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.
My brain feels like scrambled eggs.
I feel an intense fatigue today, it's almost impossible to type my arms feel heavy and leaden.
My chest feels burned raw on the inside.
I want to go away. This can't be living.
I overexerted again.... meaning I went to the Apple store to try to get a new phone up and running. Amidst "normal" people I felt more alone than ever. I sat there trying to be patient with the akathisia mounting inside of me.
My body broke out in what felt like bee stings all over. I burned. I sighed deeply... can't anyone see this torture?
Finally it was time to leave, mission accomplished but I was uncertain if I could walk across the mall to my car, breathing heavily, a mixture of fatigue, panic, feeling like I was on meth and heroin and LSD at the same time.
I managed to make it to my car.
That was days ago.
It left me depressed and hopeless.
How far I have to go, it doesn't seem possible.
My bladder aches, physical terror comes and goes, the fatigue takes hold and usually I welcome it.
But I have things to do. Life to live.
This might be it. I just don't know.
I must accept this existence. That each moment feels so incredibly uncomfortable.
My brain burns. I mean it. It does.
I have been trying to get immunological testing done now for over 3 weeks. I can't seem to manage it. I had to be at the lab by 10am and it took me a total of 3 weeks to do that.
I'm not a lazy person.
I know it sounds like it for anyone reading this blog. Any outsiders would see me as lazy.
What do you do all day they say.
Don't you get bored they say.
It's all in your head they say.
If you just push yourself the brain will follow they say
You sound so energetic on the phone they say.
You look so normal they say.
When I hang up the phone, I take to my bed. To my bath. To my sanctuary. Away from life, living it on the sidelines for now.
Here I am 61 days off benzos. Two other tapers to go. Every time I get excited, even a little nervous BANG. WHAM. Terror.
I'm feeling it now.
It was from an innocuous email.
Why does everything cause so much fear in my CNS.
I had a rough beginning to the day.
My bladder has hurt SO badly that I was convinced it was a UTI. I mean I was doubled over, crying. But NO. It's my IC flaring BADLY or muscles or nerves misfiring. I have been sitting with a heating pad on my area for DAYS. It's so relentless and boring.
Today I managed to wash my sheets, drive my kid to a play date, buy donuts (NOOO not for me) and do more laundry. I dyed my own hair. I did my own nails. Just because.
Because if I don't do these things, I no longer feel like I even resemble myself. I want to feel that ease in my body. I look at others and envy their ease. Envy that at the end of the night they can kick back with a glass of wine, some good sex and RELAX. Ohhh one can dream.
It was hot today. The beginning of summer and it felt like 90 degrees, dry and delicious.
I dream of summer holidays, of lying around the pool baking in the sun. I can almost convince myself when I am having a window that I will feel that comfort again until BAM...... I get a shock of terror as I have just gotten minutes ago. And my nerves inside feel burned. Burned so badly.
Then I just wonder HOW HOW HOW long will this take. Is it possible to even heal? I'm told it is.
Can I in fact heal on Gabapentin?
That remains yet to be seen. I have no choice though. I can't pace 18 hours a day. I can't, I just cannot. This has been relentless torture for so long, the thought of years ahead well, I just have to stay in the moment don't I.
I haven't seen my kids in over a week. They were sick, and I was petrified to have to take an antibiotic. Petrified if I will ever need any meds again. But I can't live in a bubble. This PTSD is enormous.
I'm getting lots of immunological testing done--mast cell activation and other markers. My immunologist was impressive. He believed my history with parasites. Interstitial cystitis, allergies all have a connection in the IGE portion of the immune system. I don't know what this means, but I hope there are answers to the layers upon layers of healing that needs to be done in order for me to rebuild my life again. I covet HEALTH. I covet a normal person's CNS. I think I have said that before because it is true today and every day from the minute I wake up until the minute I am finally allowed sleep with the jackhammer going off in my brain.
So right now, after a window day I am sitting here with enormous head pressure and terror. My inside feels singed. The funny thing about a wave is that when it occurs, the window feels lost entirely like it never existed. I guess this is what is called the negativity bias.
I want to live again.
Most people are cozy in their bed. Sleeping soundly. Comfortable near a loving partner. Pain free. Terror free.
Most are sleeping peacefully.
Excited for an early morning bike ride or yoga class. Excited for that delicious cup of coffee and croissant.
