Same old same old here.....
The fatigue I have felt the last few days is sprinkled with terror. Wired but tired. And not just tired, this is bone crushing tired. This is I can't move tired and not that good feeling you get after a big workout. This tired extends to motivation too. The tiredness makes it hard to get out of the house. Fuck, this tired makes it hard to get up out of bed.
This tired makes it hard to talk or want to connect with anyone. This tired makes me agitated and angry. Despondent. This tired feels like it will last forever. It feels like my heart and lungs will stop working. It feels like my cells are being strangled and there is just no oxygen in any cell.
I've never felt this in my entire life pre- benzo or neurotoxicity. I have never felt like it's too much of an effort to see my children before this experience. That it feels like too much to make it home in time for their bedtime or make it in time to pick them up from school. That's the kind of tired I am talking about. When my tiredness trumps my ability to love or show up for my children or for anyone else for that matter... that's precisely how tired I feel. Despite this, I push through like a motherfucker and show up anyway. I have no choice.
And yet despite all of this I know it's better than fatigue's evil cousin Akathisia. "Akathisia, also known as the Dance of Death ( one person online just wrote so eloquently about this) is more horrific than words can describe.
And I saw recently a quote on someone's page from the writer David Foster Wallace who said with regards to Akathisia " when the flames get close enough, falling to death becomes the slightly less terrible of two terrors. It's not desiring the fall; its the terror of the flames". That sums it up perfectly.
Anyway, now back to bed. Back to lying on my back while piecing my life together.
I should be asleep right now.
I'm being kept awake by what is a simple little cold in the lives of normies.
A cold is annoying, but you know it will fade away in a matter of days.
My logical mind knows that this is still true.
Yet this chest pain and congestion has brought me down a deep mental rabbit hole.
I can't sleep for one.
And worse, I can't breathe.
The physical air hunger ( I am an asthmatic so this sensation is especially triggering) leads to a mental darkness.
Thoughts that circle around my mind-- I am never going to get better. This is going to last forever. I'm going to have to use an inhaler, and that will lead to acute withdrawal. I don't belong in this world. I have to fake it until I make it and I never will. Never ever ever never ever ever.....
There goes my cyclical doom and gloom brain.
The thing is I think this thinking altogether is a symptom of benzo withdrawal as well as PTSD for anyone that has had a chronic illness as I have had for nearly 30 years.
A friend of mine got frustrated with me tonight because I went into hiding today when I didn't feel well.
Rather than reaching out, rather than telling the truth of my experience, which was a shitty one I retreated. And cleaned.
Everything amps me. I need total calm and I need excitement all at once. I need distraction and I need reality. I need connection and I need isolation.
I am a walking paradox. I'm cycling through so much, so fast it's hard to get my bearings.
And my throat hurts. My chest feels like it's been shot by a hundred arrows.
I know today is just a shitty day that will pass.
I'm so pleased by the comments below from a fellow travelers who is now healed! So amazing to hear these stories and I am so grateful that he'd come on my page to let me know that it does and can get better.
I'm curious if people in your life actually want to really hear what you are thinking and feeling or if they just want you to be well.
I get the sense that people want me to be well, just as much as I want to be well. Even with those closest to me, I try to put on a brave face. I don't think this is a bad defense I just think sometimes you just need someone to see you,and bear witness to what is happening. Sometimes being in reality together is the hardest thing but important.
I'm piecing together a life.
I look like I have one. I mean a normal one. But I don't. Not yet at least.
Today I did a bit of work and mustered up the courage to open some mail.
It's always discouraging to open mail, to confront bills when your finances are so scarce you don't know if you can pay them.
Things like life insurance, health insurance, work fees, taxes ... the boring stuff of life. Things I've never been good at. Now my relationship to these mundane things are exponentially worse.
Lack of sleep takes its toll too.
My sleep schedule is insanely off kilter and part of that is my fault and part of that is the torture this beast brings with it.
At night I begin to feel my best...and when I say "best" it's hardly good. I seem to get wired but tired and take walks late at night to try to help with sleep.
