The heaviness I feel each morning is profound. I parked my car way up a hill and walked breathless to it. Panting. I used to hike over two hours per day. I was fit. Despite my health issues, I was determined and used to work out up to 4 times weekly. I am a go-getter by nature. Now this is getting me GOOD.
Today walking up that hill left me weak and tired. Is this withdrawal? Chronic fatigue? Both? Gabapentin? What the hell is this? What kind of invasion of the body snatchers am I dealing with?
I made it to a generous man's house who was showing me his True Rife machine used to treat his lyme disease. He has tried anything and everything and it was this that put him "on the doorstep of remission" as he put it. He was lovely.
True Rife is a program that comes with a bizarre contraption and a big wand (he calls it his electric teddy bear because you sleep with it) which matches frequencies to your illnesses and zaps them! Poof. Gone! Bye bye!
He is a super reasonable fellow who fell ill over ten years ago. He tried everything mainstream, alternative, DIY, and then came across this machine and reluctantly purchased it. He kept this purchase hidden from his family as he knew they would think it was ridiculous and guess what?? Now he is 85 percent well!
It took him over 6 years to get the lyme diagnosis (with Igenex)and he gave me hope that one can recover and get well. I wish I didn't have this very serious added layer of benzo withdrawal and this cocktail of toxic medications to whatever else is going on with me immunologically. Yes, I also have a positive igenex dx but... I have to wonder.. maybe most people do? What's the significance of it really, I do not know. I just know I am not right. Something is just not right and it wasn't right even before the benzo. The infrequent benzo use was a tipping point for me and my nervous system. I got injured badly, and fast.
I was reading a book that had this quote in it "A wise man once said, there are two mistakes that one can make on the road to truth: not going all the way, and not starting.
I am feeling that way about just about everything. I have never felt so turned around in circles as I do now. Paralyzed. I am wanting to move forward with so many things: my taper of course, my health issues, my next career move (what career?), my parenting, my life.
I visited another friend today and she said to me "Don't lose your will to live". She is not the first person that has looked me dead in the eye and said those words to me... Don't give up. There is something about this process that is beating me into pure submission in a way I never thought possible. I understand why people in end of life pain want it to be over. Because it's no way to live. Let me make something clear. I have the will to live. I do. I just feel so weakened physically mainly and the thought of enduring endless akathisia and terror and debilitating nerve pain feels...completely impossible honestly. I need some change in my physical health and that will positively affect my mental well being. But I cannot give up. We cannot let this sliver of a pill that changes our very chemistry to win. Hell no.
Don't give up. Let that be my mantra, our mantra. Easy to say now sitting in my chair at 10:50. Harder when the clock becomes 4am and I am writhing in head pain. But the fight has to keep going. It has to. I can only make changes and help others when I am well. I am no good to anyone, including myself in this state.
The layers of medical issues and CNS problems I have feels like too much. It feels overwhelming. I am not optimistic but I need to keep fighting no matter what.
Monica Cassini did it. She did it from her bed and couldn't sit up or lift her head for over two years. She is here to talk about it. I value these stories of hope and wisdom from people that passed through this enormous brain injury. Hope and compassion and curiosity keeps me alive right now.
Post your success stories here!!!
Hard day over here in benzoland.
Felt catatonic and breathless and exhausted all day.
I had tried to cut a bit of the gabapentin the last two days and I think it's a mistake.
My head pressure got so intense I feared it would not stop. I began sweating furiously, getting those smells again and laid down to rest. Rest and Benzo withdrawal aren't words that fit together.
How can one rest with two young boys? With a pile of laundry, a pile of toys, dishes, food, mouths to wipe and feed?? All of those things are joyful and fun when your body and mind is healthy. These are things we do with pleasure. Exhaustion yes, but pleasure under normal circumstances. These times are different.
I laid in bed and did my best to plug my ears.
I am sinking.
I asked my husband if we had enough money for me to go to a functional medicine/naturopath. Where I live this will cost close to 350 dollars a pop.
I thought the answer would be yes, but I got a dose of reality. We aren't cutting it financially and I have only been out of work since November.
How in god's name are we going to continue if we are in the negative each month without my salary? My salary was half if not more of the income that we relied upon. We need the childcare because when my husband is working there is no way I can handle it on my own. The city I live in is very expensive. At this point, I am considering packing it in and selling our house and moving to a small town. I can't imagine it since we are in the local school of our dreams but in times like these we have to make some decisions. We can't live on air and fantasies and I likely will not be able to work for several years.
I encouraged my husband to join taskrabbit. He is highly skilled but is self employed and can go weeks to months with no steady work, because it's the nature of his business. He is highly qualified as an art director and can do pretty much anything on the computer--design, graphics, movies, illustrations, you name it. He can do it. But we have to fill in the holes somewhere. And I am a survivor. We have to do what it takes and yet I can't do much of anything at all but go to the grocery store and maybe pick up one son from school.
