I've been trying to work more and it's making me bone tired. Not just tired but physically depleted. My asthma has kicked in high gear today or air hunger or whatever you want to call it, and that never feels good. It's possible that my chinese food today had MSG despite me asking them if they cooked with it. Anyhow, what is done is done. Tomorrow is a new freaking bright and shiny day. Right?
I literally feel like I am a healthy person trapped inside a damaged body. I get out of the gate really strong once I am up from my dead drug sleep and then hit a wall by the end of the day. It's so hard to describe this phenomenon. I wish words would do it justice.
Last night I tossed and turned and tossed and turned. I know stress does a number on us in this. I really wish I had another several years to lie in bed and heal. But I don't. I have to try to take care of my children and do the bare minimum to survive. I just can't lie in bed and watch movies--although believe me no day is fun in withdrawal. But knowing you have an entire day ahead of you that you know you can't handle isn't fun either.
And the tricky part is that everyone says--- ohhh you look good! Oh you're fine. Or they say nothing and assume you had had a nervous breakdown and now you're fucking over it. Bullshit is all I have to say.
I was watching an old man cross the street today while I was waiting at a stop light. He looked happy enough. He looked like he was enjoying his retirement years. Maybe he was on his way to complete some mundane task or maybe he was on his way to freaking Yogurtland. I don't know. But regardless I remember saying to myself-- that guy looks so happy. He looks so at ease. Then I paused and caught myself. You NEVER know what someone is going through. Unless someone has their eyeballs falling out of their sockets or are in a wheelchair we just DO NOT KNOW what it is like to walk in another person's shoes. We don't know what their internal experience is like. What it feels like in their bodies day in day out. I know I hide it SO well. I am practiced at this. Practiced.
I don't talk about it that much except with my benzo people because who wants to hear this anyway, including myself. I'm tired of it all. It's been 3 years and counting.
Next Tuesday will be 9 months off.
One down, two poisons to go and a battered like hell CNS.
And all I want to do is sleep. Except we know that's the one thing that eludes us each and every damn day.
I've been trying to keep my stress low and do my daily walks. The mornings are so hard, I wake up and literally feel like death. Lately I have felt lots of fatigue mixed with terror and terrible terrible stomach pains. I've been juicing celery juice daily and I think that has maybe been a little harsh for me at the moment. It takes me a good several hours just to push myself out the door and get going. Today I did a bit of work from home and then pushed myself on a walk in the mountains. I knew I needed to be with my kids but also knew that if I didn't walk, I wouldn't be THERE at all.
I talked to a benzo friend who is struggling with a family member just wanting them to rush off these meds. This problem is so misunderstood that our family members, the ones that genuinely care for us the most, are impatient and pushing us to get off faster and faster than advisable. Of course everyone is different. There is no one size fits all. I regret reinstating twice, leading to major kindling and spending over 3 years on a toxic medication that I had only taken here and there for three months initially. But what is done is done. Here I am. I got a mixture of bad information from multiple sources both doctors and friends and family. None of it was helpful and none of it was right. I was badly injured and kindled and my CNS was sensitized. It would have been better for me to get off the damn med 3 years ago, get on gabapentin ( which I ended up on anyway) and pray for healing.......
Anyhow, there is only forward no turning backward.
I'm finding some relief at night. I'm not sure if it's exactly relief or relief that the day is over and that I get to sleep. Drug sleep but sleep.
Maybe all I look forward to daily is sleep. To be knocked out and woken up when this nightmare is over.
This is my place to vent, to whine and to complain. I try to be inspirational too but most of all I want to be me, and I want to be real. I've had some issues with some people complaining that I am, well....too real. Too honest or truthful about my fears, my dread, my future. I'm in my body and I know what I feel. I completely detach from my physical state which is pretty overwhelming. At nine months off I'm not sure I am feeling physical healing but I'm used to this. After all it has been 3 years like this already. I literally cannot remember a body that is out of pain or discomfort. I have to break my days into small manageable chunks or it will just eat me alive.
So that is what I do.
Juice Celery (ouch)
Work a bit, take care of any outstanding business or paperwork that I can wrap my head around
See my kids for a couple of hours
Talk on the phone
Watch a movie if I can handle it
Listen to music
Meditation if I'm motivated
That is the exciting life of someone that used to work 6-8 hours daily, do 1.5 hours of yoga, hike up mountains with my son's, go to dinners, parties, networking..... on and on.
So, I'm using the A word. ACCEPTANCE.
That's all I've got right now.
Almost 9 months off next week.
Am I getting better?
I wanted to address something that has been on my mind.
I heard Baylissa was going to have to close her doors due to cyber bullying and threats.
