We are not the body.
A good wise friend of mine told me that today.
She suggested that I meditate on the collective, on the idea that we are one and to loosen the hold the body has on me.
As I watched her effortlessly get ready for her day on skype, I was pleased that I didn't have that all too familiar envy. I want to be her. I want to be him. I want to be anyone and everyone but in my own body. Everyone who has been in the throes of med withdrawal has uttered those words, along with " I wish I were me again".
So it was refreshing for me to talk with her today, to get swept up into her adventure and her life with zero focus on my lack. My lack of ability to travel, work, walk freely, exercise, think, love, and so on.
I didn't focus on my LACK today but let myself just be engaged in her story and her experience and let my imagination take me to Florence where she was on a fabulous journey. I didn't get caught up in the future. Will I ever travel again?
Or the past... I remember when I traveled to Italy and was in love.
No, I stayed so present. So present I enjoyed every last drop of our conversation and connection.
No one has a crystal ball. No one can know what the body can and cannot do. Best thing is stay SO present and if you do let your imagination get carried away with you then dream big. I allowed my nervous system to be on a vacation in Italy. I let myself be her and feel her joy and excitement. Though my reality was much different as I gripped my head and squinted my eyes because of the massive head pressure I was having , I chose not to focus on that fact in the moment. I made a choice-- love or fear. And in that moment I chose love.
Anyhow, I know it's easy for "civilians" to give advice. And I know it is frustrating as hell. But here we are. These are the cards I have been dealt and we will see what I make of it or where it takes me.
I saw my psychiatrist the other day after not seeing him for about 8 months.
He had been initially trying to help me get off benzos but when I hit a wall (to put it mildly) he transferred part of my care to another doctor in town that specializes in very complicated low dose benzodiazepine withdrawal. Both are pretty fantastic men. I think that my case actually changed the prescribing practices of my doctor. He's always been a seeker and a thinker. He tested genetics way before it was cool. He discussed gut health and mitochondria before I could even pronounce the word. He is one of the good guys, believe it or not.
When he took me into his office and asked me how I was he began to tell me what a relief it was to see me with my life force back. He told me my spark was back and actually began to cry as he talked to me. I was floored by his empathy. I think it's important not to put everyone into the same category because there are some good guys out there and he sure is one of them. He told me I never had to convince him of my pain, he could see it in my body, in the way I moved, the way I talked and couldn't even finish a sentence in my terrible akathisic state. The truth is I don't feel a whole lot different guys. I am 8 months off this week.
I have completely separated from my body at this point. It's the only thing that allows me to survive the myriad of symptoms that I feel on a daily basis.
I am not med free yet. And while that of course is my goal, I am by no means going to rush the process. I'm protecting my brain and I see NO benefit to rush off drugs and be in a fit of akathisia for the next 2 plus years just to say I'm
'clean" . I hope I'm not one of the ones whose akathisia is permanent but I really truly don't know. And I am beyond terrified at this point to find out.
My children need me.
For them, I need to fake it. I still think they are pissed I no longer live in the home. But on a day like yesterday where I could barely muster the energy to stand up and brush my teeth. I skyped them and said goodnight to them online. And today when I had more power, I sat and read books with them together.
These moments are precious. Every moment we get to do "normal" things is precious. This moment to moment attitude is what is keeping me going at the moment. I'm not being positive, I'm being real. No one in the throes of akathisia can do it gracefully. But we can really savor small minute moments of grace that this process allows us. Moments between people, including our doctors, that remind us we are all in this together and we are all one.
I know there are some in wd that are so tired and bedridden they can barely move an inch or walk to the bathroom.
I haven't felt tired in YEARS. Or rather, let me clarify and say I've been wired but tired for the last several years since I entered pharma hell.
It's 1 am and I am doing some work late tonight. I get afraid to put my head down on my pillow because I start to really feel how brain damaged I am.
My head buzzes and burns and the other night I felt like I had been stung by a swarm of bees. I thought maybe it was something I had eaten, or even worse, I thought akathisia was going to become full blown. Previously, that had been my warning sign--being pin pricked to death by a swarm of bees or tiny little torturous needles from head to toe.
