Life with chronic illness is hard.
Living every day in pain and with illnesses/conditions, is a lot to manage.
There is medication (so.many.pills), physical therapy, occupational therapy, doctors, health insurance issues, massage therapy, trigger point injections, muscle Botox, dry needling (#FibromyalgiaDiagnosis ), home exercise programs, “pre-gaming” showers with electrolytes so that I don’t faint from the heat and standing for too long (#LivingWithPOTS ), making sure I get enough sleep, and the acrobatics of just trying to get dressed by myself (#JointHypermobilitySyndrome ) without falling over (#Neuropathy ).
Most clothing hurts my skin (#SmallFiberNeuropathy ). You’ll usually find me in *soft clothes* (pajamas, leggings, no zippers, buttons, or stitching).
The rest of my day usually consists of ice/heating muscle spasms, trying to calm/stop fasciculations (#Nervedamage ), deciding which assistive device to use when going out, and worrying whether or not I’ll be able to sleep at night.
I cannot sleep in a bed, I sleep ON the bed - with a light blanket. Under the weight of the duvet, I’m too weak to turn over and change positions (#muscleweakness from so much muscle wasting).
And all of this is just managing my baseline.
It’s hard, after being in the cycle of being sick for so long, to remember what HUMAN feels like. Or what it’s supposed to…
Should I stay in bed or get up? Will showering help with the muscle pain, but make me faint because of the #POTS ?
Where is today’s pain coming from? Joints (#Osteoarthritis ), Muscles? Nerves? Bones?
I can always play my favorite game - “Heat It Or Ice It??”
I am not part of the opioid crisis in America. I am allergic to every pain medication available by Rx.
In the spring of 2019, I got my #MedicalMarijuana card (against my judgement/will/everything…because, well, #Stigma ).
I did not partake in college (I was actually allergic to the smoke, so when everyone else was getting high, I always had to go wait outside 💨 🤣).
Now I wondered what people would think. I didn’t want my teenagers to have a mother who was a stoner.
I didn’t want my friends to think I was high all of the time.
It didn’t help that my parents passed judgement…..
Then I tried it and decided WTF, because it WORKED!
Holy shit. Like, for reals, my pain was GONE. The nerves, muscles, all of it. And I slept. Like a little baby.
It literally changed and saved my life.
If I’m not sleeping during a flare up , or desperately trying to distract myself with something (anything), I’m stoned.
And probably keeping up with my dog’s instagram page. (Yes, simultaneously).
Any other pain-free stoners out there?
I’d love to hear what works for you.
#Dysautonomia #HypermobileTypeEDS #OccipitalNeuralgia #DegenerativeDiscDisease #Osteoarthritis #AutoimmuneDisease #ChronicPain #InvisibleIllness