nightterrors

So many new things happening as of late.

Humera helped not a bit. The first month and a half felt great and it reminded me the good of being human. Five months later and my rheumatologist put me on a new medicine called Enbrel(amongst my 55 other meds I take for my many conditions).

I took my first dose on Sunday but I feel as bad as if I wasn't taking any meds whatsoever.

Years ago my EDS meant I had to learn to walk more carefully so I didn't dislocate my joints hundreds of times a day and using my tendons wrong, bruising them left and right. Now I have to relearn and the pain is simply horrific.

And my whole digestive system is a mess of course. Swallowing ten times just to get one bite down really takes any good out of food. Constant nausea and vomiting doesn't improve anything whatsoever.

And a hundred more symptoms of misery makes my huge mountain of existing even heavier.

Yeah I am blessed in many things but health or ease of existing are most definitely not on any of the lists.
Only a very cursed body that does work hard to try to do its best in aiding me, poor thing. Thankful for the small bit of good it tries to do while also wishing I could trade bodies with a healthy person for at least one day.

If only!😕🫤😔

Alas, I wait still for my new meds to start working with fingers crossed and tears streaming down.
Thank heaven that I at least have a few doctors that are trying!
Such a long 29 years of devastating suspense!!!

May the holidays bring the light and hope you deserve this season. And if not, may these Christmas lights on my family's tree lift your soul for even a small bit of time ✨️✨️✨️

#AmplifiedMusculoskeletalPainSyndrome #Arthritis #Asthma #Anxiety #AnkylosingSpondylitis #bedbound #BoneSplints #ChronicFatigueSyndrome #CheckInWithMe #ChronicPain #ChronicIllness #ComplexRegionalPainSyndrome #CheerMeOn #Upallnight #IfYouFeelHopeless #Depression #Disability #DistractMe #EhlersDanlosSyndrome #Endometriosis #Eczema #Fibromyalgia #GastroesophagealRefluxDisease #Grief #gallstones #HypothyroidismUnderactiveThyroidDisease #Hypersomnia #HighBloodPressure #Headache #JuvenileRheumatoidArthritis #Insomnia #Lymphedema #PosturalOrthostaticTachycardiaSyndrome #Psoriasis #PsoriaticArthritis #Psychosis #plantarfasciitis #PanicAttack #PanicAttacks #PTSD #MentalHealth #MightyTogether #MightyPets #Migraine #MemoryLoss #musclespasms #MultipleAutoimmuneSyndrome #RareDisease #RheumatoidArthritis #SuicidalThoughts #Scoliosis #sciatica #ShinSplints #Sleepwalking #MajorDepressiveDisorder #nightterrors

Occasionally still, you come to mind. Mostly in the shallow hours of the night when I wake with a start, body, sheets and pillow heavy with sweat. As I swap out my bedding, climb the 17 steps to the washroom, attempt to shower quietly, read or draw for an hour or so waiting for the cannabis, or the boatman, to drag me down for another - hour? Two? Ever? For the second or third time that night. At midnight. At one. At two. At three. At four. At five when I brew up some coffee and wait for the Sun and my wife to rouse. At 6 when I’m rubbing her feet and I can feel her pulling away to get on with her day and leave me here with you.

My shadow. Nearly 50 years it has taken me to finally see. You are fixed to me. I remember when I was a child how you would loom large in my doorway, in the corner next to the window where a lazy moonlight left you wide berth, at the foot of my bed, stomach growling, or even the few times I felt your lips on mine as you stole a breath or two and how it burned like ice. I didn’t know you then but I saw you every morning in the mirror’s reflection. I felt your gravity in my bones. I felt your chill tongue up and down my spine. I felt your fangs inject your venom in my joints, muscles, skin, mind. I heard your voice, like dry leaves cracking underfoot on a sunless November morning, constantly, day and night, louder than everything and everyone. I was wrong to hope a shadow to be silent.

I hated you. You left your stain on everything. The brighter the day, the bolder and heavier you became. Only on generally dull and gloomy days, where absolutely everyone shared the same dread, did I ever feel you less, if only slightly.

You’ve led me out to some sketchy neighborhoods, at ungodly hours, and left me bleeding behind a dumpster more times than I can count. And yet, I fall for your lies over and over and keep waking up shattered. Hard to see the cracks in the dim shadowlight, but your eyes...damn your eyes! Pinned through the chest, I’m a moth in a display, having once craved light, now drawn to the fold of night.

What an awful, frightful companion you have been. I don’t quite recall the time or circumstance of our first meeting but I suspect it was around the time everyone else left and there was a lot of space to fill. Nature detests a void and so, space must be filled with something. You kept the other wolves at bay. I didn’t realize. I didn’t realize.

My skin bears many marks of my passage here. My body creaks and groans. But you, my friend, pooled on the ground there, you flow from me. You are the blood of the cuts that never healed. You are the soft death of a cry unanswered. I made you and you made me and, while there is light, betrothed are we. Neither of us ever truly free…

from me.