Top ‘Urban Dictionary’ pain definition >What happens when you step on a Lego brick 😆
So from where I left off the last time I was talking about pain > Mind Over Matter/Pain – Part 1 – I just want to clarify a coupla things before I start talking about this touchy subject again.
I talked about 1) being more grateful for what we have, and 2) how people would line up to swap their medical conditions for ours, AND even though there are plenty of examples I could use such as cancer, MS, parkison’s etc, I’m going to use MND/ALS.
We all know about, or have at least heard about MND/ALS, and how it ravages the body, but I’ve also had hands on experience (back in my carer/AIN days) with someone who suffered terribly – and beyond comprehension – from this horrendous and fkd up condition.
FYI: To have to watch (helplessly) as this cruel asshole of a disease takes over and destroys a person more and more each day is absolutely gut wrenching.
Now this lovely lady who I shall not name, had the kindest of souls and didn’t deserve to suffer in the awful way that she did.
Not only did she live with constant & excruciating 10/10 pain, and constant & severe nausea 24/7, she had also lost the ability to walk, talk, eat & drink without choking, toilet herself, bathe herself, turn over in bed by herself, scratch an itch herself and – well the list just goes on.
On one hand it was an absolute privilege to be her main carer for nearly 2 years, but on the other hand it was just heartbreaking to see what this unrelenting disease was doing to her physically, emotionally and mentally – especially when there was nothing I could do to stop it for her.
The night she passed away I’d been in to see her on my midnight rounds to tweak the placements of her limbs, fingers, head etc to make her more comfortable, but even though she was in fairly good spirits, when I went back at 2am to check on her – she had gone 😢
Now even though I knew her death was inevitable (I’d been preparing myself for it for months) I was still in complete shock and heartbroken that she was no longer with us.
Part of me was relieved for her as she no longer had to suffer the daily hell she fought so hard to try and get through each and every day, but a part of me was also broken inside as she wasn’t just one of my patients – she had also become my friend.
In the nearly 2 years I cared for her she had indirectly taught me about strength, patience and perseverance, and this is why this lovely lady’s story is a great example of what I meant by being grateful for what we do have when living with chronic illness.
Yes we live with many awful symptoms such as chronic pain, fatigue, gastrointestinal issues, joint problems, arthritis, neurological symptoms, and – well the list can go on for days, but in the scheme of things – are they actually that bad in comparison?
For just a few measly minutes, try and put yourselves in the shoes of this lady, or anybody else who’s fighting every single day with MND/ALS, and do a comparison of their disease vs yours … Now ask yourself this >
- Can you still speak to your children, family & friends?
- If so, can they understand what you’re saying?
- Can you still scratch an itch that’s annoying you?
- Can you still spend quality time with your children – even if it’s just watching a movie together on the couch, or reading a bedtime story?
- Can you still hug your children/loved ones even if it’s painful?
- Can you still get up and go and get something when you need it?
- Can you still talk to your loves ones on the phone?
- Can you still eat, drink or take your meds without choking/aspirating?
- Can you still shower, wash yourself, toilet yourself and clean your own teeth?
- Can you still turn over in bed when the pain becomes so unbearable just because you’ve been laying in the same position for too long?
- Can you still blow your own nose?
- Can you still kick a blanket on/off when you get too hot/cold?
- Do you have to rely on someone to do every single thing for you because you’re stuck inside a paralysed, and terribly diseased body?
- Have you lost all of/or the majority of your dignity?
- Do you have to live in constant fear knowing the disease is going to take you at any moment, but it won’t be giving you a heads-up so you can say your final goodbyes?
If the majority of your answers are no ? then maybe it’s time to re-evaluate and look at what you do still have left in your life and focus on the positives instead of the negatives.
When it comes to living with chronic pain and/or chronic illness there has to be an element of mind over matter otherwise you just become a slave to it when you really don’t have to be.
Yes it’s easy to get caught up in the ‘my life is shit’ mindset, but by taking a minute to step into someone else’s shoes is sometimes the ‘snap back to reality’ slap in the face that we need.
I fully understand (100%) that it’s very easy to get bogged down by the negative murkiness that constantly lingers in our minds when living with chronic pain, but what I don’t understand is the mindset that allows it to completely take over.
Yes living with chronic pain is shit, and yes it interferes with many aspects of our lives, but if given a choice of keeping what I already have, or swapping it for something else such as > cancer/MS/MND/ALS/parkison’s/huntington’s/alzheimers/dementia/rheumatoid arthritis/ETC – I’ll stick to what I’ve already got thank you very much!
Does this still make me an arsehole with what I said in Mind Over Matter/Pain – Part 1? To some people – YES! Do I give a rats arse though if their feelings are hurt? Umm NO!
The reason why it’s so easy for me not to give a shit? Because the people that I’ve offended in the past, or may get offended in the future, only got, and will only get, offended because they didn’t, and/or don’t like, hearing the truth!
I still have more to talk about with pain, and using mind over matter, but I’m going to finish this post off for now with a message to the lovely lady C >
Your suffering finally ended that night when you grew your angel wings and flew away, and although we missed you terribly, we knew you were at peace with no more pain or torment.
You didn’t deserve the hell you had to endure whilst the disease tortured your mind, body and soul, and even though it hasn’t happened yet – we hope that a cure will be discovered soon to end the disease once and for all.
The countless times I sat with you and held your hand whilst you cried was one of the hardest things I’ve ever had to do, but was also a privilege that I was able to be there to help comfort you.
Fly and be free lovely lady xoxox
Hugs / Peace Out! Essie ❣