I had taken a magnesium foot bath before bed and I think my entire body reacted. As I tried to fall asleep it is as if a snake entered through the soles of my feet and wriggled up very quickly to the crown of my head. My entire body JERKED.
My torso. My arms. My legs. Flailing.
It left me terrified.
What the fuck have I done? Or rather, what the fuck has been done to me? Is there really no explanation for this? Why have I not been believed? How did I go from fully functional to barely able to leave the house? Why, if the answers are right in front of doctors and health care professionals noses are they not paying attention? How long is it going to take?
I got concerned I am not going to lie. I have been through this long enough that I try my very hardest not to go to the doctor's office and certainly not the ER or urgent care. The only thing I will get there is SICKER.
So, I just try to wait it out. I no longer live with my family so the nights can be especially lonely and difficult. The symptoms are so bizarre, I finally have to say to myself, fuck it. If I die in my sleep, so be it, I guess that is what is meant to be. Now, anyone who has ever known me can tell you I have been afraid of death my whole life. This is the one upside of withdrawal...... I've lost my lifelong fear of death. So there's that.....
I don't have much to report but as the season is changing so is my mood and my optimism. I hate the winter. HATE IT. I mean it's 80 degrees here but still.... it's windy, the nights are cold and I feel it coming....
A couple of things that I might entertain doing in the meantime is buying a light lamp and starting to drink cherry tart juice again at night. The juice used to make me drowsy...yes drug drowsy but still drowsy.
I'm 7.5 months off benzos.
I don't feel accomplished, I don't feel anything except white knuckling it through one more day and grateful AF that my akathisia is muted at the moment because of this toxic soup I'm ingesting every night. I feel horrified at the wreckage this has caused so many.
I have lots of articles to post but my brain can't even remember how to attach documents or save them on here.... so, this online journal will just have to do for now....
Thanks for reading xo
I haven't checked this site in the last month and I just read the comment below. Wow. Thank you for sharing your story. I believe you.
WE BELIEVE YOU.
It's still stuns me that no one believes this.
I don't know why, but it does.
Are there thousands of us online and at home that went from young (ok I'm not so young) and healthy and fit to bedridden writhing in pain?
Do we belong in a psych ward because we have a central nervous system injury?
Would they lock someone up who had MS or Parkison's? Then what the actual fuck is going on.
For those reading that want more support there is a Living with Akathisia fb group and also many benzo groups on fb not to mention benzo buddies. There is also a neurotoxicity group on fb and personally I think I am going through neurotoxicity issues more than wd issues. Yes, my issues stem from the benzo but I think the first injury was the antibiotic and the steroid (and strep throat too ).
There was another suicide in the neurotoxicity community this last week. I didn't know her but she recently posted before and after pics of herself. She was a beautiful young girl in the fitness industry destroyed by and adverse reaction to remeron and then subsequently poly drugged.
I'm having a rough time today.
I have needles and bee stings all over me.
Yesterday I had a hard time getting out of the house because I had such bac stomach issues. I was fatigued and nauseas. Of course. I'm trying to find the culprit.
Is it that winter is approaching? The chicken I ate?
The probiotic? The cranberry supplement? What the fuck is it.
Everything and anything. Literally.
Is it because I pushed beyond my limits last week and tried to "act normal".
Pushing through just doesn't work in this case.
I am doing all I can.
I'm trying to sell things on ebay for distraction and money. I'm working a tiny tiny bit. I'm walking. I'm with my kids. But I am struggling. I am very very ambivalent about coming off these last two meds (gabapentin and remeron) for fear of unleashing a storm so great it can't be tucked back in once unleashed. I'm 7 months off a benzo now and do I feel healing?
I don't know. I just don't know.
I wish I had a crystal ball. I also wish I could turn back time--four years ago I was vacationing in Hawaii and working full time. And with one pill that reality is gone. And the worst really is that no one believes me. Or not many. I heard through a friend that another friend and work colleague doubted my experience. At a certain point, I just don't give a shit.
I know full well what my CNS is doing. I have no real words for what this is but certainly an experience that is painful and real and hidden.
Keep fighting Warriors.
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.
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.