I am not well enough to do my job at the moment but apparently I am not sick enough to qualify for disability-a disability that was caused by medical care itself.
If I were a single mother I would have no choice but to reinstate for life. And that would still make me sick. So I am in a conundrum.
And even not being a single mother I am worried I will end up doing the same.
These headaches, this head pressure, this breathlessness, prickling, burning even loaded up and sedated on this garbage, this profound CNS damage is too too much. I would almost prefer god forbid a disease that is recognized, understood, so it could be treated and wham done.
I want my GABA back (don't we all?) Without that, life is all gas, no brakes. It's a life of terror, panic, breathless torture. I hate this. I am having a hard time staying positive when the titanic is sinking and there are people I love aboard the ship. WHY? Because of a doctor's mis-prescribing that's why.
Money doesn't solve problems but it sure helps.
With many other conditions I could do some kind of work. "Stability" in benzo land means you aren't writhing in pain in a fetal position but it sure as heck doesn't mean you are functional. Nope. My friend is in a recliner, another one is a high level professional who cannot work, another is a stoic mother who somehow some way pushes herself to her part time job and her children's sports events, others are literally crawling to the bathroom, or pacing our apartments all day. Are we really the anomaly??
WE ARE ALL SO SICK OF THIS. THIS CANNOT KEEP HAPPENING TO OTHERS.
There is no way I can do anything manual, I am terrible with my hands and at most tasks. I am very good at my job, but that's not the job I can do with a broken body and brain at the moment. THIS IS TEMPORARY. I keep telling myself that but I really am starting to doubt it, starting to doubt if I am one of the unlucky kindled ones that is really broken beyond repair. God, I hope I am wrong or I need to learn to make the transition to wherever life/higher power is calling me to go to in peace.
I need solutions. Fast.
Everyone says go slow on your taper. There is no point. People who go to detox can take 2.5 years at a minimum to be functional again especially if you are one that is 'sensitive' to these medications (which clearly I am..). So if I am going to do this, I have to do it in the next 4-5 months. But we cannot predict our outcome. Some are better in six weeks or six months. Especially those that have not kindled or cold turkeyed and have no underlying health conditions. We really don't know why someone gets well quickly and another does not. I hope the research starts to put together the pieces of this very mysterious and under reviewed issue. Is it genetics? General health? Kindling vs first time users? The state of our gut bacteria? Who knows. Maybe one day someone will care enough to do the research to find out.
Do I turn back around and call it a day? Is this dooable? Live a small life on a poison that I never wanted to be on in the first place? Or endure this path and pray I will become me again.
I don't want to get into regret or remorse. Forward only, not backwards. That's what a wise person said to me. Go forwards to you, not back to who you were. We can never capture who were were and this experience will change us, supposedly for the better (from those that have walked through it, I can't for the life of me see it now).
I look at myself in the mirror now and I don't recognize myself. My skin is spotted, and I am wearing the same pair of yoga pants every day. I am frumpy and out of shape. I don't even care. I managed to go to the grocery store late this evening when everyone was quiet. The fresh air smacked me in the face, the smell of wood burning, dinners being cooked and enjoyed. JOY. PEACE. PLEASURE. SLEEP. Words that every benzo sufferer dreams of.
PAIN FREE. PAIN FREE.
Words that every pain sufferer covets the most.
I am an outsider now.
I don't feel like I am part of life any longer but I am not ready to give up on life unless it gives up on me. I have never felt so close to death in my life. I hope it's my mind and not the reality. But I feel my body and mind are under assault. I saw somewhere online someone described it as being 'mentally raped'. A fellow benzo advocate has been missing these last several days.
I don't know the specifics of his situation as I did not know him, but he seemed like a gem, someone that helped others through this and advocated for others. I am saddened by the continual losses of beautiful people that have been pharma harmed. We have to keep reaching out in our darkest hour and seek medical ( I know this is scary because our situation will not be understood but if you are medically unstable go get it checked out ) or professional help or the help of peers who understand. I am an isolater in this situation, I understand. But we must continue to reach out.
For this reason, I had the idea of starting a help line. When I called a crisis line in the middle of the night some time ago, I ended up in a discussion with the call person who insisted that benzos were treatable in a detox etc etc. She was a snarky bitch. And clueless. It would be helpful to have something similar to what BATAID offers in England. Support and help for family members and those struggling from people that have been through it. People that GET IT. For me, it's the unbearable pain in my body that I cannot bear, For others, it's mental. Everyone has a unique collection of issues but please seek help if you are in a really dark place.
I want to be one of the lucky ones. The ones that glide off and say "oh that wasn't that bad", "yeah I have some looping thoughts but I sleep 6 hours!". I want to be optimistic but October showed me, it was a preview. The veil was lifted and I saw the darkness to come. The terror. It was unbelievable really. It was the most hideously heinous terrifying terror I have ever ever encountered in my lifetime. I don't know if I can live that way for years or even one year. I couldn't do it for one month. I was near death. I need some hope. I am sorry to spread so much cheer! (NOT) but I need to keep this real. This is where I am at tonight folks.
