A friend and neighbor called me out today. It was a much needed wake up call. She said I was isolating and in my own world, unable to watch TV, listen to pod casts or watch a movie or socialize with others... What she said was right. Several weeks ago when I was slammed face down into the cold concrete of acute withdrawal I couldn't leave my bed. I was in horrific pain. Chest pain, akathesia, terror day and night. I could not function, read, talk, eat, only pace and beg for freaking mercy. I decided I had to do something and started neurontin oh so reluctantly. It felt like life or death. Today I am somewhat more stable. I had a horrific night with a hypnic (?) jerk or seizure like jerk that jolted my entire body. My face was lit up all night until maybe 4am. Today I actually felt ok but I dread going back to that bed. I can't do that again. Today I reached out. I sat at my neighbor's house and talked. I texted with my BB buddies, I went to the grocery store with the help of my husband. I forced myself on a walk even though I felt like I was walking through molasses. I researched a bit then stopped. I picked up my one son. I kissed and tickled them and wrote them love notes for their lunch boxes so they remember their Mommy. I want them to remember who I was, who I am, and who I hope to be for them again soon. I am trying to heal myself with food. I went to the lab for more blood work. I made an appt with a therapist. My husband just kissed me good night and said "Today was a good day". I said " For you?" He replied, "No, for you"...
It was a tiny relief today and I will take it. I took my medicine kinda sort of on time ever so reluctantly with the tug on my sleeve that keeps asking "when will I be me again, when will I be me?" Don't I have to uncover the stormy beast of akathesia in order to get well? I need to get off these medications. I need to be free like I have been for close to 40 plus years. I found myself worrying about having a permanent movement disorder or that this jerk last night was my nervous system heading into some weird tardive like episode. Then I said STOP. If so, there is nothing more I can do. All I can do is trust myself, take doctor's guidance (with a grain of salt since they got me in this fucking mess to begin with) and press forward. Not backwards. Only forward.
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Although this blog isn't about withdrawal induced akathesia, Angie and some of her other posts describe the horror of this condition quite succintly. It's not mania, though it can look like it. It's not psychosis, though it can make you feel as though you are going insane It's not mental illness, it is a physiological imbalance caused by dopamine/serotonin imbalance from my understanding. I am not a doctor. Not even close. I know they say, stay as clean as possible in order to heal. It's hard if the withdrawal you are in is so godawful and painful that it is impossible due to lack of sleep and severe nerve pain. I think we each have our own path. If there is a medication that can help, take it. I do wonder about the efficacy of B6. Mine just tested pretty low. Instead of taking a supplement (which I am at the moment deadly afraid of doing considering the fragility of my CNS) I am trying to eat loads of pistachio nuts, other B6 rich foods. However, if you can't absorb it or are born with difficulty doing so am not sure what to do. I am having my levels checked again in the next several weeks. I will consider supplementation after that. Who knows. For all we know that could be the ticket to freedom. Or at least less suffering. Fuck, I would shove almost anything in me to make it stop. As Jay Lamb said " I'd have cut both my balls off to make it stop" And another board member said, " I would have sold my entire family into slavery to make it stop" I am glad Jay was able to have a sense of humor through it. One day at a time. One moment at a time. If anyone ever reads this, please feel free to share success stories and what has worked for you. We need some positives on the internet please!!! It's all doom and gloom and horror. I am sorry to be adding to that. I want to believe all the experts who actually BELIEVE and UNDERSTAND this condition who say it gets better and we all heal. Yesterday I felt god, there is no way out of this. I have to break it down to very small manageable steps. We do heal. Our brains and bodies want to return to homeostasis. ] It feels strange how quickly I left the world. I don't talk to many people (besides my benzo friends), I no longer work, I can't do play dates or shopping or driving to the movies. Am I just putting blocks up? Should I keep pushing? I try and walk outside each day. I feel very little pleasure or joy. I don't want to scare anyone reading this. I can't seem to force myself to do things as I normally do. I am a dooer. A go-getter. I am not a homebound person in any way, shape or form. But the fatigue has washed over me this last week. Maybe that means I am 'stabilizing" as it is a welcome feeling compared to the akathesia. But it's still not me. It's still a medicated coat over a deep wound. Akathesia. I still have this last 1mg to get off of. How in the world am I going to do it?
