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WR's hopeful farewell


[NY...]

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Trigger warning: My recovery story includes seizures. Please don’t let it scare you. I had them as a child, which makes me susceptible. They are extremely rare for those who taper. And if you’re tapering, or reading this early into your recovery, please know that severely protracted cases are not the norm. I once asked my neurologist, who had been practicing for 30 years, if he had ever encountered a case like mine, and he hadn’t.

 

And on that note…

 

I’m here to let you know getting free of these drugs is possible, even at high doses, after years of use. And for many of us, "withdrawal symptoms" are so unbearable that living with them indefinitely isn’t an option. The people who recover and share their stories of hope, ensuring us that “time will heal”, is what keeps us alive.

 

So here I am, almost six years later, after an excruciating 16-month taper, to reassure you that TIME IS TRULY THE HEALER! I even had multiple seizures during acute waves the first 4.5 years off, and was forced to take seizure meds, and STILL my wonderful brain is able to heal.

 

Like so many of you, I was sick from Klonopin for over a decade before attempting to taper off. When I asked for help, I was just misdiagnosed with various disorders and ailments, and prescribed additional meds (sleeping pills, SSRIs, on and on) to treat symptoms of tolerance withdrawal. All of them only added to my suffering, and were also painful to discontinue, but nothing like the horror of benzo withdrawal/injury. After I took my first 10% cut, even though my world as I knew it fell apart, there was no turning back. I knew the only chance I had at a happy life was getting off these meds, and giving myself time to recover.

 

Of course many people aren’t privileged enough to take a multi-year healing break from their lives, and don’t have family, friends, and doctors to support them in a slow taper and long recovery. I couldn't have managed this if I had children to care for, or was forced to work, or didn't have the support of my husband day after day, rooting me on, making sure I was safe, and had all I needed to cope and recover.

 

I know it’s almost impossible to stay hopeful when you’re being tortured and traumatized by your own nervous system. I understand the daily risk calculations you have to make, deciding if doing Y is worth X days or weeks suffering that may follow. The pain of being blamed for your symptoms, or told that it’s all in your head, or that somehow you’re invested in being ill. The loss of friends, family, career, financial stability, on and on. Our hair falls out, our bodies bloat, our eyes blur, our skin burns, we feel like we drank a gallon of poison, we lose our memory, and are tormented by looping intrusive thoughts, and gnawing feelings of shame, regret, fear, and grief.  We exist in a dissociated trauma state, disconnected from ourselves, and those we love. The symptoms are endless, terrifying, painful, frustrating. I can’t believe some of the things I managed to do while in this state. But we learn to accept, and endure, year after year.

 

And like many of us, I tried everything to help my poor brain heal, no matter how scared or sick or dizzy or sleep deprived or hopeless I was feeling. I did my best to “suffer with dignity and grace”, and do what I could to keep my body healthy, and my life and relationships kinda/sorta intact. I had terrible acute-like waves up until the end, but always emerged from them with a little higher baseline, noticing I was able to do a bit more - sit up at my desk, talk on the phone with a friend with ease, sleep through the night, get groceries on my own, compose an email, remember a recipe, or handle a stressful event without taking a nosedive. 

 

I’m not symptom-free yet, but slowly life has started to fill up with more than surviving and coping. I’m now (finally) ready to return to work, and even joined an Afro-Brazilian drumming group last month. Yes, that’s right - my nervous system can now handle learning a new instrument, memorizing complicated songs, banging away on drums, and dancing for hours! And wow, getting back to work after a 7-year leave is not going to be easy, but I’m just so grateful that I’m finally able to.

 

Please never give up. Keep plugging away day after day, year after year, because eventually the torment will end. And please know what others have said is true - all these years of suffering are not wasted, because you’ll emerge from this a better version of yourself. I learned acceptance, gratitude, and how to be kind to myself. I forgave those who have harmed me in the past, let go of grudges, insecurities and hangups. Gifts continue to be revealed as healing time passes.

