Wednesday 10 December 2014

Neuropathy is a large pile of suckage.

(A fakir performs the bed of nails trick, circa 1955. Peter Purdy / BIPs / Getty Images source)

Morning are the worst. I'm unsteady, nauseous, my blood pressure non existent, and life just seems to suck more. Not that I have ever been a morning person. Way back in the dim distant past that was my pre-sick life, I was a night owl who greeted mornings with dread and expletives. Now I have the added pressure of a body that dehydrates overnight until I feel I must look like a dried up prune (mirrors are avoided at this hour for fear I'll be turned to stone should I glance at one. So the prune thing is supposition. I may be more sultana than prune, who knows). I also have body that hates to be upright at the best of times and is very reluctant to move from a night spent horizontal when Freyja starts whining at the door desparate for her morning pee.

This morning as I stumbled into the bathroom I hit my knuckles on the door frame. Hard. So hard it made Freyja jump. I let out an instinctive yelp. And then realised it didn't hurt. Not a bit. I looked down at my red and swollen knuckles. I'd heard the noise. I could see the result. But nothing. No pain. Even in my muddled morning state I had a hmmm...? moment.

I flopped down onto the tiles and looked at my hand which is apparently so inept that it can't even register pain. Sure, I pushed on it and I could feel that. But still no pain. Another defective part of my body to add to the list.

Neuropathy for the win!

It's a weird beast. How can I be in so much pain in some parts and so little in others? Yesterday, I lay on my bed trying not to cry as the pain shooting through the toes of my left foot was so intense. Today, I whack my hand and nothing.

It's not the first time.

I cut my leg whilst shaving and left a blood trail round the bathroom. If I hadn't noticed the blood I would never have known I cut myself.

I've pulled rose thorns from my skin, only noticed because something was tugging on my clothing.

I burn myself on the stove on a regular basis. And the oven. I have been burnt by steam and by splattering oil.

Even when I sliced my thumb the other day the pain was not what it should have been given I had a 1cm cut deep through my nail and top of my thumb.

When I had my last Evoked Potentials test done, the tech kept asking me if I was okay as he kept turning up the device while I sat there unmoved.

Temperature sensation is long gone in my legs and halfway up my arms. I have a spot on my back that is still able to register temperature but no where else. If not for the raging red colour on my skin I wouldn't know the shower was too hot. And I've had burns from heat packs I didn't know had been overheated.

And yet, as I sit here typing I can feel my feet burning, only somewhat dulled by the Lyrica. I can feel the tasaring in my left foot. And the small spot on my lower back that feels like you are rubbing salt and ground glass into an open wound from just the pressure of the air in the room.

And the pain on the right side of my stomach that my gastro decided was neuropathic. It varies from knives, to Knives, to KNIVEESSSSSS!!!!!!!

One part the fiery pits of hell and tear inducing pain, another nothing but void.

I can't even be broken in a consistent manner.

Maybe that's why my doctors keep telling me I'm "special."

Neuropathy is a large pile of suckage.

Michelle :)


  1. THIS I understand... but the Lyrica made me retain fluid and made the neuropathy in my feet worse. Topiramate seems to be my drug of choice now but unfortunately it stops you from sweating (I don't do that anyway so meh) and can make you overheat can can be a problem but OMG THE BEST THING EVER Aldi has an awesome airconditioner on sale this week that you can pop the exhaust thingy out the window so you can wheel it round with you and have your own personal aircon with you where ever you go HUZZAH! As I find my pain is worse when I am hot and when I have walked too much or am stressed or it is a day ending in y.

    As always sending a gentle hug your way.

  2. Cut my leg with a chain saw... Scar no pain....

    The joys of not feeling.

    Great come back though when people think you are faking it. Uhmmmm lets see you go cut your leg with a chain saw....

    Yep... Always fun trying to justify ones dysability

  3. Strong pain in some parts of my body. Total numbness in others. WTH?

  4. Ergh, just ergh. I have nothing else to add but cyber cuddles to non-painful parts.

  5. A large pile of suckage. Just perfect.

    Your posts in my inbox help make my battle with dysautonomia ... easier ... at times. I've missed them. Hope you are as well as can be.


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