Ok let me start with the good. Yesterday was a window, I mean compared to the two prior days. I got out and walked. I kept saying to myself I want to live, I want to live, I love life. as I walked and walked. The two prior days I was in white knuckle terror. My hair is coming out in clumps, I am really at a place where I wonder CAN I DO THIS? I MUST.
I am holding at this 1mg mark. I am considering going into a hospital for this last bit or at this point restarting my taper because holding for this month has done ZERO to stabilize me.
I am doing little things for myself. Every second I instruct myself on the next task at hand. Ok... get up and take a shower. Ok, give your kids a bath (can barely be still for any of it). Ok, get out the door. Eat your lunch. Chug that green juice down.
I am getting worn down. I can't stand looking at happy pictures of myself. It all feels so far away and so out of reach at the moment.
I know. I am a lightweight I guess. I thought I had a high tolerance for pain. But I am in terror most of the day. This feels impossible. I really would kill for the fatigue people talk about over this terror. This goddamn TERROR over NOTHING. It just accompanies me throughout the day without a break. I managed to deep breath and get into somewhat of a relaxed state using meditation ( I am not able to do a sitting practice now so am doing it lying down). Every second is an attempt at survival. I mean what would I do if I were a prisoner of war? I would have to DEAL. This is like being in a torture chamber of your body 24/7. It literally HURTS. But I know it could be worse, much worse. God doesn't give us what we can't handle huh? I am not so sure about that.
Today I listened to bineural beats and also guided meditations for recovery.
I will attach their links.
I still hesitate to write until I can write more optimistic posts and tell you which way I have decided to go.
I feel very hopeless to be honest. I don't know if I have the fortitude that Baylissa and Jennifer Leigh have. However, the thought of going back on these medications for life seems horrid too. I mean I will NEVER have a full life on them and I will never be me. But the pain. The inner torture and torment is intense. How long and is it possible to heal this?
Today my little one looked up at my husband as I paced around the house and said "Why is Mommy sick for so long and maybe she will be sick forever"
God, This is breaking my heart. Every piece of it is shattered and yet I can't feel or connect to anything but my own consuming suffering at them moment. I am self absorbed to the upteenth power. Self consumed with terror, akathesia restlessness and all that great benzo stuff. Today add in back pain to the mix, hair loss and acne. Hooray for looking and feeling sexy. Right now I am willing to give everything in my house away to make this pain STOP. Just stop.
It's hard to believe one month ago I was doing ok. I thought I was out of the woods and was going to proceed with caution down on my taper. I don't know what I did wrong, Maybe nothing. Maybe I am just unlucky with this. I regret reinstating one year ago when I fast tapered. Others have walked this path. They have. I always think I am the WORST case, noone is suffering 24/7 but they have and they are and they have made it through.
Good news: I am not bedridden. My problem is too much energy, not lack of. I kind of feel wired and sooooo tired at the same time. I hope a string of windows are around the corner. I gotta get off this last bit. I thought it would be smooth to avoid a crash landing but it doesn't look that way at all. It feels unmanageable and yet where do I go where they won't make it WORSE. I don't want to wake up in a nasty hospital or a clueless rehab at 6am to go to meetings and sleep (or not sleep) in a foreign bed. If I thought it would help to go somewhere I would. But where?
All my attempts at distraction have not worked sadly.
I watched about two minutes of a movie but started becoming jealous that the actors weren't in benzo withdrawal.
I think I should probably cool it on the online entries until I have something useful or helpful to write. :( Sorry Guys. The struggle is REAL.
I am a broken record to everyone in my life, including myself.
I have had some relief talking to Baylissa a couple of times and reaching out to Jennifer Leigh. These are amazing warriors in this lonely fight. My husband says, get off the forums, you have read every post imaginable on there. He is right. It's not serving me anymore to be on there but I yearn to talk with others on the same path. It's comforting. One woman wrote me when I begged her to tell me how long she had akathesia for. She said she would not answer that question until I was healed. God. I like her. She writes me comforting yet tough emails. She says she was polydrugged for many years. She is concerned that I keep searching for other things wrong with me and cannot understand why I won't accept that this is JUST WITHDRAWAL. And I don't mean JUST.
I think the reason for that is that I do genuinely have other medical issues that came before benzos and were made worse by them of course.
I am just trying to put together the pieces of this medical puzzle but I know I have to just STOP.
Today was slightly better than yesterday which was a horror show.
