Thread by @Nancyjayneem

Medical trauma sucks. You know need medicine, it's logical & it can help. But it doesn't stand aside from the fact that in years gone by you have faced discrimination, gaslighting, & years of experimentally failed treatments based on the latter that has prolonged your hell 1/ 🧵

The lowest places have been places where you have not been listened to, & served more fresh hell, to a metabolism that dances at the fringes or normal, and barely dips a toe in. You are been 'the healthiest, most dysfunctional person you know' you joke... 2/

You minimum does is too much for me, I don't want more - I want right. I know what I can handle, I experience how it feels.
I have lead my care, I have led my needs, I have fought for myself & I have been my own advocate from places I have no idea where I got the energy from...3/

...when I had so little in me left.
Hope I guess. I guess I had that.
I definitely had self.
4/

So now, still, as I lead my care I don't fit the norm. I don't follow the plug & play, drag & drop, peg in hole system.
I am the small star that fell through the large square hole.
I won't be dropped into that one again.
5/

So, it comes back.
My 38 years of medical trauma, screaming into the void for help, being gaslit and send packing, waiting and paying thousands for help that fell on deaf ears as....well....they couldn't see the little star hole that I fitted into. 6/

It hasn't been a plateau, I must say.
It was more of a crescendo.
Then a decrescendo of chaos....& then fighting, then isolation & then rage - then self researched, guided success.
Im still isolated. Becasue I lead my own way, but when I can't, It hits me like a wave. 7/

So today, a simple GP appointment. A needed script refill for a measly 1 tablet that I have self healed myself down to that I actually only need to have 2/3rd of. Telehealth. As I sat with my feet in buckets of water cooling myself down from a 'keep busy' morning in the sun... 8/

I felt that drowning come. The tightness. The spinning. Will I be able to speak for myself, do I have that script of what I am there for, ready to recite, can I advocate for my, WHY do I have to advocate for me...fucking hell why do I have to fight so hard - surely I know me? 9/

I do know me. I wouldn't be alive if I didn't. I wouldn't nearly not need them help if I didn't. I wouldn't be so healed, & the healthiest I have ever been. I need them but I still have to keep appeasing them that I am a 'sane person' in knowing myself, & standing up for me. 10/

So I stand, I speak, I lead. I distrust, I check, and I manage. I now feel ill, nausea, shakey, spinny, tightness. I am a nervous system that has felt threat. But, I have my back, my front & my future. I have my past as well.... 11/

I am a face of PMDD, Type 2 Immune disfunction, long term undiagnosed ME/CFS, mast cell activation, incorrectly treated brain trauma, undiagnosed Hypo-reactive ADHD that became raging ADHD post TBI... 12/

...I am the face of autonomic dysfunction, Gut dysbiosis through long term digestive irritation from immune hyperactivity, & I am the face of neurotransmitter deficiency, amino acid malabsorption. I am tired, of fighting for me, from me, yet I will, becasue I'm healing. 13/

Tomorrow is another day. I know how to do them fortunately, I have had plenty of experience. I'll keep lifting my voice to be heard, but 1 day, it would be nice to not have to find my own breath for it when it comes to seeking medical help. It is hard to be vulnerable & heard.14/

To those who can, please amplify our voices, don't speak over them. Aim to hear to learn, not label. My 8 yr, 10 yr, 12 yr , 15 yr, 17 yr, 23 yr to 38 yr old self would appreciate it. The world ahead is going to need a lot more listening, & voices that are raised up. #PMDD #MECFS

PS. What triggered this in particular? A suggestion of having some regular blood work done that hasn't been done for a while. Why the terror? Becasue I don't still have the undamaged self that isn't hurting still, to fight further for myself if it needs a new fight.#medicaltrauma