I did a supine meditation through insight timer app
I went to the store
I laughed at a video of my son running - I missed his jog a-thon this morning but caught it on video
I saw a picture of myself from my engagement. I am visualizing myself well again. I want to be that girl again. That woman.
I am going to continue to play LOTTO because sometimes magical thinking can bring....MAGIC.
The smells I am smelling are of INCENSE...that's positive right?
That's all I have to say.
And FUCK the DENIERS that say this isn't REAL.
When I am well.... another idea :)
I have some ideas of doing a photo gallery of people in benzo/pharm drug withdrawal. I don't think any video or photograph could quite capture what is happening INSIDE that is so insane and hard to even put into words. It's also so variable from person to person. But it would be Nan Goldin style photographs of all of us warriors, in bed, hobbling around in our environment, victorious and healed!! Send me your healing or struggling photos!
Some on this journey are struck with only mental symptoms and NO physical. I have to say I envy these folks a bit. Others are primarily hit with physical symptoms: intense pain, tingling, prickling, bee sting feeling, shortness of breath, chest pain, insomnia, seizures, hair loss, tooth pain, jaw tightness, throat closing, throat prickling, diarreah, bladder pain,weight loss, pelvic pain on and on and on.. pacing and inner restlessness of course, head pressure, sinus pressure etc etc. How did I forget? ANXIETY AND TERROR, and the blackest depression one will ever know. Suicidal ideation, paranoid looping thoughts, obsessions, phobias and fears.
Others are hit with BOTH.
Am I lucky or WHAT?
Last night I slept.. A LOT. After not sleeping a wink the night prior( I mean literally no sleep until 10am then maybe I got an hour) today I felt drugged (well, I am...)
I felt my legs were wooden and when I woke I wasn't sure if I could walk. I did manage to get up. I stayed close to home during the day and stuck to my commitment of doing one thing out of the house. Today, that exciting thing was going to the bank. I also got my usual burst of evening energy and colored my own hair again tonight in an effort to save dollars. Now the big question is...how the hell do I wind DOWN?
I talked to two amazing benzo friends, friends that I hope to meet in person one day....
Ohhhhh the suffering is great. It's intense and tragic. Both are in disbelief of what is happening, disbelief at the level of intensity of the suffering and the uncertainty of ever getting relief. Both who have had their lives SHATTERED. Job loss, home bound, health issues, you name it.
This is the new normal
A dysfunctional, lack of functioning kind of normal.
Another benzo friend who I know locally has been on the drug for 25 years. Today he said something to me today that made me think. He said, "maybe do the unselfish thing and stay ON the drug". "Maybe put yourself aside, and stay ON the drug FOR your children. Live a limited life so that they can have a mother for the next 5-10 years".
What if he is right?
Because in this process of trying to get off, they may not have a mother. Many things could happen. I could get sick and stay sick for VERY long. I certainly will not be able to care for them for a long long time and that sad fact kills me.
Geraldine Burns tapered off her drugs and stayed sick for at least two years -but close to five until she felt herself. She also had NO physical symptoms. She had disabling anxiety that kept her home bound however and she was sick to her stomach and thought she was going to die. She missed her entire kids events at school. She couldn't participate in anything and her husband had to leave his job. And this was MANY years ago. How have the prescribing practices not changed since then??? Haven't we learned a thing?? She is healed now. She is a wonderful woman that has been very helpful with her warmth and positivity. But as a mother of young kids, her story, like so many others is frightening.
So I have to ask myself... is what I am doing selfish? The possibility (probability) that I will have to leave my home for an extended period of time. The probability that my kids will feel abandoned by my loss. The possibility that I do not ever fully recover to my pre benzo self. Many possibilities. That the chronic stress response activates latent viruses or bacterias ( I am certain it already has) that it cannot fight in this state with no gaba. That excess glutamate permanently damages my nerves and my brain. These are very very possibly things if you knew what I felt like in cold turkey. It felt like something deeply bad happened. That my system went into a kind of shock, a moment where something just..changes.
All of this uncertainty. Life is uncertain. I know I could get hit by a bus or even better win the lottery tomorrow. But we have to weigh our options. Not everyone can do what Bliss Johns did or Jennifer Leigh did. Everyone has their limits, responsibilities, prior health issues.... We have to weigh the pros and cons. I know I don't feel I can go back on. My body is too badly damaged by the drug and on the drug. What happens when I "jump" after this kindling is anyone's guess.
I have to turn it over to my higher power, and the elusive benzo wise doctor that doesn't exist.
I walk alongside so many others and yet there is no sense in comparing our journeys because each and every person is entirely different. We are all different and yet... we are not unique butterflies. There are others that have crossed this path before us, and are reaching their hands out to help...like Geraldine, Jennifer Leigh, Baylissa....
Sending healing to everyone.
A wonderfully positive blog of healing.
I admire the positivity throughout.
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.