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Pulmonary embolus

It’s only taken the 14 years but I finally managed to articulate the effect of my neurological pain to my physio, Farshideh, today. It was a real EUREKA! moment for both of us.

For me, neurological pain may vary in intensity or fluctuate but it never goes away. With some lifestyle adjustments and using some psychological distraction techniques, I get by but this living with constant pain thing is an alien concept to most people. Oh, everyone understands pain but in the sense of it having a cause, of finding a reason, of there being a cure and, generally, of the pain ceasing to be. That’s all normal albeit unwelcome. What they don't get is that there is some pain that is not particularly responsive to medication, even assuming you wanted to take daily medication for the rest of your life, which I don't - too many adverse side-effects.

Knowing this, I mostly make no reference to my kind of pain except, sometimes, when it’s so bad that I can’t hide it and people notice. I then have to try and explain it … and I sit there grappling for the words, for some point of reference that is relevant to those who have never experienced pain like this.

Usually, I ramble on about the ever-present electrical shocks coursing through my entire body or feeling like I am on fire inside with boiling water running through my veins or sensations like barbed wire has been tied, very tightly, around my torso or my legs and arms. Pain so intense that it feels like numbness all over. And I watch people’s expressions glaze over …”but where specifically does it hurt and why?”

Then, today: EUREKA! Farshideh was trying to find a reason why it was so bad this week, what had changed, and I was getting more and more irritated:

“It just IS,” I ground out, “it’s neurological, there is no external reason or cause. It’s inside me … all the time. Nothing you do or I do makes it go away.

It feels like all the electrified neurons, sent by my brain, are shuddering to a halt at various points along my faulty neural pathways. Loads of electrical stimuli are frantically flicking about inside me, building up at junction points, none of them achieving completion and all are feeding FAILED - PAIN back to my brain. As my brain is working fine, it sends more electrical impulses, trying to make me work properly. It’s a never-ending loop: I’m probably lit up like an electric light bulb inside. I should be plugged into the National Grid.

The only time I’m OFF is when I sleep and it’s why waking is agony – I’m being rebooted like a broken computer and although the screen, the bit you see, is not working, there’s a hell of a lot going on underneath – most of it agonising!

It’s not about any external factors causing my pain; it’s about my neurological illness causing the pain. Yes, it hurts more when I move but it’s not because moving hurts, it’s because my impaired neurological response to movement causes pain.”

“So, even just sitting reading the paper hurts?”

“Yes, but it’s not the activity of reading the paper that hurts, it’s the internal dysfunction caused by my illness that is hurting me … at lower levels, if my activity is low, but the more I do, the more it hurts because the stimulation has increased and my body responds to that additional stimulus with a higher level of fail/pain loops, not because the activity itself hurts me.”

EUREKA! She got it. Will anyone else?

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My fabulous physio, Farshideh
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