I’ve been thinking a lot about you guys. So here I am after a break.

Firstly, thank you for your understanding and for giving me the space I needed. The part in my brain that managed advocacy just broke. I also felt I didn’t need to do it anymore and that there was enough research out there.

But much of the media relating to chronic pain seems to follow a path that is somewhat like fashion. Much media is sticking to the latest whiff of fear-driven news and sadly everyone’s focus shifts, once again leaving most of us feeling completely misunderstood.

Did the medical profession only just realise that people who needed more and more medication and weren’t getting relief were becoming dependent and dying!?

And has the medical profession now totally become blind to the people that manage meds just fine?

How about the rest of us sitting in-between being told to exercise, meditate and she’ll be right mate?!

I’ve read loads of this crap in the past months.

It’s boring to read the same storylines published in a different way.

Why won’t the real info stick?

Why don’t we learn?

Why can’t we learn?

It’s like we’re all on a ship being steered by a panic-stricken captain who sends us all ‘Starboard’. Only when it’s too late, does the world realise the ship is sinking because we went too far!

Some of us are standing in the middle.

Lots to learn yet

It feels like much of the medical profession will struggle to ever grasp the FACT that we all experience pain differently. This makes me feel like people living with chronic pain will never find the care and treatment they need.

At almost 50yo I’m feeling more changes in my body. There are many that would be a result of not being able to exercise properly over the last 12 years but there are also changes relating to age.

I had a shoulder that caused grief for a whole year – it’s perfectly fine now. And now I have an upper arm that is causing pain – it’ll get better.

The pain relating to my shoulder and arm are nothing like the neuropathic pain I experience. Nerve pain is a different beast.

I don’t care what ANY research says but ongoing, chronic neuropathic pain will NOT go with exercise and/or talking your mind out of it. It’s a different beast that requires a specific balance of pacing – unique to the individual!

It’s an act of forwards and backwards, sideways and a lot of down ways. It’s really hard work.

The way I’m making progress is through my brilliant impactful nerve stims, by adjusting my life and eliminating the things that spark the pain. The less I poke it, the less it yells! The less it yells, the better I feel and only then can I do more and pace up.

The more I poke it, the worse it gets. The worse it gets, the deeper into the hole I go and further away from coming back out! I don’t just pay with pain, I pay with time – lifetime!

Exercise is brilliant for overall relief and relates to general health and maintenance – it’s no fix. My experience with neuropathic pain doesn’t get better when I’m able to manage a long walk and a little yoga (which I can do now… when I don’t have a big event to attend… when I’m sleeping well…. when I’m not travelling… when… when so many factors align!).

One trip in a car and it’s all on again for me. And in fact, I avoid exercising if I know I have a long trip the next day – my body doesn’t manage both activities. It doesn’t manage many group activities. My body manages about 30% of what it could manage if it didn’t have to manage pain.

Think of it as added pressure on the system – that’s how this beast operates!

The backpack of fuel empties differently for each of us. For some, it empties after walking 3km while able to work. For others, it empties walking zero km and being unable to work (and simply managing the day is too hard).

The combinations are endless. Unique to each of us in FACT.

It’s exhausting feeling that people don’t understand this type of pain.

It’s exhausting that many professionals put all types of pain in the; ‘exercise, meditate and you’ll be alright mate’ basket (Australian version!), OR the previously ‘swallow a load of medication, keep doubling your doses and you’ll be ok’ basket.

What a mess!

It’s painful and exhausting, I imagine, to have been managing your medication but to now have it taken away from you. Or that you are now being treated like a child (worse still, an addict!) in order to access it.

My shoulder pain is the; ‘exercise, meditate and you’ll be alright mate’ pain. I push through the pain to exercise the shoulder and my body part screams and then thanks me.

Neuropathic pain is not like that. If I push through, too far, the alarm bells are off!!

What happens after that? I fall asleep… standing up… from fatigue! My ability to string a sentence clearly disappears – the words just stop forming! My thinking goes, my coordination goes, my functions go, my sleep goes, my feet feel blown up and it’s hard to step on them…

For each of us the ‘cost’ of overdoing it is different. For every second we each push through the ‘cost’ will be different.

A one minute push through pain could require a 1-hour recovery for me. In my 3rd year living with pain, it would have been days – yes, days until I was able to reduce the pain levels to manageable! I was a ball of unrelenting fire, spasm and pain at the slightest movement/activity (or noise!).

I paced it back so slowly and with the great intervention of neuromodulation. My stimulation implants have been the chisel in the glacier – I truly believe no other existing treatment at the time could have reduced my levels of pain.

I’ve experienced many various states with this beast of mine. It’s far from simple to work out.

I like the way my pain specialist continuously describes it as ‘complex’.

And does anyone ever state how pain changes? It does… tricky beast!

When are we going to learn?

When are we going to learn to listen?

When are we going to learn to listen to each person’s unique experience?

When are we going to learn to listen to each person’s unique experience and care/treat accordingly?

(She’s back!)