 

It’s crazy, but we were given these drugs for anxiety and it took coming off them to actually become fearless. My deep gratitude to everyone on this site who helped me get to the other side.

 

Love and solidarity,

WR

 

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Thank you so much for posting this, WR.  What a lovely message of endurance and hope.  I love that you are drumming now; it's indicative of not only a system that has healed but also a symbol of the vibration of life.  So very powerful.  I pray your remaining symptoms continue to lift until they are no more. 

 

Best wishes,

 

sunshine75

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Thank you for posting this. I really needed to hear it. Congratulations on your healing and I hope it just keeps getting better for you.
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NYC Waverider,

 

What a very honest and helpful story you share! Thank you so much.  I am happy for you that you are so much improved.  I know the things you are saying are true and I'm grateful you took the time to lift us all up. 

 

Enjoy your life! You've so earned it.

 

Helen

 

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can relate  disturbing toughts, feeelings of grief and dread remembering how oneday i felt good waking up without any drug in my system and that went from fine and funcional to severe mental pain ...

 

Q:  do you still deal with Hypersensitivity to other substances?

 

congrats on your efforts, Thanks for sharing

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Please tell me that your waves have stopped hitting..? If not how long does waves last?

You have mentioned you're not yet symptom free, but is it just annoying now or it still torments you?

Are you feeling happy like normally you did pre benzos?

Can you handle stress effectively?

Do you believe you would continue to heal?

And the hardest one - what percentage of healing would you rate yourself?

 

I'm sorry but when I read a suceess story I just want all my doubts get cleared before I celebrate. And especially with you as since I joined BB I have been following your posts as u were the only one who kindled positivity amidst all the hopeless posts.

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I am so fucking happy for you and grateful that you've shared this with us. So much of your story resonates despite my journey being easier. You are so right that going through this forces us to become more resilient and compassionate. I wish you all the happiness and healing.
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Thank you NYC for posting your success story.  It means so much to me and the rest of those still in the trenches.  I’m over 8 months off and it’s still so very very hard.  This was an encouragement today. I wish you the very best in the rest of your life!!! Well done!!!

 

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Wow, thank you for the kind and encouraging messages dear buddies!  I'm so glad my story gives you hope.  IaStoiArto, I love your tagline: "healing hurts (worth it tho)".  I had a similar "symptoms are what healing feels like" mantra, and it was true! 

 

Re: some of your questions...

 

For about a year now, when symptoms flare up, they're at a low enough hum as to not be too disruptive. They just sometimes feel frustrating, b/c I also get windows, where I am symptom-free.  Re: happiness.  Yep, I sure am :angel:.  This experience has forever  changed me (in a good way).  I think this outcome is actually pretty common for people who have survived something traumatic (called "post-traumatic growth").  And  yes, my system can cope with stress quite well now.  This has gotten much better in the last year or so.  Sometimes when I have something really stressful happen, I brace myself for a symptom flare, but it never comes!  It's a great feeling.

 

And yes, I believe 100% that I will continue to heal and believe the same for all of you, including the very protracted folks who have declared themselves forever injured.  I think healing just takes its sweet time for some of us.

 

Hang in there dear buddies.  I'm rooting for all of you  :smitten:.

 

WR

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Congratulations NYC

 

You were the first post on my Success Story way back in November of 2017, I was hoping I could do  the same for you, but missed it by a bunch of posts...LOL!

 

So glad you mostly crossed the finish line, but you WILL continue to heal and improve...over time :thumbsup:

 

 

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Your post came when I was starting to lose hope, it made me happy. But still sad to hear that waves still hit u this far, something so disheartening to hear.

 

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Thank you again buddies for your kind replies. 

 

ThEwAy2 - thank you so much for sticking around to cheer everyone on, providing hope, and perspective.  It's sometimes hard for me to return to BB,  b/c it reminds me of the darker days, but I will try to do as you have, and pay it forward to the buddies still in the trenches.