That's just about the worst news I have heard.
How is it that this one woman who has put blood sweat and tears into the work she does, day in day out, for very little money is getting TRASHED.
And I also feel that when people say she is "taking money from the sick" what do you expect from a paid professional who has graduate degree training, and thousands of hours worth of expertise?
Should counselors be doing the work for free?
Doctors should treat the sick for free too?
And naturopaths or chiropractors?
Why is the community eating itself when someone comes in to help?
Anyhow this was disturbing news to say the least.
She's a saint in my book. Of course, no one is perfect but her intentions and her experience speak volumes.
Please support Baylissa if you can.
If I could afford weekly sessions believe me I would talk with her daily if I could.
I just know we as a community can do better and put our energy where it belongs---to helping others and mostly self care and healing ourselves.
We don't know what the future brings, whether we heal fully or not. I can't say because I haven't healed yet and I am a complicated case with multiple medical issues and Floxing and adverse reactions. Not everyone is in this category and I think the simple benzo cases do heal.
I'm praying that I do too because god knows, I can't live like this much longer.
I'm holding on though and I hope you are too.
We are not the body.
A good wise friend of mine told me that today.
She suggested that I meditate on the collective, on the idea that we are one and to loosen the hold the body has on me.
As I watched her effortlessly get ready for her day on skype, I was pleased that I didn't have that all too familiar envy. I want to be her. I want to be him. I want to be anyone and everyone but in my own body. Everyone who has been in the throes of med withdrawal has uttered those words, along with " I wish I were me again".
So it was refreshing for me to talk with her today, to get swept up into her adventure and her life with zero focus on my lack. My lack of ability to travel, work, walk freely, exercise, think, love, and so on.
I didn't focus on my LACK today but let myself just be engaged in her story and her experience and let my imagination take me to Florence where she was on a fabulous journey. I didn't get caught up in the future. Will I ever travel again?
Or the past... I remember when I traveled to Italy and was in love.
No, I stayed so present. So present I enjoyed every last drop of our conversation and connection.
No one has a crystal ball. No one can know what the body can and cannot do. Best thing is stay SO present and if you do let your imagination get carried away with you then dream big. I allowed my nervous system to be on a vacation in Italy. I let myself be her and feel her joy and excitement. Though my reality was much different as I gripped my head and squinted my eyes because of the massive head pressure I was having , I chose not to focus on that fact in the moment. I made a choice-- love or fear. And in that moment I chose love.
Anyhow, I know it's easy for "civilians" to give advice. And I know it is frustrating as hell. But here we are. These are the cards I have been dealt and we will see what I make of it or where it takes me.
I saw my psychiatrist the other day after not seeing him for about 8 months.
He had been initially trying to help me get off benzos but when I hit a wall (to put it mildly) he transferred part of my care to another doctor in town that specializes in very complicated low dose benzodiazepine withdrawal. Both are pretty fantastic men. I think that my case actually changed the prescribing practices of my doctor. He's always been a seeker and a thinker. He tested genetics way before it was cool. He discussed gut health and mitochondria before I could even pronounce the word. He is one of the good guys, believe it or not.
When he took me into his office and asked me how I was he began to tell me what a relief it was to see me with my life force back. He told me my spark was back and actually began to cry as he talked to me. I was floored by his empathy. I think it's important not to put everyone into the same category because there are some good guys out there and he sure is one of them. He told me I never had to convince him of my pain, he could see it in my body, in the way I moved, the way I talked and couldn't even finish a sentence in my terrible akathisic state. The truth is I don't feel a whole lot different guys. I am 8 months off this week.
I have completely separated from my body at this point. It's the only thing that allows me to survive the myriad of symptoms that I feel on a daily basis.
I am not med free yet. And while that of course is my goal, I am by no means going to rush the process. I'm protecting my brain and I see NO benefit to rush off drugs and be in a fit of akathisia for the next 2 plus years just to say I'm
'clean" . I hope I'm not one of the ones whose akathisia is permanent but I really truly don't know. And I am beyond terrified at this point to find out.
My children need me.
For them, I need to fake it. I still think they are pissed I no longer live in the home. But on a day like yesterday where I could barely muster the energy to stand up and brush my teeth. I skyped them and said goodnight to them online. And today when I had more power, I sat and read books with them together.
These moments are precious. Every moment we get to do "normal" things is precious. This moment to moment attitude is what is keeping me going at the moment. I'm not being positive, I'm being real. No one in the throes of akathisia can do it gracefully. But we can really savor small minute moments of grace that this process allows us. Moments between people, including our doctors, that remind us we are all in this together and we are all one.
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.