I'm walking through withdrawal but at close to midnight. I look like a crazy person, and by all accounts maybe I am one at this juncture.
I dab my essential oils on my wrists and feet, and dip my feet into a steaming hot pot full of magnesium chloride, I turn on the diffuser, listen to music, try to talk with benzo friends (all of whom have the same fucked schedule that I do) and then put my heavy head on my pillow.
Then I wait.
That's the time of night I think I'm not going to make it. I sort of say some kind of made up prayer and then surrender my will to the universe. So far it's worked.
That's the time of night I feel the burning, my skin prickles like I'm being bitten by a swarm of bugs, my head is making all sorts of mechanical noises some which sound like whistles, others like drilling.
I woke today with terror and an ache in my throat. Yesterday my bladder felt so sore it was hard to walk. My GI is wrecked and that's a constant. This is the only place I recite my symptoms in detail, and I try not to do that at all. But sometimes I just need to say it.
I DON'T FEEL WELL AND I AM SICK OF IT
What does a healthy body feel like?
What is it like to drift off into sleep with a relaxed body and mind. Not a jackhammer drilling through your brain and inhabiting a body that feels more like a forest fire than anything else. What is it like to be believed. To not have to go into hiding because of these symptoms and because most of the world doesn't understand and doesn't care to learn.
What is it like to not have the last thought you have at night be " I don't think I am going to make it?" And even worse, to sometimes feel you don't really want to.
Then there are other days when by sheer will of force, by magic, the stars seem to align and there is a moment and I do mean a MOMENT of calm, peace, contentment and most of all hope.
Those are the moments that keep me going.
And most of all the connection of others--online, in person, on the phone....despite the drama and sometimes intensity that many of us have online it can be a lifeline when no one else in the world gives a damn.
I was recently sifting through the benzo boards and came upon a quote that certainly describes benzo or psych med withdrawal syndrome to those that suffer from it intensely.
You are not drowning.
You are being baptized with knowledge you didn't ask for about an evil so deep it feels as though you'll never breathe again.
But you will.
I was just reading the article about the artist Dave Dave who had been burned by his father and just passed away. This article was so beautiful because although he had a life that had been painful and traumatic he never ceased to be empathetic, peaceful and trusting of others.
I know that this path can make us bitter. Mistrustful. Lonely as hell.
Reading about this boy, now a man, who "had a galaxy of friends" and made everyone feel at ease and at peace tells me there are mystical magical moments that can be extracted from deep suffering.
Look, I'm not for deep suffering but the truth of it is most of us ARE deeply suffering. The ones who are not are usually not on facebook or online sources for comfort. So what can we do with that suffering. How can we make our lives worth living despite this hopefully temporary pain?
How can we make someone else's life more manageable or healthy and happy in the meantime?
When benzo rage, terror, akathisia on and on takes hold it feels as thought we have nothing to give. I know in those moments, I truly have nothing to give. When it recedes there is more room for giving not just receiving.
I'm going to try to post some music, videos and distractions soon..... Tell me how you're spending your days....
I have to write about lives lost. Not to scare anyone. Not to haunt anyone with these stories. Only to tell the truth of the gruesomeness of this suffering. To make it real.
A friend of mine, a writer, has told me it is important for me to write. To write not just for those suffering, after all WE KNOW this is real. WE KNOW this is not imagined. To write for the mother, father, brother, husband, wife, lover, friends and doctors and other medical professionals that do not know, care or believe that this is real. To understand that this is invisible. That we become warriors and survivors that either hide away in our bedrooms or travel the world with a stiff upper lip, swallowing our pain and symptoms.
I'm not just talking about benzodiazepines, although that is largely what I have been writing about. I'm talking about all psychotropics that are prescribed then mismanaged by medical professionals. I'm talking about being gaslit and left for dead.
One woman who died recently and whom I knew personally was a medical professional herself. She was essentially a doctor. She knew medicine. She knew the brain. She felt she was dying, or at the very least I am guessing she knew she did not want to survive this.
