This is the second time in my life that I have had an "invisible illness".
The other day I apologized to my childcare worker. I have been hibernating in my room, barely coming out to say hello. I just couldn't bear to face anyone or anything: my children, my husband, no one.
I started getting nervous that she was going to get another job as she has taken on more hours in the mornings when I might need her. Anyone who has kids knows that finding a good childcare worker is like finding gold. You hold them dear and dread to hear the words " I found another job, I am giving my notice". Even when I was healthy, it was a large task--interviewing tens and tens of girls trying to find just the right fit.
Early on when we had our son we had a several childcare disasters that left us so scared we put cameras in our home (we always told the people that worked with us about this ahead of time). We worked with one woman who I had to help get into a domestic violence shelter. She would come to our house with bruises and lose her money, and show up hours late. The next woman would fall asleep on the couch and lie blatant lies and her hands would shake. I now wonder if she wasn't on benzos in retrospect.
Since then we have been wildly lucky and vigilant about who we have let in our home. They have all been gifts, each with their own personality and specialities but equally important to our family.
Now it's hard. This girl has never known ME. She has never known me healthy or well. This is such a private struggle, such an invisible illness that it would take a certain special kind of maturity to possibly understand the depths of this.
In fact, my nanny does understand. Her own father has struggled with opioid addiction due to chronic pain and she has seen it rip apart her father's health and well being.
So, I confronted the situation straight on, as is my nature, and she assured me she didn't take any of my lack of cheeriness personally. She said she was trying to understand an 'invisible illness'. It is hard for anyone to understand. Why isn't mommy doing more? Why isn't she giving the kids a bath? Why does she need to lie down or be by herself all the time? Why are her eyes red and swollen? Why does she sleep during the day and is up all night? Why is she pacing and visibly in pain and uncomfortable? Why? Why? Why? Ohhh the terror that's why. Ohhhh the burning that's why. Ohhh the insomnia that's why. Ohhh the restlessness that's why. Ohhh the paranoia and agony that's why. Ohhh the pain that's why. Why why why... I ask myself that everyday.
In thinking about my doctor's appt the other day I realize how utterly irresponsible it was for her to say those words to me "This can be permanent you know that right?". For many that would be enough to throw themselves in front of a bus. Just like the vet told us to let go of hope for our little pup, he beat it and survived despite the odds were against him.
My first invisible illness was IC. Who sees the burning urethral and bladder? The agony and humiliation that that brings? No one but those suffering. Relentless pain. And yet I would take that over this ANY DAY OF THE WEEK. YUP.
To all those suffering an invisible illness, I hope we/ you are met with empathy and understanding. Kindness and curiousity. Hope and solutions. Light and love. Inner strength and persistence. Fight the fight of your lives.
All of these energy healers are recommending SALT! What's up with that?
Seems like an easy fix to negativity and withdrawal huh?
If you are spiritually inclined it might speak to you.
I attempted this last night.
I have realized I am not going to put the pieces of this puzzle together.
'We don't know what tomorrow brings
There is only today.
I have gotten up and taken a shower.
I am taking my son to the grocery story.
I said this intention this morning. Please PUHHLEEZ clear this negative energy from me. My intention is to ONLY allow positivity in my life, in my heart from this day forward.
I asked for a dream that would give me insight, clarity, hope..... that isn't quite what I got ( I won't repeat my dream as it was quite the nightmare) but I hope it is my subconscious PURGING negative fears and thoughts.
There are not answers.
My visit to the neurologist proved to be traumatic and destructive. On my way out, hysterically crying and kicking the elevator of the hospital I frantically dialed Baylissa's telephone for reassurance. I was pleasantly surprised that she answered only to reassure me. Thank god for her work.
The neurologist seemed determined to scare me, and good.
She said my akathisia could be permanent. It wasn't directly from a benzo ( I had initially had it post steroid and when I started an SSRI for a day but it went away 3-4 days later) and that "you don't have a healthy brain so this can be permanent". Over and over again she talked about my "unhealthy brain", my genetic predisposition towards this due to family members experiencing akathisia and also the length of duration that I have had it. The longer you have it the harder it is for it to go away is her stupid opinion.
I reached out to a fellow benzo friend whom I trust and she told me to discard this information.
I honestly believe sans akathisia I can manage almost anything.
She recommended a spinal tap and also being evaluated for the seizure like activity I am having.
This is why I don't want to go to doctors.
I lowered my expectation for the visit, and didn't think it would be productive but I didn't think she would be willfully cruel to me.
She kept questioning and testing me "What do you do all day?:" "what do you mean you can't walk well, why not?". I felt diminished. I kept my calm and bowed to her ego. This is at a large teaching hospital in the area and if I talk back I am screwed. So I surrendered. She proceeded to tell me she was a big so and so at another hospital on the east coast and just arrived to LA.
I remember reading Indigo's story on BB and he talked about a wonderful neurologist and healer that saw him through recovery, after multiple others telling him " he was doing this to himself".
