,This whole day was difficult.
I was listening to a you tube about someone in benzo w/d and they said one of the things they needed to avoid was loud noises, and the sounds of children.
Welcome to my life.
Today while I am grateful my husband is getting to work from home I find it nearly impossible to do the basic tasks of cooking for myself or getting out of bed, not to mention taking care of my children and the constant cleaning and wiping that is required every moment of every day.
Yesterday I had a friend come over and we managed to go for a walk. She is convinced I am allergic to this medication. She herself struggled with sleep, took temazpam for a year and just got off. No issues. Not one.
So I am getting concerned.
I think I genuinely have overlapping issues--possible lyme, definite SIBO and other health and immune problems that I had WAY before this mess. Why do I belabor this? I am trying to solve this puzzle that noone (meaning hired professionals) are interested in solving.
I contacted a doctor in San Francisco who deals with brain injuries and helped a friend of mine recover from a very mysterious brain injury or infection.
I wrote him the basics of my case and he wrote back " If you tested positive with igenex you are positive". Fuck. I was reading an online account of a woman, similar to me, with very infrequent usage who ended up in the ICU with seizures. She ended up tapering off and suffering greatly but discovered (with CDC testing positive) she is POSITIVE for lyme.
So, what's the truth?
I don't know.
Why is it important?
I fear if I don't deal with my underlying health issues I may be one of those horror stories that never get well.
I know it's benzo brain talking to me but there is also truth to it.
Will I ever recover? Even if I have these weird infections etc etc etc will I get well? Is now the right time to come off this medication?
I am petrified.
What I dealt with two mos ago wasn't like ohhh some looping thoughts and morning anxiety. No. It was something that I can barely speak of. So why is everyone in my life asking me why I am so hesitant to restart my journey back down to zero? Because that was quite simply the most horrifying two mos of my entire life. And again, post jump I would expect it but still on medication? I was taken aback. Something else feels wrong. Maybe we all think that way.
I am trying not to build this case but I don't want to be an idiot either about what clues are there that I have ignored YEAR after YEAR. The air hunger, the pain in my chest (dating back ten years), the stomach distress, the weight loss despite eating like a pig, consistently low lymphocytes, the infections, catching every cold and virus out there, the headaches, the lack of sleep, shortness of breath, heart palpitations, on and on...
I don't know.
I told my husband if something happens to me, autopsy the shit out of my brain. I want the fucking truth.
I want to stop thinking, talking symptoms. I want to be free.
I want to bounce out of bed, go to my favorite yoga class, put in a nice day at work, pick my kids up, have the energy to pick them up, wrangle them and take them for dinner or ice cream or to a play date. I want to feel like I have energy again, Not chemical energy, Medicine masking what is underneath but true, genuine energy like I have had before. Not so long ago. The ability to yawn and get naturally tired and go into bed cozy and warm.
I want to go rollerblading, ice skating, to the beach, on hikes, on dates, to the movies, in malls, I want to shop with pleasure again and talk about things other than THIS.
I want to be free and put on my makeup and carefully choose my jewelry and enjoy the mixing and matching of my outfits. I want to try on shoes and do my toenails and get my hair done and enjoy a massage or a spa. I want these things. I don't want perfection. I want to be in life.
I WANT TO BE IN LIFE.
Someone on BB interestingly admitted that he/she didn't know who they would be without this BB community. After being a part of it for so long, who were they in fact outside of the benzo community? How would they re-integrate after being a part of it for so long? Would they feel a void? Do they need to keep thinking, talking and reliving symptoms to feel a part of something. As cruel and horrid as this is, he/she admitted it gave him/her a sense of belonging and without it he/she would have no purpose.
This was honest.
I don't know that I fully relate because I liked my life. Though I was burnt out at work and felt trapped in the day to day, part of the burn out was that I was not feeling well for so long and hadn't slept more than four hours per night for years. It was wearing on me. If I had the energy I would take courses, I would go on trips, movies on and on. One year ago, during my first fast taper when my body was still stronger I could do more. I felt I was going to win this game. I mean there was no reason for me to think I wouldn't. I NEVER THOUGHT THIS WOULD HAPPEN TO ME. I fully expected to get off this pill in six weeks. Done. I had NO idea what I was in store for.
So, I wasn't expecting the crash that happened exactly one year ago today. I should have kept going with the crash. I don't feel a longer taper helped me. Not at all. Once I fried for 4 weeks and my previous frying with steroids the game was over. I should have just ridden it out and tried to heal from there. I should have been warned. Someone should have understood I shocked my CNS so many times and too warn me to be careful. We all had no warnings. When I read other stories of people put on obscene amounts I am just aghast. I don't trust the hospital. I don't trust John Hopkins or Mayo or any of these 'reputable' places and doctors from Harvard or Stanford. I called one 'reputable' doctor who simply told me I was 'trying to control the process and there was nothing wrong with my staying on the benzo for the rest of my life'. Yes, he certainly believed this to be true. I should stay on this neurotoxin for the rest of my life. GREAT. How can I trust a medical professional again honestly with this level of stupidity??? We are on our own, plain and simple.
I think this taper actually harmed my body MUCH MORE. I know that is unpopular, but a reinstatement doesn't often work. At least it did not for me. One doctor warned me I'd be fucked at the end of this taper, and he was the ONLY one that was right. I should have just gotten off, even if that meant closing my business right away and getting on adjunct meds. I just couldn't think straight as many of us can't when we are in this place. And I couldn't accept that this was happening. It just didn't make sense. It just didn't and it still doesn't since I used so infrequently and my symptoms were so severe.
Anyway, my life has been on hold. Completely. And yet I "look" normal except two mos ago I looked anything but. I look like shit actually. I was normally quite vain but now live in yoga pants and sweatshirts on days that I leave the house.
I don't know how to explain the severity of my symptoms. The severity of this chest pain, nerve pain and frying feeling and my akathisia. It's BAD. WAY WORSE then last year.
I can't wait to solve this puzzle.
To be that person I talked about. It felt good just writing about her and all the fun things she would do-----Let this nightmare lift already.
Today when the overhwhelm was too much but I was way too tired to walk I just got in my car and DROVE. I drove for nearly two hours. I made a wrong turn somewhere and ended up on the freeway in traffic. So much for a relaxing drive. But I had to get out and for restlessness it is kind of the next best thing to walking. I am sitting here at 1am writing with my coat still on. I'm a mess, what can I say.
Tomorrow is a new day. Tomorrow is a brand new day. Set some structure to your day and ask yourself ---What can I do for my recovery today???
Today I drove. I drove and drove. And ate a hamburger.
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.