One year ago she wrote me and told me her story. Long time lexapro user, taken off in two weeks, then the doctors tried to patch her back up with an assortment of meds, TMS therapy, ECT and more. She landed on a benzo but her entire brain and body had been affected. She often told me she just wanted to be herself again. " I just want to be ME again" she said. We all speak those words, why do we all sound so eerily the same? She had gone to the doctor after a bad breakup and each subsequent doctor's visit landed her in deeper and deeper trouble, jangling her brain and body.
I'm not writing to tell a horror story but to tell a truth. So that her story isn't forgotten. She was not crazy, nor was she suicidal.
She wanted marriage, children, LIFE, work, travel. She wanted what most of us want, and most of us get. I still do believe she could have healed. I believe that we all can. The brain does heal but this injury creates such darkness it is almost impossible to see the light unless someone points it out for us and believes in us, walking and cradling us towards that light.
And it is a long fucking road.
There will be battle wounds but I still believe that recovery is on the other side.
We have to hold onto hope and stories of those recovered. That is why their stories are so powerful and so important. Believe me, when I feel my body and discomfort each day it is hard to hold on to this hope. It is hard to imagine or believe myself so I just have to do my day, each day and squeeze out as much life as I can.
When there are deaths in the community I go dark for several days, even weeks depending on if I knew the person or not. I feel their presence, their essence even if we have never met in person. I hold a thought and prayer for their life and their loss. More than ever, I feel in these moments that we all are one.
Sorry I haven't written for a while. Thanks so much for the comments, I love to hear from everyone ( I just can't figure out how to respond!).
What is new in your world?
Here it's kids, summer, burning... and more burning.
August 3rd is 5 months off benzos.
Some people say at six months or five months that was their worst month. I think that because I have gabapentin on board every day is sort of the same, and the question of whether I am healing or not is up for debate.
My chest burns and it feels like there has been acid poured down my throat.
I am not sleeping much.
I'm up too late online, and I think this amps my system.
These are some things and some habits you should NOT do in benzo withdrawal.
I think I've always had a bit of a hard time with self-care. My old me would think self -care was, well..boring.
When I feel well I want to squeeze in as much normalcy as possible.
I went to the beach yesterday with my children and other couples were there with their kids. These are people I haven't seen in over a year, since I have been in hiding. These were acquaintances, even friends, that were pretty absent during my descent into akathisia and darkness mistaking it for "anxiety" and something I could will myself out of. I felt resentful and initially hesitated even joining them at the beach. But my need to move forward and my need to show my kids normalcy trumped my petty feelings. After all how can someone even fathom the disability that comes with psych withdrawal. I couldn't.
Even at the beach they marveled at how much "better I seemed". Well, partially it was an act. I felt ok minus the daily head pressure and terror,.. I just acted as if. I faked it. I did it for my kids and to try to move forward because I don't know if I'll ever feel safe and comfortable in my body again in the near future. Maybe this is it. I just don't know. This is my life and I have to live it.
I do know that staying indoors and talking about symptoms doesn't help me personally.
It's good to vent and when it gets really bad it's just life or death.. I must have over done things yesterday because the terror, acid chest feeling crept up on me late last night and has been with me all day. It hurts.
The take away is self care.
Getting on a regular schedule is something I aspire to right now.
Keeping things so simple.
That's key for me.
I've been making more attempts at joining life again.
I went to the beach with my kids. That was a first in YEARS.
I'm four months off of the benzo July 3rd.
On my way home, I texted a friend that I was in a far away beach and he just exclaimed, "you're not well, what are you doing to yourself?"
But it was worth it when over dinner my son just mused, " today was a good day".
Until that evening.
I had dropped by a friend's house to watch the Netflix show called Nanette.
Mid way through I started to panic.
Did I take my medication that day?
Was I getting slammed with withdrawal?
Nausea and dizziness crept in and then the head pressure took center stage.
My chest started to get really hot... I can't seem to articulate or describe this symptom even now as I'm feeling it. Maybe my insides are burned. There is a heat and an empty feeling in my chest wall. My lungs start to get tight. Everything feels more wrong than right.
I excused myself and went into the bathroom and decided to take an extra gabapentin because I couldn't remember if I had taken my dose or not and was on the verge of throwing up. I braced myself and my eyes started to become dry like there was sandpaper inside of them.
