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.
My last week has been consumed by akathisia and terror.
After two relentless days of terror and acid covering my nerves, running to the bathroom ten times, I am SPENT.
Two days of terror were followed by a day of depression and flu like feelings and nausea.
Isn't it sad when THAT becomes a GOOD day?
I can fight through fatigue but I can't fight through terror.
Today I have a little bit of both, but what I struggle with so intensely is the ability to DO anything.
I can't even get to the bank.
I did go to an appointment today to help clear my cyst ridden skin---another lovely side effect of withdrawal or chronic stress response.
I am really scared.
As much as people report they are healing blah blah I want to know how this level of damage heals. It's painful physically.
So, in my effort to get more support I stupidly went to a local neurologist as one of the specialists here asked me to do.
We sat there in his office going around and around and around.
" If I had a gun to my head, I'd say your problems are psychological"
"Gabapentin is like an aspirin--it's nothing! "
" I have never seen this before"
" I don't believe you"
" Life is not about suffering, I really hope you feel better"
"I'm not closed minded, I'm objective"
"Your problems are psychosomatic"
If only I could transport these doctors inside my body for five minutes.
My head pressure is so bad it feels dangerous.
My insides are sizzling.
But.... it's in my head.
Where do we turn with responses like these?
I am battling so much pain but I smile through it--why? how? I don't know but I try to ACT AS IF.
I feel like giving up right now but I know I have to keep going and get to the other side.
I feel like I'm living in an alternate universe. Maybe some version of hell, though I don't believe in that.
My symptoms go in cycles and today I practically woke up crying. It's the heavy, depression day which I welcome more than the akathisia terror filled day. These symptoms and my physical ones alternate: one day depression, one day terror. On and on with no reprieve YET.
I'm not sure why I feel so doomed, but I do.
I don't feel others are doomed oddly, but I do feel I am.
I feel my insides and I don't know how this is repaired. But I must trust voices like Baylissa's that tell me we do heal. This does come to an end.
I'm about 40 something days off benzos.
I woke up nauseas and crying and a depressed mess.
My kids are going to a party and I didn't even get an invite, my husband did.
I feel shut out, abandoned and in turn I hide away. I know my illness is invisible but I just don't understand how people can forget you, not call or check in or notice that something is wrong. I just would never treat others, especially those that are sick in this way.
He's off with the kids running around like a normal person. Doing banal things I only WISH I had the pleasure of doing: shopping for a birthday gift, running the kids to a haircut, running errands then a party.
I am finding it hard to leave the house.
It fills me with terror.
I don't want to leave, I feel in fact that I CANNOT leave.
I have an appointment to go to in an hour, so I know I must go out today.
But I feel so weepy, terrified. Chemical terror. Just unwell.
Baylissa recently wrote a post that said we are in our child ego state during this process. We are vulnerable, regressed even, to a state of helplessness and fear and dread. Or at least I am. Let me speak for myself.
She was writing brilliantly at the need to be very mindful at what you suggest, what you write or post because people are so very vulnerable in the community. What works for one, may not work for another. For example, I have found doing magnesium chloride soaks (taken from the magnesium advocacy group) very helpful for my myoclonus. Now, I realize that magnesium can be a HUGE trigger for others, and different forms of magnesium are in fact a trigger for me.
I'm sorry if these posts have been off putting or triggering. I am writing for myself however, and I need to tell my truth. I don't feel I can talk to anyone, even my therapist in this stream of consciousness kind of way. I think we all need to tell our truths, we all need to have someone bear witness to it, even if it's out in cyberspace.
I'm not triggered by much these days anymore. I've heard and seen so many horror stories, and uplifting ones too, I just don't know. I know how bad it can be and how draining this process is for caregivers as well as the sufferers.
So, back to how I'm missing my life...
I feel a blackness and a down that I have never felt.
I feel too scared to leave the house, though I must.
I want to see my life back again and it feels so so far away. I can only cling to some reprieve and some positive moments that I encounter along the way.
This is the ultimate experience in being present.
No past, no future. Just right now.
To the outside world it doesn't look like I'm doing much.