 

ScaredCat - please don't be spooked by my timeline.  Years-long recoveries are not the norm, and I was on an obscene amount of Klonopin for many years.  Hang in there.  Better days are coming.

 

:smitten:

WR

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W/R,

I don't post much but I remember you from the old 18-30 Months and Upward Thread. Everyone there was always so encouraging to one another. I'm so very happy for you! Well Done!! I've come across many of your posts over the years and they are positive, hopeful and respectful. I've always appreciated that! I was looking for some encouragement and your SS post is certainly that! Like you, I've had a long complicated withdrawal and I'm in a setback, but hoping it won't last much longer. Enjoy everyday!!

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Thank you for giving back by writing your story, its incredible and so are you.  You persevered and made it through this nightmare and I love what you said about this experience making you fearless, I'm going go google what Afro-Brazilian drumming ensembles sound like.  :smitten:
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Thank you Pamster!  The music is called samba reggae, originating from the streets of Brazil, combining Brazilian samba w/Jamaican reggae.  It's fun, and HAPPY music - just what I needed!

 

Dash, thank you for the kind message.  I just read your signature, and I'm so sorry it's been such a long and complicated struggle for you.  Sounds like we had a few things in common, including menopausal fun :crazy:.  I'm hoping your setback (wave?) ends ASAP, and you notice improvements when it does.  Even during my monster waves after seizures, I came out of them noticeably improved.

 

Wishing you all the very best.

 

:smitten:

WR

 

 

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WR how has the perception of your life changed?

Did it bring any spiritual evolution in you?

Anything else in terms of life you believe bwd taught you?

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Dearest NYCWaveRider!  :smitten:

 

Oh, my Friend, how happy I am to find your Success Story finally here on the boards! It's been such a long road for you, from years of tolerance withdrawal to the subsequent years of grueling ups and downs of healing... cruel waves, and perhaps even crueler windows... so now that you can finally put this painful part of your life behind you, and walk with confidence and happiness into a new lease of life dancing, drumming and also back to work... Waw, NYCWaveRider, I am just so, so, so happy for you, my Friend  :smitten:

 

I know you will make the most of this new chapter of your life, I know life is about to become so much richer now for you and that you are going to discover so many wonders of it, and of yourself! How exciting it all is!!

 

Again, huge congratulations for finally reaching that finish line, you've deserved every second of your newfound wellness and happiness. Words elude me, but I am just so happy for you...!

 

Warmest Hugs,

Julz  :smitten:

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Thank you very much for your story! They are so necessary for prolonged people.

I wish you a long life of love and peace😍

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Good morning, dear  buddies!  Thank you again to everyone for the  kind and supportive posts!  Sorry I didn't respond to you again, ScaredCat.  Honestly, the lessons it's taught me feel infinite, but reflection feels a bit too complicated sometimes.  But I'll say it again - the suffering pays off in the end, and I have no idea all of the reasons why.  Maybe it's the "post traumatic growth" phenomena (I just read this article a few days ago which mentioned it again https://www.nytimes.com/2022/04/21/opinion/suffering-trauma-wisdom.html).  Maybe it's those dark painful corners of our subconscious that many of us are  faced to swim around in.  I know facing so many demons paid off for me.  Trauma that plagued me for nearly a lifetime, is no longer causing me pain.  And who knows, maybe our brain over-corrects.  I feel like I have more gaba than ever in my life  :laugh:.  It's probably a combo of many things.  All I know is the loss and pain over the last 7 years has paved the way for me to live a happier life, and others that healed before me have said the same.

 

Julia  :smitten: :smitten:!!  Great to hear from you, but sorry the symptoms are still so painful.  I turned a big corner in my 5th year, so please keep that hope alive, b/c the day will come for you.  I know how hopeless and endless it feels, but we're healing as each day passes, even though the symptoms makes it feel like we're stagnant.  And THANK YOU for all of the love, support, and kindness you gave to me over the years, and so many BBs suffering along with you :angel:.  Please reach out anytime. Biggest hugs to you!   

 

LOVE to all,

WR

 

 

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