The thought of re-entering the hell from four weeks ago seems unimaginable. I am going to attach some funny posts regarding akathesia from a writer named Jay Lamb. Now, let me make something clear. There is nothing,I mean NOTHING funny about akathesia. It's a medical emergency. It's life or fucking death. It would bring the strongest of us to our knees--and quick. So just wanted to make that clear. Bliss Johns said to me today " It goes away, it will, it's normal" I wish I could fly to her home and just park myself at her doorstep for the next year. We need a place that is just like that. Filled with Bliss John's clones, kind and effective doctors and nurses, healers and bodyworkers, professional cuddlers and community that allow people in benzo withdrawal to heal without shaming them, diagnosing them ( I was told I looked psychiatric just a couple of weeks ago while in terror/agony and akathesia and last year as well making me all the more confused as to what was happening to me---now I have a name AKATHESIA)... I wish I had understood some or all of this a year ago. Yes, I have learned so much, but at what a cost. It's cost me everything. Everything. Attachment to follow. Stay safe everyone. Peace. You never win a fight with reality.
The other day I went to a meditation class. I couldn't sit through much of it but I heard those words and my heart ached. I so want my reality at the moment to be different. I want to go back to my job, I want to bounce up from bed, make my kids breakfast. I want to help them put their clothes on and drive them to school. I want to come home and get excited about what I am going to wear for work, do my hair, put on some jewlery and get ready for the day. I want to be part of the world again. I don't feel part of the world at the moment. I am part of a benzo underground. Part of a dark nightmare that I am waiting to wake up from. A friend said " You are doing better than you think you are". No, No, I am not. I can fake it. Inside I feel the terror, chemical anxiety, jaw tightening, chest pain, akathesia, morning terror. Where am I? I feel lost. I don't feel like me anymore. Today I sat through a whole movie. It was a good day. I have had several (3-4) "better' days recently. I don't know why. I don't know if the akathesia horror will return. I am so so horrified by the last 5 weeks. By this last year and a half that I have micro tapered and probably doing everything in the book wrong. I am trying to stay strong. Today I cuddled my children. I tickled them. I smiled. I hope they can feel my love. I hope I can be whole again soon I want my reality to be different but it's not, and it never will be. I am in this. And I have options: 1.reinstate 2. detox the last 1mg 3. hold here and taper slowly. Endure??? at the end. I got a taste of it. It was the most horrifying brutal torture I cannot even explain. I feel like I lived through a fucking horror show these last couple of weeks. A knowledgeable benzo friend said to me "It's not just 1mg, you've been tapering now for 1 year, on it for 1.5 years" But I have had an on/off history, I have health issues and I am downright scared. The terror I felt from morning to night for one month doesn't seem bearable. I know Bliss Johns lived it, Jennifer Leigh lived it, Matt Samet lived it. But how do I endure the akathesia? Everyone just says " Oh it's your anxiety" People,, Listen. This isn't anxiety. Its something entirely different. I want to be heard already. If I am heard maybe I/we/others can be helped. I want to write positives. When akathesia hits there is no positive. I am sorry to say this. It's impossible. It's painful. It's agony. I hear Bliss John's words " It's normal, It's normal". Today has been ok. I made it through a movie. I distracted myself long enough to sit through it. The old me. The old me that loves movies, books, yoga, life ohhh life. Yes, I love life. But I am fighting my reality and I know that will only bring be suffering. Acceptance. Working on deep acceptance over here. What about you?? |
AuthorSomeone 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. Archives
November 2018
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