Update: I have heard from my neurologist and have had six hours of sleep for two nights in a row

Update.? I have had two nights with six hours of sleep. This is because I have taken an extra 20mg tablet of oxycontin to control the pain during the night.? That’s the reason I could sleep because I had some pain control.?

I can’t remember the last time I had six hours of sleep in a row.? Let alone TWO NIGHTS of six hours of sleep…IN A ROW.

The effects of pain control, and some sleep, cannot be overstated. I am a different person.? I am no longer feeling hopeless and desperate.

It helps that I know my infusion will be a higher dose this week. And that may control my symptoms again.?

If not, it will return to the dose it was before. So the hope is real. Change is coming.

And sleep allows me to be patient.

SO what did I do today?

I walked my dogs!

That’s the first thing I do when I am feeling better – something active, something physical.

I love my dogs. Walking my dogs is my favourite thing. They experience such JOY, just from being outside, even on a lead, exploring the day, the smells, the sights, the sounds…mostly the smells. Their tails are high behind them and they trot ahead in such exuberant delight.?

I love them. Their happiness and joy is contagious.?

It’s the FIRST thing I do when I have pain relief – walk my dogs.

I do something physical, as soon as I have pain relief.

I HATE a sedentary life. I would NEVER choose a life of lying on the couch.

I have exercised all my life.? In the beginning, because I had anorexia nervosa.

Then, I exercised because it combatted depression and kept my mood more positive and even.

Exercise was a release, a relief. I place to put all the bad things.? It was how I relieved stress.

I ran.? I lifted.? I did group exercise. I did karate. I did spin classes.? So many ways to move.

I am never on the couch by choice.

People who love being couch potatoes will never understand.

But people who enjoy exercise, like physiotherapists, need to understand this about me. I don’t need encouragement to exercise, to move. ?I don’t need reassurance.

I exercise by choice. And I exercise immediately that I am ABLE.

The only think stopping me leading the active life I love is PAIN.? Severe pain.? I used to go for 5km runs while in moderate pain.? Arthritis meant I was always in at least moderate pain. ?I still jogged 5km.

CIDP means I am now always in severe pain. I can’t exercise through severe pain. No one can. No one should have to.

Opioids reduce that pain and allow me to function.

If I could have this dose of opioids for the rest of my life (however long that may be) then I would exercise daily.? I would exercise intensely and become fit again.

And I would be able to SLEEP at night again.

Imagine that.

Being able to exercise.

And being able to sleep.

Simple things that the average person takes for granted.

You choose to exercise.? Or you choose NOT to exercise.

You have that choice.

I don’t have that choice.

I am dependent on opioids…without opioids I can’t exercise, I can’t sleep, I can’t function, I can’t work.

?I am dependent…not addicted. ?Huge difference.

But that’s tomorrow’s post.

Do you know what I did next??

I was sore after walking the dogs, so I rested for a hour.

Then I changed my car tyre. It has been flat for six weeks. I have not been able to change it.? But now, today, after sleep and pain relief, I can change the tyre. ?

Those are my son’s legs.? He, at 23, has never changed a tyre.? He wanted to learn. I think its an important life skill and everyone who drives a car should know how to do basic maintenance...including change a tyre.? So he watched, and helped me get the lock nuts undone, and he learned. Now he knows how to change a tyre.

It was very satisfying to finally get this done. It has been bothering me for weeks. The car has been off the road for weeks.? But not because I am lazy or don’t know how to change a tyre!

It’s time for the assumption that people who live with ‘chronic pain’ are highly anxious, depressed, distressed and catastrophisers, to die. ??

That we are lazy, malingering, have a low pain tolerance, are drug seeking cry-babies.?

That we don’t want to learn, that we don’t want to take charge of our pain or do things for ourselves.

That we don’t want to do the work. That we want the easy way out, to just take a pill.

Let me tell you, there is no ‘easy way out’ of constant, severe pain.

These are very harmful assumptions. ?

The facts:

I am disabled by physical/biological/pathological/structural damage and pain, caused by a disease process.

I am very motivated and determined.

I HATE living a sedentary life.? The moment I am able, I am up and doing something physical.

This costs me upright hours.

If I stay lying on the couch, my pain medications last longer.? I have pain relief for longer.? But I hate lying on the couch. ?

If I go walking, or even jogging, or do an exercise class, or vacuum the living room, that will finish me for the day. I will be in severe pain and be forced to lie down for the rest of the day.

But I will have enjoyed DOING something. (Except the vacuuming part).

I still chose to do physical things, because that’s what I enjoy. That’s the life I want. That’s the life that has been taken away from me, but government opioid policy.

If I had more pain medicine, I would have more upright hours. ?I would have more life.

But the government won’t let me have more pain medicine.? Doctors are not allowed to prescribe over 100MME even though it is very clear that I am fitter, healthier and happier on a higher dose (120MME).

Is this fair? No

Is the medicine? No

Is this evidence-based practice? Also no.

Its politics.

But I want you to know WHO I am.? In the hopes that you will realise assumptions that all pain patients love to just lie around all day, and want opioids to get high, are wrong.

It’s not true.

Its incredibly harmful.

And it’s time for these ideas to die.

Find out more about my advocacy work at Pain Patient Advocacy Australia.

learn more about chronic pain, the lived experience, the science and the politics at my Substack. Please consider supporting me for $5 a month. I live well under the poverty line and spend many hours a week doing unpaid advocacy work. This is one way you can support me to continue educating an advocating for proper pain care, especially for people living iwth chronic secondary pain.