A great article on HSP's.
I was told by a benzo wise psychiatrist that I was an HSP, I was born this way, my nervous system was different and that it was a 'garbage pail' nervous system. He told me that I would not do well on any meds. Too late! That didn't give me hope. He also said that if I had akathisia then I should stay ON a benzo forever. What kind of advice is that?!
I am scared. I hate being a broken record. But today is a little better. I got a facial ( my skin has broken out with horrific cysts and I look like a broken out teenager) and have been walking from room to room at home. I can't accomplish anything. I feel like a looping distracted teenager that can't attend to any real life responsibility.
So that's me today.
What about you?
I was able to calm my nervous system down when I got that facial today. That means I can work hard and CAN relax my body on it's own (well I am on a bunch of crap still but some days I can control it). So my goal this week is get into a meditative state for five minutes per day... NO MATTER WHAT. And turn social media off at night... It's been my friend and companion but I am going to keep working on that. Who knows... it may improve sleep!
When will this end for us? This prison life. This caged existence. This torture in our own bodies. The fallout in our lives. The bad decisions. Impulsivity. Rage. Fear. Feeling like death. Torture. Mourning who we were and who we could be.
Why weren't we warned??
Why are we the unlucky 25-35 percent?
What is the meaning and purpose of this all along, if any?
Do we ever REALLY heal?
Do we ever rebuild our lives to what they were? How can we explain the losses to our children, our friends, other onlookers who just think we should pull ourselves up by our bootstraps and get on with life?
What's a day in this life like?
I woke up today at 6am to benzo terror. You know the kind. Where your entire nervous system is set on fire. Where your heart is pounding 150 beats per minute. The crying. The exhaustion of one more day like this. The feeling that you just can't do another day. You just can't.
Not all days have been like this. This was stirred by emotions. Emotions that would lead anyone to a sleepless night but not the kind I had. I mean, up all night frying and frying and frying. I am so scared of what this is doing to my body and my soul. And primarily what it is doing to my children that I can barely connect to. They see me drifting around the house like a ghost, laying down or distracted. God, make this fucking stop. I fucking hate you benzos and I hate the ignorance around this medication even more. I hate that life keeps going. Keeps passing me by. Spring, summer, leaves falling, winter, then repeat. And still we are stuck in hell one more year...until....
I stupidly have been putting myself in harm's way. I won't get into the details now, but one day I will expose my shame, my erratic decisions that I don't even recognize. I feel like I have been body snatched by some impulsive erratic emotional looping needy mess. And that's being kind to myself....
A benzo friend comforted me today and said " Oh, just do what you need to do to get through the day". This hero walked through years of torture, akathisia, hell on earth.
Recently he had felt cocky enough to try a little drinking here and there and at 4 years out felt immune to the hell that he endured for so long. Then, without warning, BAM. He woke up in benzo withdrawal once again. Can you imagine? After putting in your time? Does god care? Does god really care if we are good people, kind, loving, compassionate, givers...does any of that shit matter? Well, no. Maybe to your inner peace but not to the cards we are dealt.
Sorry for the bitch fest.
I was haunted by the news that the wonderful Jennifer Leigh PsyD. has announced her retirement due to a wave she has endured after 6 years off benzos. Is it the initial shock that her body went through that caused continued problems? Has it triggered something else that is underlying her condition? Maybe something we all share in common to explain why this is so hard for some and so painless for others?
I am praying for her and mourn her loss to the community. I am saddened that her website will be taken down as it has been such a strong source of support and comfort for so many.
I still go back and read her early posts sometimes just to normalize what I am going through.
My daily questions are "Is this normal?" "Will I heal?" "Has anyone felt this before?". Her posts provided a source of real comfort. She was smart and wrote well. She has a good strong heart. She is kind and sharp. I am pissed that benzos have taken so much from her.
I hope she continues to work at her goals with her book and other ways in which she has helped so many. She has been a beacon of light to those still in this dark tunnel.
While I would love to have a voice in the future when I am well, I don't even know if I could muster the word "benzo" again without a PTSD reaction.
In the meantime, I am trying to ignore ALL of my symptoms. Literally keep going no matter what, die on your feet as my wise friend says.... though my chest and body are on fire, I am having olfactory hallucinations, I am verging on terror all day etc.
Ignore! Ignore! Ignore!
I tell my body this all day. I never thought I would be advocating disassociation but that's the only way to make it through. I like to pretend I am an enlightened monk and that nothing can touch me or my brain. Because, hey, I am enlightened!