The prickling and head pressure has been so intense. I feel certain I am dying. Maybe it's the benzo die lie, maybe it isn't. Doors feel like they are closing. I am going to close the door to my heart and focus on the select few that I can lean on.
As Jennifer Leigh writes, people who are not in this or who have not been in this cannot possibly comprehend it's horror. There is no way I could have.
The sheer terror, the insane heart, lung, head, stomach, anxiety, blackness etc etc etc issues.
I feel like my mind is so ready to be well and get on with my life to help others. My body will sadly not cooperate.
I have to pull myself up and keep going. I don't know what the future brings.
I want to believe that the body and brain can heal. Why couldn't this heal?
To have multiple doctors say things like " you aren't going to make it" " You don't have a healthy brain" is discouraging beyond words that I can describe. I know this is a long road. I am burning throughout my entire system. The doctor of course was turned off because I brought in some blood work that I hoped she could do first to save me from doing the spinal tap she recommended. I had something going on before this. I was certainly not like THIS but I had some virus or something knock me off my feet two years ago. I am determined to figure it out and to get well. I was meant to be healthy and free of debilitating pain.
Baylissa said she had seizures as do many others.
I want to believe these episodes are not permanent but the process of the brain healing.
Monica Cassini was in a bed for several years getting off meds in this process.
I don't know if I have it in me to withstand the akathisia as some have for years, with children, with responsibilities. How is one expected to cope with this level of iatrogenic illness?
It is true what Jennifer Leigh wrote on her recent blog. Many friends, family, many many people just scatter away. The ones that are left are the ones that really matter, the ones that have dug deeper to try to understand this injury and this madness.
Tonight I choose to discard and ignore the words of that woman.
She is one person. One doctor that needed to fluff up her feathers in the office with me and make me small.
There is kindness out there, we just have to keep picking ourselves up and seeking it out.
I haven't posted here in several days because it's almost been too hard to leave my bed. I went from bed to bed, back to bed and again in bed. It's horrific. I am not a bed person. I rarely spent time in my bed. I think the gabapentin brings me way down but it also suppresses the restlessness aka akathisia so it's the better of the toxic two. I think... But this heaviness and breathlessness and chest pain is equally hard and scary.
Reading Jennifer Leigh's Benzowithdrawalhelp blog is very helpful because she is reassuring with her recent post about constant thoughts of DEATH and POTS and all the symptoms of withdrawal that she mentions. The one symptom she did NOT have however was Akathisia.
For that she is lucky. She has survived something brutal however. Her work is really a gift.
I looked at my genetics and see I have a homozygous COMT gene which someone told me "will make you feel like you are on meth because the dopamine isn't circulating in your system properly". I have no idea if this is true but I plan on getting help with my genetics through someone who can interpret them. Something is up and I know it's my genetics or my health condition, I know this isn't remotely me. I am losing my fight and it's scary to feel so weak in mind and body. Each day I stand in the mirror and hold my hands up in a power pose and on my hips and say " I AM HEALING, I AM GETTING WELL". This only lasts several minutes, while obsessions fill most of the rest of my day. I wish I could enjoy this 'time off' eating bon bons and watching movies, but sadly, it just doesn't work like that.
Today I forced myself out the door to meet my family. I need to take my own car because I often can't stay in one place for very long. It's agony. We had pizza. I got gas. And that was A LOT to do today. It's sad, but true. Many of my friends cannot even leave their homes. And sans meds I would be there too. But the pain was just too too excruciating, I had to do something or I would have been close to death.
Wednesday is my neuro appt. Not hopeful but will show up. Trying to get my doctors to coordinate care is like trying to solving peace in the fucking middle east. Let's just say it ain't gonna happen by Wednesday even though I have tried and tried.
I have worries on my mind. Money-or lack of it. My children. Who will care for them? Who will take them and drive them to school when my husband is working? Our child care person just took on another morning job which makes her less flexible. I can't handle life at the moment. I can barely think. I want to DO things that can help my family but at the same time I cannot do much of anything. It's very hard to explain. I need to focus on myself full time and that will mean leaving the family, now I am certain of it. It is tragic and sad but my children are WAY too sensitive to see me decompensate. I don't want to do this to them. Being away on a 'job' is easier than falling apart in front of their eyes. I won't do it to them. Somehow I need to leave my home when the time comes for care. I asked Baylissa what she would have done if she had had children and she said there was no way she could have cared for them, she was just way too sick. This is the truth folks. The truth that keeps people on these poisons for decades. I had no idea. Not a single clue. I wish I had known before I injured myself or tried to taper in a month. I wish I had had informed consent. I wish someone had mentioned TAPER to me, or warned me in any way, shape or form. This is not my fault and yet I am paying the price and so are my children.
I feel sedated, wired, sick, severely depressed, restless, obsessive beyond words and still left wondering--is this med withdrawal? is it? My brain is frying. Nerves everywhere. Buzzing. Toxic sleep where again I was paralyzed in a dream and was reaching up and up to the heavens. I hope this means I am not transitioning. It is scary.
