From where I left off the last time I spoke about pain > Mind Over Matter/Pain – Part 1 – I just want to clarify a couple of things before I continue on with this somewhat touchy subject.
I talked about ‘maybe’ being more grateful for what we have and how people would line up to swap their medical conditions for ours, and now I’d like to share a quick personal story as an example of what I meant by that.
Most of us know about or have at least heard about MND/ALS, and how it ravages the body, but I’ve had hands-on experience (back in my carer days) with someone who suffered from this horrendous and awful disease.
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 we’ll call Mrs. C, did not deserve to suffer in the way that she did.
Not only did she live with constant & excruciating pain, and constant & severe nausea 24/7, she’d also lost the ability to walk, talk, eat/drink without choking, and – well the list just goes on & on.
On the night she passed away I had been in to see her on my midnight rounds, but when I went back in at 2am to check on her, she had gone 😢
Part of me was so relieved for her as she didn’t have to suffer through the 24/7 hell anymore, but a part of me was broken as she wasn’t just a patient – she had also become my friend.
In the 22 months, I’d cared for her she had (indirectly) taught me about strength, patience, and perseverance, and so her story is a perfect example of what I meant by being grateful for what we do have when living with chronic illness.
Yes, we live with many shitty symptoms such as chronic pain, fatigue, stomach issues, joint problems, arthritis, and – well the list can go on for days, but in the scheme of things – are they really that bad in comparison?
For just a few minutes put yourselves in the shoes of this lady, or someone else who is suffering from 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 yes, 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 eat, drink or take your meds without choking/aspirating?
- Can you still shower, wash, toilet yourself and clean your own teeth?
- Can you still turn over in bed when the pain becomes so unbearable because you’ve been laying in the same position for too long?
- Can you still kick a blanket off when you get too hot?
- Can you still pull a blanket up when you get too 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 focus on the positives instead of the negatives.
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 all need from time-to-time.
I know from living with Ehlers/chronic illness that it’s very easy to get bogged down with all of the negatives, but what I don’t understand is the mindset that allows the chronic illness/chronic pain to take over completely.
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/Parkinson’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!
I’m going to finish this post off now with a message to the lovely lady Mrs. C
Your suffering finally ended when you grew your angel wings and flew away, and although we missed you terribly, you were free of torment and pain.
You didn’t deserve the hell you had to endure while the bastard disease tortured you, and even though the countless times I held your hand while you cried was one of the hardest things I’ve ever had to do, I am thankful that I was able to be there to help comfort you.
Continue to fly and be free lovely lady xoxox
Hugs / Peace Out! Essie ❣