The Universe has my back
Everything that happens, I can chose to fight it or accept it
Everything that happens is a lesson
Be careful who you trust
Be careful who you let into your life
Stay away from triggers, strong emotions and people that stir that up in you
Love no matter what comes at you because it's the only game in town
I will heal
I will be healthy and free again very soon
I am still holding at .20 V and the gabapentin and remeron. Next week I go down once again .05 and then hold and proceed downward again.... Yes, this shit is sure taking forever. Jesus--a two year taper off of 5mg. God help me. Kindled and screwed. It was all for nothing but here I am... putting one foot in front of the other.
Another summer, the third one feeling benzo sick. I can't believe how long it's been and I hope I don't have to count three more summers until protracted is over.
I am almost done with my taper. I know, I know. I keep saying that. But everything has to come to an end right? I am at .20 of V. I am on 600mg gabapentin and 15mg of remeron.
I am not worried about the remeron. I don't care if my nervous system is working right and I am left on it for another year.
But who am I right now?
I don't feel like me.
I keep saying that to everyone who knows me and sees me. I sit down and after a five minute conversation ask them "Do I seem normal to you?" " Do I seem like me?". Most people surprisingly say YES.
This is the strangest thing. Feeling like you are on the edge of insanity but being able to play it off as if you are sane. Feeling terror. Sickness. Headpressure. Burning. Chest pain. On and on.
My emotions matter. A lot. What I put my attention on matters. A lot.
I know I keep repeating myself.
Where will this end? I don't know. Hopefully the finish line comes soon and fast. Hopefully there is peace. Hopefully akathisia doesn't stay too long, and god forbid forever.
I hope and pray and hope and pray and hope and pray for everyone injured by Big Pharma.
Injured by doctor's ignorance and possibly bad genetics.
Sending healing your way.
I have been throwing grenades into my life.
I want out. Not as in suicide out but just out. Out of responsibility. Out of confinement. Out of everything.
I've been impulsive.
I've been told I am not thinking clearly.
I've been told my brain had a problem before this.
I've been told I will never heal. I've been silenced. I've been dismissed. I've been ignored. I've been gaslit. I've been running to the wrong people for comfort. I've been disappointed. I've been unsafe. I've been in lack of acceptance. I've been bitter. Angry. I've been in terror. Scared. Alone. I've given to others too much. I've received too little then too much or the wrong thing. I've been out of gratitude. I've been in the moment. In the future and the past. I've been devoid of boundaries. I've been bad. I've been human. I've been rageful.
My dear friend laughed at the recent events in my life ( I will spare the details for now) and said, "You've gotten off the path".
I've been supported. I've been listened to. I've been loved. I've been held. I've been fucked with. I've been damaged. I've been triggered. I've been hopeful and hopeless about this grueling endless process.
Today is World Benzo Awareness Day.
On my facebook feed I am reading and watching heart wrenching and heartbreaking videos and posts from people all over the world about their struggle and losses due to benzos. I see before and after pictures. I see Mothers. Fathers. Daughters. We are all alike and yet we all have our own unique story.
I am camera shy and private these days so I have not posted much about myself on my feed or otherwise. It's hard to explain to people that every little thing revvs me up and dysregulates me. It's hard to explain to others that a group of "normal" people that used to be my friends or colleagues or part of my mom's group feel intolerable to be around. And yet part of my self- imposed "rehab" includes one on one time with one person every day. Either they come to me or I go to them. I am a connector by nature and the thought of being alone with my thoughts, purposeless and rudderless fills me with dread.
Yesterday I spent the day with a good friend. She was in need. She is lonely and scared. She was suicidal and depressed. This is not a benzo friend but she is on medication. The doctor on the phone told her that he wanted to avoid the big guns like seroquel and risperadol and instead upped her other medications. I have known this woman for a long time. 9 years ago when we met, she was perky and beautiful. She still is but her light is not shining as bright lately. She has had consecutive losses: her mother, father, brother. She has had two major neck surgeries. A host of pain killing medications and steroids. She has no family. Little money. A good job but her clients are diminishing because she has a hard time holding her sadness in during work. We spent the day together going to Trader Joe's and picking up my son. All day my benzo terror accompanied me. Chest pain, terror, panic, pelvic pain, stomach issues, the works. I have learned to separate myself from my body. I guess some call it disassociation. But what choice do I have? Each day is brutal but I am grateful for small pockets of relief. I just pray things don't get much much worse after I jump off. I am almost down to .25 mg of V and some say just jump but my doctor says keep going....