I had terror literally from morning to night. I could not wait to go to sleep. I cannot endure this level of pain day after day but I have no choice but to....acceptance. Stop the fight. Stop the struggle with shoulda woulda coulda. I am where I am. I am not going to get magically better. Am I? I have to walk through it. On a day like yesterday it seems nearly impossible. I want to be put out of my misery and wake up in six months fresh and new. I have realized I cannot tolerate getting emotional--neither positive or negative--all emotions rock the boat right now. I need to stay steady and zombie like. My CNS feels so so raw. It's hard to describe. It is burning and raw and sensitive. I look ok on the outside though my housekeeper said--something is wrong with you, what is it? I am looking grey and sullen these days. Sad, worn down, Hair falling out in clumps.
I meditated today for the first time. I feel so worn. So alone in this. I need to keep strong as the fight is just starting. It's just beginning. I am not off these poisons yet. I don't know if I can do it honestly. I honestly don't know if my body and mind can do it. My heart is thumping and it feels like there is an elephant on my chest. I burn. I feel depression and I am not even a depressive. I prefer that to the inner restlessness and TERROR. Is this normal? Is this extreme? A doc I called said " I don't know what all that protracted withdrawal is online, withdrawal peaks at 3 weeks and is over". He is a benzo wise guy too. Huh? He suggested I get back on a higher dose and stabilize, get off other stuff and start OVER. I can't. I have come this far. I have tapered for 8 mos from 4 months usage (I was kindling these last 3 years though with sporatic usage and twenty years ago took benzos for interstital cystitis). I never knew what a BENZO was. I was prescribed this medication for a bladder condition and I took it here and there here and there with no issues for so many years. Until NOW. Now I have encountered a beast. My symptoms sound similar to those that have been on for 20 years or at high doses. I think had I not had a CNS injury from a steroid two years ago this would be a much different story. I wonder if I am screwed. Will I ever be ME. I am a broken record I know.
I walked in the rain today.... to get my damn prescriptions but still
I am drinking green juices daily.
I meditated deeply for an hour
I played a game with my kids
I struggle each and every second of every day. It's so so hard to explain this.
I am trying to ignore my physical sensations but it is very hard. Just accept that this is withdrawal and there is NOTHING else wrong. I have done loads of tests. Some more recently. I am praying for all the warriors out there. I fear my genetics will get tipped by this experience of stress. It's stress I cannot control. Literally. I am trying. No more crying, no more hysterics, I have to stay steady. I have to stay strong. I have to put one foot in front of the other. Cuddle my kids and my animals and my husband. Forget my financial fears because right now I have to just get well. Period. Pray Pray Pray...
Good night my friends.
The day escalated into that horrid terror feeling. In my chest/throat. Complete head pressure like it's a lit up bulb blazing and blazing ready to fucking explode. That's what my nervous system feels like. Sometimes the bulb gets hotter and other times it cools off a bit. But it's always a very HOT fucking bulb pulsing and burning like a mother fucker.
So, my neighbor and wonderful friend said, look, when you feel like that do some jumping jacks, come over, shift the energy, do something, anything different just don't stay alone with it. I listened. She's wise. She has common sense. I went over to her house and bitched and moaned. Ate some crackers and cheese. Felt the terror. Oh it was still there, yup. When it comes on it's not about willpower or deep belly breaths or any other kind of coping tools I have in my tool box. Nope. It's just fucking ON FIRE. period. And it usually stays that way for hours, if not the entire day. It's a load of fucking BENZO FUN. Fuck this shit already.
I pushed myself to go to a recovery meeting. I didn't want to go. I am in a room full of mostly hardcore addicts. And not to compare suffering or anything but I have to say, I am physically suffering the MOST of all of the people in there. Even those fresh out of rehab for hard drugs or alcohol. Their fucking GABA isn't jacked up or maybe it is but they process it much differently. How can that be?! When I told the group members that they are tanks and hardcore, one guy just looked at me and said "what you are going through is hardcore--you are hardcore in your own way". Okay, I guess that's true.
The GABA are the BREAKS in your system , the thing that settles you, the thing that allows you to take naps and doze off, yeah, the thing that allows you to sit down, sit still, focus, settle. Yeah, that shit is GONE. I meditated because that is a part of this meeting. Buddhism and recovery. It's a neat meeting and a neat concept. Except that damn terror was with me the whole time. I could barely focus.
I wasn't terrified of ANYTHING specific in my environment, I was safe and if I could exit my body I could enjoy every moment, every share, the tears and laughter. But the terror is a beast. It's preoccupying. I wanted to make it my friend. Hi, terror. I see you, I feel you, I am not scared of you. You are just like an annoying itch, that's all I won't give you more power. I just won't.
I shared and broke down hysterically. Embarrassed. Like I said, me, the accidental addict, the lightweight, I am the biggest fucking basket case in there. My chemistry has gone awry. It feels that way. The no brakes is a terrible terrible sensation. But, it's my friend, oh I forgot.
So, I shared. I cried. I shook. People listened. They empathized. But what I really want is just relief. Terror didn't leave my side but I stood up to it today. I said fuck you and spit in terrors vicious face.