I talked to a friend and ignored the symptoms. I didn't mention them once. Not once. I mean what's the point anyway.
Act as if I told myself, act as if.
I drove home late that night and didn't sleep until late. Too late.
Today has been a hard day but I forced myself to participate in life again.
If only my body would join me in this effort. If only my body would cooperate and not fight me every step of the way.
Sometimes, like now in particular, I think something is very wrong.
I mean I know it is. And yet aside from the online community, there really is nowhere to go with these thoughts, these feelings, and this experience.
I post on facebook and I'm sure my old "friends" and colleagues feel I've lost the plot. Some may relate quietly and secretly or know someone else that might be struggling from an invisible illness, a mysterious plague like I am.
Just writing this seems to help.
I tried to do some work earlier and though it went well the aftermath seems so dramatic.
I sprawled out on my bed face down and stared into space, in silence, just alowing my CNS to calm down. The chorus of zzzzzzzzzzzzzzzzzzzzzz that my brain or ears generate and that I hear as I lie down on the bed would be so strange and out of the ordinary to anyone enduring it for the first time. But it's my companion now, as all these symptoms are. They are just the new normal these days.
Prison life is getting to me.
I mean that seriously. The prison is my mind and body. No one can see it. No one can sense it. But it's a prison, don't be fooled.
Distractions have helped. When I say helped I mean I'm breaking the day into small mundane tasks.
Listen to music for an hour
Take a shower
Clean some more
Stay home.. no go out, no, stay home. Can't I just stay home forever?
I'm bored out of my mind.
I've started watching documentaries on Netflix. Watching stories of horror make me feel less alone. I don't want to see happy people right now. I want to see human suffering, meaning made of these moments of darkness.
I watched a great one called One of Us about Orthodox Jews trying to leave the community. It was about faith, rejection, addiction, love, bravery and extremism.
I watched Wild Wild Country which was equally great.
I had a very vivid dream. I was in my childhood home, my cat was there and there were many people getting ready for school or work. Taking showers, blow drying hair, picking out outfits. I was part of it. Just as everyone was leaving for their day I realized I couldn't leave like everyone else. I was not going to school or work. I wasn't going anywhere. I couldn't go. Everyone left without me and I was left stuck.
Feeling so so stuck.
Stuck in prison life.
I'm trying to make the best of it.
I take my kids for ice cream and take pictures of me smiling.
I took them to the movies yesterday for Father's Day and the agitation mounted so intensely it was discouraging.
I know this is the wrong attitude but it feels almost better NOT to try leaving the house much or doing much so I'm not reminded, like the dream, that I am not going anywhere anytime soon.
90 days FREE of benzodiazepines.
90 days free of that tiny little pill that turned my life upside down.
90 days free from the chemical benzo prison
I take 7 pills per day still.
I'm duct taped together for now. No one sees it, but I feel it each step I take.
7 pills away from total chemical freedom
7 pills away from feeling my feelings again
7 pills away from being able to work
7 pills away from being able to parent again regularly and consistently
7 pills away from hiking up long mountain trails
7 pills away from sweating hard in a yoga class, feeling that relief and surrender in the end
7 pills away from these chemical hijakers
7 pills away from feeling love, joy again
7 pills away from feeling rest
7 pills away from sleeping soundly
7 pills away from relaxing gently
7 pills away from no longer being so impulsive
7 pills away from regaining patience
7 pills away from not acting like a monster sometimes
7 pills away from being responsible and capable again
What will be left is the question.
For now, I am awake at 1 am.
I've felt like I have had the stomach flu all day and the only thing that helps ( and I'm grateful I can do this) is walking alone listening to music.
My energy is so intense I need to keep walking and walking and walking.
I don't want to stop walking because when I do my reality comes crashing into me.
Grateful for my walks.
I'm grateful for new connections and friends
I'm grateful for my children, even if they don't know me the way I want them to.
Yes, this is hell each and every day. But just like if one would get locked up in prison, we must adapt.
Adapt and soldier on.
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.