Most are feeling relief. After all, it's Friday night! Maybe you had a hot date. Maybe you even brought someone home for an exciting romp in bed.
Most are under the covers, dreaming beautiful dreams. Spooning your love or enjoying a comfortable bed
Not most of us benzo or pharma harmed warriors.
As many others, I anticipate the moment of shock and horror being awoken by the morning blast of cortisol or feeling like death each morning. Sick, flu like. Nerve pain and burning. Akathisia AGAIN. This DAMN terror.
I seem to get some reprieve at night. I had a busy day.
I tried SO hard to make it a normal day for my children.
I began looking for anything that could bring me an income from home-even for a couple of hours per day. At each turn, I just ran into the simple fact of how disabled I am.
I cannot stand at a job.
I cannot be anywhere in the early morning.
I cannot handle pressure.
I cannot determine if said day will be a window or a wave.
I cannot predict how I will be in one hour, one month or one year.
Yet I need to survive and am starting to PANIC.
I KNOW I LOOK NORMAL. I even SOUND normal.
But this is an invisible illness.
My physical disability trumps my mental or emotional one.
I don't feel cognitively impaired, sure I'm not as sharp as before but that can be lack of sleep. I feel a deep inability to EXECUTE anything. Something that is utterly foreign to me. I am duct taped together by two other meds. Without them I could not be writing, talking, bathing or smiling.
So what is the point of getting off of these drugs?
I have heard this question a lot. The promise of not being tethered to a harmful chemical. The promise of relief and healing. But, the road there is SO fucking STEEP. It feels endless, and at my age (46) and my circumstances (lost career, income, ability to parent, health and so on) the situation feels quite dire. Dire in a way I have NEVER known.
I am trying to crawl my way out of this.
I'm looking for positive distractions that offer a small income in the interim.
Surrounding myself with others that want to survive this as desperately as I do.
And telling the truth and sharing the stories of those PHARMED like I have been.
PHARMED, GASLIT. DISCARDED.
I know collectively with all of our talents, differences, skills and assets we can all make a difference in small and large ways. It's the only way to press forward I believe.
This terror is killing me.
How can I describe it?
How do I "sound so good" with this internal experience.
Maybe I'm a good liar. Maybe I'm a good faker. Maybe I am entirely detached from my mind and body at the moment.
This is pure chemical terror. How do I describe the indescribable?
I feel it in my chest. Like someone has poured acid down my throat and esophagus (no,, it's not GERD). My head hurts with a terrible pressure. My nerves IN MY BRAIN hurt. While my neurologist assured me that "the brain can't burn" that is the sensory experience I am having.
I got upset yesterday and didn't sleep all night. I was up until 6am.
It hurts. Being so awake hurt. Being asleep hurts.
I dream I am in withdrawal and it won't end.
My dreams were never about rainbows and butterflies. How will I ever be able to explain this to another?
How will I move on from this suspended state of agony?
I was up all night and my heart was beating out of my chest. It felt like that anyway. I didn't care if my heart gave out, I just didn't care. I want peace, I want peace so badly it doesn't matter how that peace comes, it must come.
We lost another warrior.
My friend John. We actually lost two but I did not know the other poor suffering soul. He had two kids I believe and a doting beautiful wife.
John though was my friend.
I will post his obit here not to trigger, but to acknowledge.
He wanted this to be acknowledged. He wanted to be remembered. He wanted to get to the bottom of this and uncover truths. He was one of the sanest men I have talked to, and so so intelligent and KIND. He was a brilliant soul. He believed he wasn't good enough but he WAS. He had been living with family that didn't believe him, and I don't know the other circumstances. But I remember the first time we talked. We talked for hours. And I enjoyed it so much. He was stimulating, kind, smart as hell, and FUNNY.
He had reached out to me on March 21st which was my child's birthday so I must not have seen it. By the 31st he was gone but I didn't find out for weeks after.
John, you are missed and remembered.
We believe you.
Whoever you touched saw your sweet deep soul. We loved you from afar and wanted you well. We wanted you to be seen, heard and diagnosed correctly.
A doctor I believe cut his benzo supply off, I am not certain. This is a preventable tragedy.
We cannot continue to endure this kind of narcissistic abuse by practitioners. It is just deadly. He loved life. I just want people to know that and to know him. He was not crazy. He was not sick. He was not mentally ill. He was suffering from a brutal benzodiazapine withdrawal with NO support.
That is what killed him.
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.