Hope is FREE -I am going to try to ignore my thoughts (like the one that just said "omg I am disabled now")
Things are getting kind of comical here.
Even our dog threw up.
Stomach flu it is.
Staying away as much as I can because I am trying to get STABLE remember?
No such luck.
This is why parenting and withdrawal seems...well, just about impossible.
A friend said to me today "go to detox, you aren't stable because you aren't able to work or parent or leave your house".
Well, my terror has been gone these last two weeks. Oh the relief. That makes me feel suddenly more stable even if I am not FUNCTIONING.
It's the gabapentin. Without it I would be writhing in pain.
It's another problem, I know. A problem I think about every second of every day.
My husband has been wiping my kid's brows, cleaning their poops, cloroxing the house millions of times and our old dog walks up to him, sits down and throws up at his feet.
I think I am next.
The fatigue is pulling me back to bed, the headache, the nightsweats but I will take it.
THIS IS MANAGEABLE.
I don't have terror and akathesia. I am fine with the rest of this as long as that is kept at bay, which I know it won't be for long.
Has anyone tried a light box?
I heard that can be healing as well as a weighted blanket.
I have to get it together to order those things on amazon.
-no terror, I can sit and lay down, thank you god
-my one kid is getting better, the other one is now worse.
The little one knowingly said the the older one "You know when you keep crying it makes it worse. You have to try to calm yourself down"
Yes.....words of wisdom
When it gets bad we have to try to calm ourselves down (which is pretty darn hard in the midst of akathesia--it's next to impossible) and not amp our systems more.
-I feel so tired that I am forced to surrender
-praying a lot to myself, trying to remember THIS IS NOT ME AND THIS WILL PASS ONE BRILLIANT DAY
How many of us are moms and dads out there?
When I read Matt Samet and Baylissa and Jennifer Leigh (her kids were grown at the time of her withdrawal I think?) I wonder HOW DO PEOPLE DO THIS WITH YOUNG CHILDREN?
I read some BAD stories on BB about people 50 mos out, still disabled. I think if I am disabled for 3,4 or 5 more years?
Stay in the now. In the now.
I am powerless over this and YES my life has become unmanageble.
I can't turn back time and be 30 or 35 or 20 going through this.
Today I am finding it very very hard to be positive.
I am sorry.
Am I using my tools? No, not really.
So, up I get, going to wash the negativity off with a shower and plunge myself on a walk.
If you are unwell or reading and writing from a bed, do what you can.
Listen to bineural beats and meditations for calming.
Listen to Bliss John's calming meditations
You can do this
I looked at pictures of my gorgoeus benzo friend who was tough and strong and lifting weights 3 years ago. She looked beautiful with her whole family. She is in a recliner now unable to leave her home. We have to fight this and we cannot let a tiny pill take us down. I texted her this morning and I said, "This isn't us" It isn't. I was doing yoga and hiking daily just two years ago. Despite my health issues I never let it stop me.
When I look at the size of the valium I am taking it is half of a 2mg pill. Miniscule really. I cannot let this take me down. Yes, I took wrong advice and made mistakes last year because I was misonformed. I trusted the wrong doctors and it's the community support and knowledge that has given me the tools to get to where I am today.
Keep going. Keep fighting.
Each day and in every way I am getting better and better. Bliss John's words of wisdom. :)
'I woke up (well did I even sleep? barely) to the screaming and crying and shitting hysteria of my son. Another calming day for my CNS.
Of course when he awoke last night shitting his brains out and got sick one day post flu shot the doctor denied any correlation. She sarcastically said, "the vaccine is a dead virus and it can't spontaneously put itself back together and walk around like a zombie". Does she know I have benzo rage at the moment? Does she realize? Lucky for her I hung up quickly but I wanted to reach into the phone and strangle her. This was after she confidently told me my son must have picked up the Noro virus at the office and we likely would be getting it in 24-48 hours because "It's very very contagious".
This is the same woman who told me my children absolutely did not have strep last year and when I assured her it was..who was right? ME. You say change doctors? I might, but right now I cannot even deal with anything. She takes our insurance and we go to her and her colleague as little as possible.
Doctors are the queens and kings of denial. If they haven't read it in their textbooks, nope, it's psychosomatic. If they haven't seen it in their office before, well, you are just having an allergic reaction.
I read a report on gabapentin on pub med that said they did a "slow one week taper" of gabapentin on an elderly woman and when she went batshit crazy after 5 years being on the drug they were in dismay! It must be the faulty genes of the patient! It must be such an anomaly that they had to write a report about it? I just about spit out the food I was eating when I read that report to laugh. JUST. ABSURD.
A one week breather and trying to regain stability to finish the last leg of my taper.
