Congenital Vascular Cavernous Malformations

Join the Conversation on
Congenital Vascular Cavernous Malformations
268 people
0 stories
10 posts
About Congenital Vascular Cavernous Malformations
Explore Our Newsletters
What's New in Congenital Vascular Cavernous Malformations

I’m new here!

Hi, my name is MummyTut82. I've been diagnosed with so many illnesses diseases that at age 40 and Mum of 3 darling children, I have lost all quality of life and I'm scared of myself honestly.. For I can't keep just 'existing' like this and I know it is destroying my children's hearts watching me so sick ... it breaks me more every minute coz I honestly believe they shouldn't have to see Mummy this way anymore it isn't fair on them... #icantdothis😮‍💨 #heartbroken💔 #idontwanttoleavemybabies😪 #itisjustfartoomuchtohandle💔

#MightyTogether #PTSD #Fibromyalgia #Anxiety #Depression #ADHD #OCD #Grief #Leukemia #FunctionalMovementDisorder #DiabetesType2 #Cancer #RheumatoidArthritis #OpticNeuritis #NeurocardiogenicSyncope #DemyelinatingNeuropathies #CeliacDisease #InappropriateSinusTachycardia #congenitalheartdefect/Disease #BirthDefect #IronDeficiencyAnemia #Arthritis #ArteriovenousMalformation #SuicidalThoughts #chronicactiveepstein-BarrVirus #ChronicIllness #polycysticovarysyndrome(PCOS) #Hyperparathyroidism #ThyroidCancer #Cardiomyopathy #CardiovascularDisease #CongenitalVascularCavernousMalformations

9 reactions 3 comments
See full photo

Put it into perspective #CongenitalVascularCavernousMalformations

My brain had been broken for a long time. I knew very early on that I was going to be up for a fight. Questioned it after every recovery. I had been struggling for years. I never was my own advocate. Life is hard and for a time, all was crumbling around us. My father in law choosing to end care, my dearest friend fighting leukemia, my dream job lost, all my support cut off from clients, my passion for politics broken, my own family disfunction, my husband bottling anger and my new to be independent grown son pulling away.
The absolute perfect storm.
I had aquired coping skills for every situation through my journey but this time, nothing was sticking. I had a moment of complete fear. A blank. I couldn't remember a name. An extremely significant one. This wasn't menopause or hormones, Im too scatter brained or stressed moment. This was my brain protecting me. I realized in that moment what is happening. I didnt want to forget or try to though.This kept happening more frequently.
Parts of my emotional recall shut off. Almost a robotic state, not feeling or even processing any emotion. I was cold, defiant, accusing and very angry.
Paranoid and aggressive emotions were never feelings I stayed with or let linger. They scared me and I always had a dialog to keep the sabotaging voice away. I dug deep and knew, something is not right. I was always accused of being "too in my head". I felt different, thought different and was stuck circling. I started dreaming vivid extreme dreams, almost premonition like.I started forgetting days and thoughts ran away easy.I couldn't finish a statement without editing it first. I surrendered to the thought of just being tired and was still protecting me after all these years. Fight or flight went into overdrive.. I dug deeper and started asking questions and really looking for answers. I had to thrown everything at it,, from my earliest memories on. The problem was, I couldn't remember. Im not a victim, Im not weak. Im not seeking validation or attention. I knew at my last MRI. I felt what they saw, for years, I was prepared emotionally and physically. I had forty plus years of hallos, flashes, echoes, atrophy, stars, dreams, swooshing, tingles, shocks and blank stares. Im ready to heal and rebuild.