But on the inside I can tell you each moment is a fight. I mean a FIGHT.
I feel so helpless to help myself because the last two days I walked for about an hour and felt near seizure at night. Head pressure so so bad, head burning, Please FUCK what the hell is this. My symptoms are pretty terrifying and they don't feel on the normal spectrum of this syndrome.
It's gone on for over a year like this, in this level of intensity and I'm just wondering how much more I can do.
I feel left out of my life, and I am not even able to share with anyone but this page how lonely and disconnected I feel.
I just want it to end, and I want it to end well for all of us.
It's 12:30am and I'm wired but tired as usual. I get my second wind at night- a little reprieve though I really wouldn't even call it that.
I just finished listening to a Podcast called Sincerely X.
It's an anonymous version of a Ted Talk, where people get to share their much needed ideas and stories in a confidential manner.
The one I listened to today was about a Doctor whose clinical burnout likely caused the death of a patient indirectly.
It got me thinking about all the doctors that prescribed this poison and many other poisons so cavalierly. It got me thinking more and more about how many of the doctors treated us after we came back for help. They wanted us to be wrong. They needed us to be the rare patient. They insisted that "they have never seen this before" because it protected them from potentially losing everything, or admitting to themselves and another that they fucked up. They fucked up BAD.
This doctor was brave to speak out about her own clinical burnout and that she stopped seeing patients as humans but rather began to see them as diseases, lab reports and lab values. She stopped caring altogether and that this is when a doctor is the most dangerous-when they stop caring.
She revealed that this is an extremely common problem among not only doctors, but therapists, and all people in the healing arts. No surprise there. I know for myself I was the kind of worker that answered emails late at night, texts weren't off limits, paperwork that needed to be done got done, problems that needed to be solved asap were solved. I worked late nights and after hours even when I had small children. I went back to work after 6 weeks post partum. Believe me, I didn't want to. But I was the one over working and at least from my perspective my husband was under working.
Tonight, I have the case of the shoulda woulda coulda's. Or maybe this is my unlucky fate.
If the doctor who first called in CIPRO over the phone without even examining me had taken the time to not prescribe a black box warning heavy duty antibiotic for a suspected UTI, I would not be here.
If she had taken the time to talk with me, fully comprehend my sensitive history and warn me that you can NEVER in your lifetime take a floraquinalone if you have previously been on a benzo, I would not be here.
If a doctor hadn't decided to give me a steroid shot needlessly after a case of strep, or understood how cipro and a steroid interact in a toxic manner I would not be here.
My life in shambles. My kids without a mother. A needless loss of health and wellness.
I would not be here if an acupuncturist MD I trusted would not have pushed a benzo on me after these other medication injuries.
If he had taken the time to work with me naturally and not insist I needed a pill to sleep, I would not be here.
If I had done more research, which is so like me to do, I would not be here.
If I would have followed my advice to never trust a doctor based on my PTSD experience with a 10 year medical mystery (Interstitial Cystitis) I would not be here.
If I hadn't been lunged at and bitten by a dog while I was pacing in terror and akathisia up and down a mountain and rushed to get a tetanus shot I would not be here.
The assault upon assault of my gaba system scares the fuck out of me.
I have a case of the woulda shoulda coulda's. I want my life and health back.
I want to feel less disabled.
I did one thing today-- I made it to the grocery store and the pharmacy. Because I HAD to.
I listened to a pod cast.
Since when is this a victory?
How will we get more doctors to listen, wake up and start caring again.
No one likes being bashed and I don't blame them. But simply saying, " I'm sorry" or " I don't know what is going on but I'm going to be right here and I'm not going to give up on you" matters. It matters a lot.
I can't believe my life guys. I'm a broken record.
Today my throat feels as if its covered in acid.
My nerves in my chest burn so badly, I actually feel as though I'm being stabbed with large knives. The large knives are being twisted around in circles by some fucking sadist called benzodiazepine withdrawal syndrome.
I nearly jumped out of my chair twice today when the doorbell rang. Just having a guy come and put in a filter in my air purifier felt like a JOB. A JOB?!! Yes. Opening the door and letting someone in felt like a job.
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.