Is god on my side? Not so sure. Why is the world as I know it collapsing? The world I worked hard for over 16 years to create and build and fight for. Everything. So many in this fight are in similar positions and I am just sick of it. Sick of the denial, the excuses and being marginalized and discarded.
I don't believe a word any doctors say anymore. This isn't a doctor bashing site but I just DO NOT. There are good guys out there for sure. Brilliant minds and healers. I know that. If you know a good guy--a benzo wise good guy post them here!! We need smart, saavy docs that understand this and more. Not arrogant, know it all doctors that deny this and more.
Before you judge me for giving the vaccine to my son (as I know this is a heated topic in itself) the ONLY reason I had everyone in my house vaccinated is because I cannot tolerate anything at the moment and couldn't have my kids bringing home the flu. I have already been through the ringer with my health since August. Climbing out of it. The flu will take me down. Apparently, it still might. Let go, and let god. I have to surrender. All I can do is put one foot in front of the other and make the best decisions I know how to make in the moment. And they clearly aren't always good or wise or thought out.
Ate about 4 cloves of garlic yukky! for viral health. My older one agreed to join me.
comforted my little one. to the best of my ability. Didn't succeed but tried nonetheless.
made my bed
reached out to my neighbor
will be walking and pacing shortly
drank a green juice
made myself breakfast
Wishing everyone happier days ahead. Just have to get throug the winter and back into sunnier days.
The inability to handle ANY stress at all is pretty extreme at the moment. Good or bad stress sets my system off. I need to hibernate mostly.
I love hearing people's comments and experiences. I won't be responding to people's private messages not because I don't care, I DO. I think I just have to limit my computer time at the moment since I am not doing too well. I just want to keep things AS SIMPLE AS POSSIBLE. I need to keep things SO basic. Eat, sleep, spend time with my children. write occasionally and survive. I am a people pleaser at heart-- I want to respond, help, share with others. Right now I have to pull all the energy I have within and just SURVIVE this especially now that I am not doing well on a minute to minute basis. My symptoms change and vary each day every day and even an appointment at a doctor's office can put me in the bathroom for hours.. The stress response is so overactivated at the moment that what I need is fresh air and distraction more than anything.
I went to an appointment and this healer handed me two books. She said " You need to focus and think about something else, here... read this". I agreed. Two books that have nothing to do with this madness! What a relief. If only I could focus and concentrate on anything at all!! It's hard because I can't really read, or focus for long periods of time or do much of anything productive.
If anyone has any good DISTRACTION tools I would love to hear them!
Before I got so sick I tried a painting class which was marvelous. Now, all of my distraction attempts need to take place within the home.
I know we must have kept busy SOMEHOW before computers and phones.
I am tempted to give myself an assignment--no internet and no phone for one week.
I wonder how that will impact my sleep and my neurological health. I think it will improve it vastly.
So if you can, get out there on your walks, keep busy, be with safe, loving people and talk to others, be in fresh air if you can. Savor each moment of respite and relief.
Today is not as easy as yesterday. My sleep was muddled and I woke up to the screams of my little one having pooped everywhere. I want to get up and help and I just cannot. I feel guilt and shame every time I don't show up for their hurts. Thank god my husband has taken over the mornings because my sleep begins at around 3-4am these days. The madness....the terror. the sleeplessness. It will be a distant memory I hope soon.
We all heal. We do. Let that be your mantra! One foot in front of the other......
So I was so over focused on my fears I forgot to write what I was initially SO grateful for today.
I picked my son up from school.
We went on a date for sushi together. We talked. I love being with him, he's just fun and curious and eccentric.
I got him some ice cream
My benzo friend who is struggling texted "You are light years away from me if you can have sushi with your son". But I am still on the drug, she's off. She's struggling. It's goddamn hard and she is amazingly strong. I also told her without the neurontin on board ZERO of this would be happening. I'd be in a hospital bed. For sure bedridden.
