The heaviness I feel each morning is profound. I parked my car way up a hill and walked breathless to it. Panting. I used to hike over two hours per day. I was fit. Despite my health issues, I was determined and used to work out up to 4 times weekly. I am a go-getter by nature. Now this is getting me GOOD.
Today walking up that hill left me weak and tired. Is this withdrawal? Chronic fatigue? Both? Gabapentin? What the hell is this? What kind of invasion of the body snatchers am I dealing with?
I made it to a generous man's house who was showing me his True Rife machine used to treat his lyme disease. He has tried anything and everything and it was this that put him "on the doorstep of remission" as he put it. He was lovely.
True Rife is a program that comes with a bizarre contraption and a big wand (he calls it his electric teddy bear because you sleep with it) which matches frequencies to your illnesses and zaps them! Poof. Gone! Bye bye!
He is a super reasonable fellow who fell ill over ten years ago. He tried everything mainstream, alternative, DIY, and then came across this machine and reluctantly purchased it. He kept this purchase hidden from his family as he knew they would think it was ridiculous and guess what?? Now he is 85 percent well!
It took him over 6 years to get the lyme diagnosis (with Igenex)and he gave me hope that one can recover and get well. I wish I didn't have this very serious added layer of benzo withdrawal and this cocktail of toxic medications to whatever else is going on with me immunologically. Yes, I also have a positive igenex dx but... I have to wonder.. maybe most people do? What's the significance of it really, I do not know. I just know I am not right. Something is just not right and it wasn't right even before the benzo. The infrequent benzo use was a tipping point for me and my nervous system. I got injured badly, and fast.
I was reading a book that had this quote in it "A wise man once said, there are two mistakes that one can make on the road to truth: not going all the way, and not starting.
I am feeling that way about just about everything. I have never felt so turned around in circles as I do now. Paralyzed. I am wanting to move forward with so many things: my taper of course, my health issues, my next career move (what career?), my parenting, my life.
I visited another friend today and she said to me "Don't lose your will to live". She is not the first person that has looked me dead in the eye and said those words to me... Don't give up. There is something about this process that is beating me into pure submission in a way I never thought possible. I understand why people in end of life pain want it to be over. Because it's no way to live. Let me make something clear. I have the will to live. I do. I just feel so weakened physically mainly and the thought of enduring endless akathisia and terror and debilitating nerve pain feels...completely impossible honestly. I need some change in my physical health and that will positively affect my mental well being. But I cannot give up. We cannot let this sliver of a pill that changes our very chemistry to win. Hell no.
Don't give up. Let that be my mantra, our mantra. Easy to say now sitting in my chair at 10:50. Harder when the clock becomes 4am and I am writhing in head pain. But the fight has to keep going. It has to. I can only make changes and help others when I am well. I am no good to anyone, including myself in this state.
The layers of medical issues and CNS problems I have feels like too much. It feels overwhelming. I am not optimistic but I need to keep fighting no matter what.
Monica Cassini did it. She did it from her bed and couldn't sit up or lift her head for over two years. She is here to talk about it. I value these stories of hope and wisdom from people that passed through this enormous brain injury. Hope and compassion and curiosity keeps me alive right now.
Post your success stories here!!!
Someone who found themselves accidentally dependent and suffered an iatrogenic injury from medications that were prescribed. Sharing experience, strength and hope with others. This is written as a person on this winding path and NOT as a professional. Please contact a licensed professional for any medical/psychological care or advice. This is NOT a substitute for medical or psychological care. What is written here reflects my own personal experience ONLY.