Well, here we are. Again. Oops. Seems I sent today’s letter yesterday. Thanks, Parky brain 🧠😶‍🌫️ Since I was talking about pain, I will continue on the theme.

As you might have guessed yesterday’s letter was written while I was experiencing Parkinson’s Pain Turbo Mode. I am still burning and achy today but more coherent in my performance ability! (This statement offers no refunds)

The challenge of pain is a tough one. How do we define a thing that is so subjective? My pain could be different to yours. Or at least my experience of it is.

It’s that experience that makes it hard to measure. My perception of how bloody painful something is warps the quantitative reality. We’ve all sat in the doctor’s office trying to scale pain from 1 to 10.

I spend time trying to analyse my relationship with pain. With varying degrees of success. Generally, it goes like this:

Ow. Ow. Oh, buggering OW!

Oh, get over it, Emma. It’s just a bit of cramping/stabbing/burning/stiffness/twisting/biting/nipping.

-b-r-e-a-t-h-e-

Ok. It will pass. It always does.

Owwwwwww.

Oh boy. It’s nowhere near as bad as when you gave birth/broke arm/migraines/dysentery/tequila hangover.

-b-r-e-a-t-h-e-

Need to be strong for the kids/Ross/work/readers/dog/postman/friends/mother.

-b-r-e-a-t-h-e-

Ow… -b-r-e-a-t-h-e-

-b-r-e-a-t-h-e-

OH. Fuck. This.

Wine.

Then there is the part where I was brought up to be stoic - in our house, you didn’t give in to pain.

Findings suggest that patients’ pain responses may be perceived differently based on gender. A recent study shows that women are frequently perceived to be in less pain. Women consistently report higher levels of pain than men and are more expressive of pain than men. Interestingly women were perceived to be more willing to endure pain than their male counterparts.

There’s a lot to unpack but it comes down to women being less likely to be acknowledged or believed about their pain. (OK, I know that is reductionism in the extreme but it’s damn close)

I don’t think the medical profession is entirely to blame. Society has A LOT to consider. An uncompassionate and intolerant society has no time for pain. Just as it has no time for illness, disability or anything that is considered a deviation from the norm. But you, my faithful readers, know all this.

I wonder if pain in Parkinson’s isn’t always acknowledged because another branch that gets overlooked is the elderly. Many older people won’t talk about pain, never mind not being listened to if they do bring it up.

When I talk about my Parkinson’s to a health professional I have such a short window to explain ALL the experiences, pain gets sidelined. I end up talking about the symptoms I think they can help. Yet, pain is a daily issue. Perhaps it’s the conditioning or that fact I doubt they can help or that I am a woman and I expect I won’t be listened to.

So if we are struggling to articulate and gain recognition for physical pain what about mental and emotional pain?

Parky steals our motivation. We can suffer depression, anxiety and apathy. For me, the crippling apathy mixed with palpitations is a cocktail I would happily do without.

And what about the galloping anxiety? I don’t even know what I’m anxious about anymore. I’m going for a blanket Every-Bloody-Thing. See that pen on the edge of the table - anxious. That war in ____ (fill in blank) - anxious. That coffee with friends - anxious. That shower - anxious. That thing that hasn’t happened yet, the bins need emptying, that holiday I need, that jumper I have to put on, the kids, the dog, the car. the pandemic, the earth, the universe and everything in it.

But I’m too fucking apathetic to do anything about it.

For a person who was the epitome of motivation and drive the collapse into an apathetic blob had been hard. Doing anything is a monumental effort. Digging into my brain and scraping off the last remaining slivers of dopamine to get me to achieve is exhausting. Oh did I mention fatigue?

The mental health of the world has been dented over the last few years and we are going to need to address it somehow. This could be good news with the potential for more understanding and action.

The emotional pain of Parkinson’s and any chronic illness is often loss and guilt. These on top of all the other pain can be the tipping point into depression.

What can we do about all the pain? (other than wine 😉) We can keep talking about it for a start. With health professionals, with each other. The more we share the more we can understand pain. Support can be available if we collectively start demanding it.

Share your pain experiences with our little community 👇🏻

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With Love

Emma xxx

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