So.... I am grateful. I pushed myself to do what I could despite my stuff and I am SO very grateful for the little moments. This is hard. So hard. For those who are caring for someone going through this, this is hard beyond what you can imagine. So please be gentle. Please be kind. I know it's hard on you too. These little things were BIG for me today. I am grateful
The upside of no longer working is that I can sleep until 10 or 11. I am not falling asleep until about 3 or 4am and my devoted husband is getting up with my kids. Again, I realize the terror and sleepless nights are yet to come when I full come off the last 1mg of valium. I restart my taper January 1st because I needed a breather from the terror and pain I felt 6 weeks ago. I got neurontin on board and it's helped me function. Don't judge me. I needed desperately to support my system to get off this final bit and I was in a fetal position in horrific pain. Believe me, I want to be med free more than anyone on this planet earth. But when there is a medical emergency like Akathesia and severe unrelenting pain I felt I had to do something. I didn't think being stoic or following the advice of BB was the way to go. I know what my body and mind can handle and I could not handle that for an extended period of time knowing I still had potentionally 3-6 mos to taper and deal with acute. I know I might have to endure a shit ton of pain in order to break free but my doctor scared me when he said " I don't know if you are going to make it" and that actually staying in pain could cause a larger immune issue like RSD. With that, I was sold me on the neurontin. I fibbed and took 3x less the dose than he wanted me to take. And it worked. I trusted MY NERVOUS system not someone who is randomly telling me a number to take out of a book. No way I could have stayed like that for 4-6 mos and more when I hit acute. I know so many that end up with no physical sx whatsoever. They have looping thoughts etc etc, but they don't hit acute. I think those that have kindled and been on/off and those with sensitive nervous systems may not be so lucky. I don't understand why what is happening is happening to be honest. I keep saying that I wish I could be put to sleep for six month and wake up so that this horror is over. It's not like I am asking the universe for a coma or anything, I hope you get my drift. Just make it end.
Today was a better day. I read pieces of Matt Samet's book Death Grip in the wee hours of the night. I talked to Geraldine Burns last night and what a woman! I love her! She was so warm, so lovely, so reassuring. She assured me that many of the people on her website healed. A french woman named Madelon who ended up in a asylum. Healed. The tragic looking guy Scott on the As Prescribed trailer. Healed. A woman Cindy who had tried multiple times to get off. Healed. A farm woman named Tammy. Healed. Everyone healed. And even if it's not full healing., I will accept some version of healing. What I felt 5-6 weeks ago and what I feel in my CNS on a daily basis--I really wonder. Can this really heal? I feel so damaged. Fragile. Burning. On Fire. Prickling. Beyond sensitive to stress. My guts are a wreck. But they all healed. What's the secret? Time. Everyone says Time. And genes. I say genes. But I have no proof.
Fears (here we go again)
1. That I am different and I will never heal because of my underlying health issues and my constitution in general. And that this will trigger some bad genes to flip on-this level of stress.
2. I will miss out on years of my kid's lives ( I have already missed close to two)
3.The akathesia will never end and drive me insane
4. We are going to have to move god knows where bc I can no longer work
5. That I will never be healthy, strong and happy again
6. That under all of this I really have lyme disease (the lyme docs are saying that- I am in denial)
Ohhhh so many many more.
What scares me also is the lack of confidence that others have in my ability to do this. My one doctor felt like I might not be able to and that it wasn't a good idea, Another friend said maybe this is the new "normal". Hell. Fucking. No. If you knew what I felt inside you would know I cannot live with this as the new normal. We all have to adapt.
My last "Dark night of the Soul" lasted 8 years. I had pain for 8 straight years that took up the latter part of my twenties and early thirties. I was dying inside. My soul was dying. And in 30 days, almost like magic, it lifted. I was like a kid in a candy shop. When you have been sick for that long it's hard to believe you will ever be 'normal' or 'well'. I adapted, yes. But I could function. I worked. I did yoga. I dated. I built a business. I did it in severe pain. Yes, it's true. It started the minute I woke up until the minute I went to sleep and often kept me awake. And I would take that in a HEARTBEAT compared to benzo terror and akathesia. My body MUST heal. It must learn what NORMAL is. And normal doesn't include this kind of pain or suffering. I refuse to believe that.
Geraldine said something interesting. She said you know what all people going through this need? They don't need to be told that they have trauma or their inner child is wounded. They don't need to be told that this doesn't exist and they've never seen this before. They don't need to be told to snap out of it and do mind over matter. They don't need to be told they are wallowing. Or they must have some other medical condition (sometimes this does make it harder as in my case). They don't need to be told they should get back on for life. They don't need to be told they will never get well and what their experiencing is an anomaly. If it's such an anomaly then why are people putting up You Tube videos? Why is Geraldine and Bliss and Jennifer's work as important as it is? Why would thousands and thousands be complaining about PAWS only to be told that after 18 mos it's something else. Listen. Listen to your patients.
You know what people need to hear??
You will heal
This gets better and this is normal
That's fucking it.
I am going to say it over and over again because we need to hear this over and over again.
Support your loved ones. Be gentle. Bring them food, rub their feet, call their friends to come over, reassure them. Day and night and day and night. Over and over and over again.
One day it might be you that needs to be heard, that needs to be listened to. Doctors especially. Learn to listen and learn to LEARN from your patients not your textbooks. Believe them. They are telling you THEIR truth. Hear us.,
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.