Mind Over Matter/Pain – Part 2

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Top ‘Urban Dictionary’ pain definition >What happens when you step on a Lego brick 😆

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 touchy subject.

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 now I’d like to share a story as an example.

Most of us know about MND/ALS and how it ravages the body, but I had hands-on experience back in my carer days with someone who suffered terribly, and beyond comprehension, 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 gut-wrenching.

Now, this lovely lady, who had the kindest of souls, 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.

The night she passed away I’d been in to see her on my midnight rounds, but when I went back in at 2 am, 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 devastated, that she was no longer with us.

Part of me was relieved 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 was also my friend.

In the 22 months, I had cared for her she had indirectly taught me about strength, patience, and perseverance and this is why it’s a great example of what I mean 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 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 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 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 only snap back to reality slap in the face that we all need.

I fully understand that it’s easy to get bogged down with the chronic illness negatives, but what I don’t understand is the mindset that allows it 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 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 when the disease tortured your mind, body, and soul, and even though it hasn’t happened yet – let’s hope that a cure will be discovered soon to end the disease once and for all.

The countless times I sat with you holding your hand while you cried was one of the hardest things I’ve ever had to do, but I’m also thankful that I was able to be there to help comfort you.

Fly and be free lovely lady xoxox

Hugs / Peace Out! Essie ❣