I shared with a friend, in a meeting, I cleaned the house, I picked my son up from school (god that was hard acting like a normal mom). Again, I look normal. I know I do. Now that the neurontin is on board it's covering the storm of stinging burning pain and horror. But it hurts. It hurts deep deep inside. Like a burning bulb that won't turn off. Burning and fierce. Inner torment that is very very difficult to express or describe in words unless you have felt it yourself. Then you say, Ah, I know that burning terror, yes. I know it. And I promise it will fade away one day. I promise this isn't permanent is what they all say.....this too shall pass... this is temporary (if it doesn't kill you).
A man came up to me after the meeting. He shook my hand and told me his name. He said, "Listen, I am going to be back in several weeks but I wanted to give you an affirmation to keep saying to yourself". I am open. Like I said, I am ready to do a fucking black magic ceremony and stand on my goddamn head for the next year while eating dog food everyday. Just. Make. This. Pain. Go. Away. Now.
So, my affirmation was this---- "I am safe and I am immortal".
He said, "keep saying that until I see you the next time".
Will do my friend. Will do.
How can it be that I live in a country where I paid 30 grand in taxes last year but fucked myself out of disability because I work for myself? I am scouring Craig's Lists looking for things to do from home. But I am not well enough even to do those things. Any ideas? I am going to ask around. On days I can think I can do something from home but there are other days I cannot. I cannot sit still, how am I supposed to think? I am not sure what we will do as a family. We have no family resources, we have some limited savings. I was counting on SOMETHING through disability or unemployment but NOPE. nothing. Let the universe take care of me and figure out what the hell to do next........ come on already...
I feel hesitant to keep writing. I want this to be an inspirational blog not a morbid one. I wanted positivity and coping tools to shine through. I wanted to glide off this poisonous medication and say, "See, If I can do it, you can too". I don't know anymore. Crushing depression alternating with inner restlessness/akathesia. I prefer the down, depressing feelings though they are completely foreign to me having never been a depressive. I love life yet now if I manage to get out I feel tons of envy towards people in good health. People able to sit still. People able to focus, organize their thinking, concentrate, laugh, not have a well of symptoms that interrupt their functioning. And I am not even OFF YET. That's the scary part. If this was as BAD as it would get, with the help of this damn neurontin I could manage. Several weeks ago, I couldn't manage the pain. The pain was 100 on a scale of 1-10. I am not exaggerating. People before my have walked this path. They have gotten through it. I wonder if I am strong enough, I really do wonder. I went to an idiot neurologist yesterday as asked to by my doctor. It wasn't helpful as usual. I won't even go into the details, but they know nothing about akathesia. Or they know something about it but don't know what to do about it. Time. Time. Time. Time.
I am going to a recovery meeting tonight if I can. It's sort of ridiculous but I am going. I wish I was built like a tank like those guys. They can guzzle anything and be good in a week or two. Iatrogenic injury is much different. Misunderstood. Hidden. Not talked about. Going to rest now. Like I said, I hesitate writing.
My friend wants me to ask a guru in India to do a black magic ceremony to cure me of this. Ha. Whatever works. Whatever works I say........but let's stay grounded in reality. One. Moment. At. A. Time. Everything is temporary. This body is temporary. This experience. My life as I knew it. I want to go back and rewind the clocks so badly. So badly. Never take for granted a single moment you can SIT STILL. Just sitting down. Being still in your body. A pain free body that isn't exploding on fire. The bliss of that.
Today was a bit of a turn around. Ups and downs. I woke up UP. While that was a relief to the catatonic feeling I had yesterday, it usually means that this up energy keeps going UP UP UP into terror and akathesia. I put it to work. I cleaned. I paced. I went to yoga. I went to yoga for the first time in about a year. I just told myself GO, you can always leave the class if you don't want to be there. I feel sad going into a studio that brought me so much happiness because I feel my body has been invaded by body snatchers. But I went. AND I got my nails done. Although I was antsy and uncomfortable I did it. And I felt better for it. I have been researching brain foods that can help without having to take supplements. I joined a fb support group. It made me sad to read the stories on there. And scared of course about what lies ahead. Everyone on BB says just get off the 1mg as soon as possible, while others say, hold hold hold, then taper. I was given instruction to up my neurontin because this instability is a sign that my body needs more. Ugh. Reluctant. Can't I heal through food, or binaural beats or biofeedback or a fucking magic fairy wand? Where is that wand. We all need some fairy dust sprinkled on us. Taking it ONE MOMENT AT A TIME. I am not thinking about my career, money, stress, what lies ahead on this path. Just. One. Step. At. A. Time. One foot in front of the other. Literally. All fucking day. It's called Akathesia. Ugh.
That's all we can do.
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.