I’m starting to become rather familiar with the wee small hours as I slowly electrocute a section of my body into submission where codeine & even morphine have failed to dull the ache of a subluxed joint that clunks back into place.
My breakthrough pain appears to be nocturnal at the moment as I’m resting quite a bit during the day, but the minute I try sleeping, it kicks my arse. It appears that I’m Batman, just with less crime fighting and more insomnia and husky voices.
We’ve invested in a couple of church candles with LEDs instead of flames to provide me with soft light which is dim enough for Mr Geek to sleep through, but bright enough for me to safely identify night time drugs by. I really appreciate being
able to see rather than scrabbling around in the dark. They’re completely safe so no fire hazards, but still made of real candle wax!
The wires in the photo are my butterfly pads for my tens machine which are currently dealing with my shoulder after it popped out yet again (I leant on my arm – rookie error. Also, surely it’s time for a new joint? I need this shoulder ). Butterfly pads are essentially larger pads that combine 2 tens pads with a non connective strip in the middle. This means that you can place them across your spine without electrical pulses being on your spine, or in my case, place the pads in the optimum space apart to force my shoulder to twitch the joint back into place and sodding well stay there.
I’d been doing so well too! This evening, because the girls had been sent to bed on time due to excessive whiney behaviour (Beanpole doesn’t deal with tired well. Tired + Aspergers = irrational outbursts of claustrophobia. Beauty sleep was required) Mr Geek had tried out the hot stones I got for Christmas, which once we worked out how not to cause 3rd degree burns, were incredible around my SI. He had fun mocking the hippy people on YouTube who used different stones for heat and cold with his Science knowledge of heat transfer (their science behind using hot and cold to heal knots in muscles seems to hold up against his BS filter). We even managed to have an evening nap before we woke up in a panic because I’d forgotten to take my evening meds and the my shoulder went… and cue me still being awake at 1am.
Still, there is a silver lining to all this. If nothing else, I’m getting plenty of quiet time to write and read. An up (and down) side of EDS is that the opiates have barely any impact on me, so where most people would be stoned out of their tree, I’m completely coherent aside from the vocabulary stolen by the Neurotonin. My NHS specialist was skeptical about this being part of EDS and put it down to opiate tolerance from long term usage. This doesn’t explain why my epidural was ineffective, or why the usual local anesthesia does nothing. We’ll agree to disagree here.
During this quiet time, I’ve made contact with a number of local support groups and my quest to find a hydrotherapy pool continues. So far, I’ve found 2 pools but neither have a hoist, 5 canine pools, and 1 equine pool.
My local pool has a ducking stool, but is so cold that the last time we tried, I spent 4 hours shivering under a blanket with skin like ice after. Still, I shall not be defeated….