” – I really like that one. You’ve covered so much in this post so concisely, you’ve done excellently! xx
Caz, thank you. I think the ‘Normal?’ is one of my favourites. I spent too many years hating the shape of my back (scoliosis) and wishing I was normal. I realise now that I am as normal as anyone else.
I loved this post so much. I loved all the thoughts and the way you related each situation and the way to tackle it through the help of alphabets.
I really enjoy reading all of your posts. I love the A-Z lists. 🙂 Keep up the great work.
Thank you for telling me that. 🙂
Great post! Love the easy to follow list of A-Z!
I appreciate that you put a positive twist on this A-Z list. I cannot comprehend how living with chronic pain feels but your focus on the positive is uplifting and a reminder to all to live for each moment.
Thanks Jennifer, We need positivity, don’t we.
What a list! You have captured both sides spot on! I’ve shared your post with a friend who is also a survivor with an invisible illness. I know that she can relate to all your negatives and pray that this helps her and others to try to focus on the positives as often as possible. Thank you for your efforts and the time you took to put this all down.
Thank you, Star. I appreciate you commenting and sharing.
Love this post. Great idea balancing the negatives (reality!) with the positives. This post covers so much of what it’s like living with a chronic illness.
This is such a creative way to illustrate life with chronic pain. I really like that you balanced between negative and positive because this could have turned into a negative article quickly! Instead it was informative and balanced!
I love this idea for an A-Z post. Your description for each letter is so enlightening to show what people with chronic pain go through on a daily basis. I really loved how you put the positive in each point too.
This was an informative but also very heartfelt post, I really enjoyed reading it!
Sometimes negative thoughts creep in whether we want them to or not – combining those realities with all the positive thoughts like you have is a potent reminder to seek for the positive things too. Informative and helpful post – thank you.
Chronic pain is horror. I was there and I am so happy my new doctor helped to forget about it 3 years ago, I am still grateful and happy every single day
Hmm… I can only say that I do not like sharing my deepest pains it is like it pulls me more towards it then. So I tend to ignore them. 🙂
The A to Z of chronic pain. Well written. Detailed. To the point. You have explained it so well. As someone who struggles with pain from time to time, you have nailed it perfectly. Thanks
great post on a-z of life have learnt a lot on what is life like with chronic pain
This is well thought and insightful. Thank you for sharing
Another good post. Thank you
I loved this post so much. I loved all the thoughts and the way you related each situation and the way to tackle it through the help of alphabets.
I love this A-Z list format for chronic pain. I remember reading a couple articles on Fibromyalgia and chronic pain that describe these words to a T. Thanks for opening up about chronic pain
I really appreciate the juxtaposition of negative words with the positive, and I love what you had to say about dreams. Dreams may have to be changed or adapted, but you should never lose sight of them.
This post makes a lot of sense to me, especially ‘anti-social’ ‘expensive’ ‘gratitude’ ‘guilt’ ‘okay’ ‘positivity’ and ‘tears’ – a very good mix of the ups and downs of life with chronic pain. And a very good listing for Z 😀 x
I love this list! Especially because you added both the positive and negative for a perfect balance. It is so easy at times to get sucked in by the negatives and forget the positives, especially when battling something like chronic pain. I’m forwarding this to a friend with fibromyalgia because she has been struggling lately. I think it would benefit her to read!
Chronic pain is my life, but I don’t let it be my identity. It’s amazing how well I’ve learned how to manage it and how to enjoy my life. The key is forcing yourself to be active and eating to feed your body, not just satisfy hunger. It’s a process and a conscious effort every day. Most of our pain is from what we put into our bodies that triggers autoimmune responses and inflammation…such a vicious cycle.