The point of the story above was to show you how important it is right now to stay connected. Not just online but in person. We need touch. Caring. Eye to eye contact. Always but especially now. She didn't need to up her meds. She needed love and caring. Someone to hold her hand. To be solid. To have a plan. She didn't need the hospital. She didn't need an antipsychotic. She is not in withdrawal and despite how profound her depression is I would trade it over benzo withdrawal any damn day of the week.
Tell someone about Benzo Awareness Day today, Let's start making changes.
The trick in benzo withdrawal is staying calm and neutral at all costs. And yet, how to do this when the body is failing you, when there are bills to pay, kids that need you, demands, suspicions from friends who are in disbelief that this could be THAT bad.
It is that bad. And worse.
I am living in a sublet at the moment but I still come back to my home to see my children.
I want desperately to be away. To wake up to stillness. Quiet. Rest.
But when I close my eyes at night I see my children's little faces. Smiling, Innocent, Needing Mommy so badly.
So I drive back an hour to see them, but the chaos of little boys instantly sends my body into shock.
And even worse, I have to face my failing marriage.
I flew into a rage yesterday over money--or lack of it and a disagreement with my husband.
Normally I can stay calm. Poised. Mature. But some repetitive fights and the mounting financial pressure we are under just got to me.
I told my initial prescriber that he had NO clue what he has done to my family and I meant it.
I have been financially independent for years. An equal breadwinner in the family. We relied on my income for comforts, for living. More so than I thought.
The fact that I was denied for disability just makes me want to sink further into despair. I am stressed. Money is a stressor and I am worried.
I grew up poor and worked my way through college and graduate school. I built a successful business and had finally "made it" until this happened and my health collapsed.
I am so angry. So bitter.
And yet, they say that anger is the poison YOU swallow and expect the other person to die.
It's just not worth it. Especially not now.
Choose your words and your battles wisely now.
We need support, love and kindness. Benzo rage is real and frightening. It feels like a possession.
One day at a time.....
Yesterday was a window.
The previous day was a horror. Benzo rage is much like PMS. The truth is revealed and released but it sure ain't your mature self talking and processing. And the old saying "what goes up must come down" doesn't apply in benzo withdrawal. What goes up just keeps going up up up and you feel the ripple effect of your heated emotions for days even weeks after. At least I do.
My face looks like a broken out teenager.
My belly looks like I am 4 months pregnant.
I am not my "peak self". Nope. Not at all...
Let's talk about the "window" first. It was good. Not "normal" in any way shape or form but "good enough". I felt a little hyped up and high, tackled a walk in the morning, cleaned my house and picked up my son for an early dinner and then browsed some shops in my area. Never for a moment do I forget that I am "different" right now (and praying not always) but there were moments of joy. I looked up at the sky and thought, fuck it, if this is my last day on earth I am going to just fucking enjoy it as much as possible.
Shopping used to be a real pleasurable pastime of mine. Well, to be honest it was more than a pastime... it was an art form! I quickly walked to the stores late last night with a mission of returning my used 6 MAC lipsticks to get my free one in return. I love free shit. It makes me happy, and it did. Simple pleasures.
How are you all doing?
I am faking it quite well.
I pulled myself up by my bootstraps, started to move away from reading scary stories ( I know they are all true, heartbreaking and real... I am one of them) and started walking....slowly.
I will be moving out of my home for 3 months to end my taper in a sublet I have found. I can't afford to do this but I felt I needed quiet, simplicity... I wanted to be by the beach and hopefully well enough to be out of my bed for the next 3 months.
I have been spending time with others, just one on one in conversation, watching comedy, talking about other things besides benzos such as: books, movies, politics, relationships and reflecting on life and how beautiful but unfair it is.
Dave Chappelle's comedy special is very funny.
I need to stay out of my head as much as possible.
Someone once said these words to me " Your mind is like a bad neighborhood, don't go in there alone".
Try not to be alone with yourself and your thoughts. Ask friends to come over. Try to uber to their place if possible. Go on walks if you can. Watch funny television. Write in a journal. Sit in the sun and listen to the birds. This sounds pollyanna. I know. When I hit acute in November, all I could do was writhe in extreme pain and beg for mercy. Right now with the help (and harm) of other medications, I feel like crap but I am not in full blown horror everyday. My thoughts, and what I put my attention on matters. Kindling is real not only in the on/off again of the benzos but also exists when we talk, think, behave sick. Neuroplasticity is real. The dark side of neuroplasticity is pain, anxiety. We don't have much control in benzo withdrawal but we have some. Use the tools as much as you can. Believe you can and will heal.
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.