Jennifer Leigh's post was helpful but what is ones answer is not everyones. We are all different. My doctor wants to proceed with the taper to figure out what is on the other side of this. HELL. That's what. Then.... lets pray...heaven.
Once off there is NO WAY NO WAY any reinstatement can EVER happen again. I have seen that fail WAY too many times as it did for me. So once off, I must live with those consequences no matter what. I am making the decision to get off this poison, and my doctor supports it because I was not well ON it. I made the serious mistake of cold turkeying (with no warning, no information on how these drugs operate in the CNS), and the second mistake I made was a reinstatement after the DAMAGE had occurred and I was FRYING. When I say frying I literally mean I felt I was lit on fire. I have no idea if others have experienced similar but I don't hear it much even on BB. I have several friends who describe similar experiences. But mostly it's the lymie folks who describe this or others with other hideous issues. Let's pray it's "just withdrawal".
I am trying to keep calm and carry on.
Each day to be honest feels like groundhog's day. I feel heavy inside from the gabapentin and I don't think I am processing any of these medications properly. If I am allowed one wish it is to heal from this CNS damage.
Sorry I have nothing inspirational to write at the moment. I am just passing the TIME. I want my life and health back so badly it hurts. I know everyone wants this too. One day at a time.
I hope everyone is feeling the LOVE today. Whatever that means to you.
Snuggling with your cat, cuddling with your dog, or even better your man/woman/teddy bear whatever it may be.
My day started with a walk. Breathless. I kept going. It really helps to walk with my soulful neighbor. I am not sure I would have pushed myself as far, had I not walked with my sweet, forgiving, and non judgmental neighbor.
Everyone needs a circle of sacred 3 people that you can call upon, people that know you inside and out, don't judge, tell you the truth, nudge you in the right direction. She is that person to me and I am grateful. She doesn't get this benzo madness but she is caring, honest, and has good common sense. She directs me to distract my thoughts, focus elsewhere and get out of the house when I can, even to join her running errands. It helps. Every little distraction helps.
I had another acquaintance come over and show me DoTerra essential oils! They are AMAZING. I think I have found my new career! I am so into these oils and they are very soothing and in fact a great way to distract. Just open up a bottle, take a looooong whif and focus your attention there. It is like a breathing meditation of sorts.
My old meditation mentor told me of other meditations you can do without sitting or closing your eyes. You can do a sound meditation where you put your focus on the sounds inside or outside of the house---the airplane, the clock ticking, the birds singing, the crickett chirping and so on. I will try this again.
From my earlier posts you will see I was meditating hardcore mid taper. I was getting into what they call an 'alpha' state and feeling like I was retranining my brain for relaxation. Benzos had other ideas. When things hit the fan in November I stopped abruptly because any stillness was not even possible in severe akathisia. It actually hurt to stay still. God, it's the most god awful symptom known to man/woman.
When I get my essential oils I will tell you exactly what they are but some that I remember are called: Wild Orange, Frankenscence, Peppermint and others. The best place to put them Iwas instructed was either in a diffuser, on your pillow or a couple of drops on your feet.
Apparently these are the real deal oils, not like the ones you buy in the store. Who knows.
They are lovely and I felt a sense that everything was going to be ok here in benzo land.
It was a brief moment of hope.
The night ended badly last night but today actually has gotten better as the day has progressed.. It is completely an unpredictable shit show (excuse my language).
I saw my doctor today who is very kind and open (this is another one) and not dismissive in the least. He has worked with complicated benzo cases and has 'seen this before'. Let's hope.
He assures me I can heal on gabapentin (not so sure..)and when I mentioned a GABA eating parasite he laughed out loud! It's good to have a laugh (umm even though I read it in a medical journal). He assures me I won't have an akathisia nightmare when getting off. Which is very different from the doctor that accurately said "You will be fucked at the end of your taper, you sensitized your nerves". That man, however crude, put it right. I know what's ahead. I mean not exactly but like I said I got a preview before the gabapentin was on board. I will keep going slowly but I am not going to do this forever. The time has to come fairly soon to start moving on in my life. God willing. No more surprises, only good ones puuleeez already.
I am instructed to keep trucking downward. He doesn't feel I should stay on for life. He says I have been miserable on this med and will heal only when off. It has to happen. We are investigating other issues like the migraine/seizure aura thing, bacterial and viral things to rule anything else out, then it will all be chalked up to BAD BAD withdrawal, CNS injury after cipro steroids , hypersensitivities etc. He also said that only when I am off can we determine what is causing what. We shall see. Putting my trust in this man and it's DAMN hard.
According to DNRS (Annie Hopper's program), I will need to keep talking, thinking, behaving like these issues don't exist ( I was doing this before I crashed at 1mg V) to try to retrain my limbic system to shut off the overdrive it is in. We shall see. I have to do my part. It's easy when I am less symptomatic like now. When I am symptomatic I tank. There seems to be no rhyme or reason to these symptoms --which is why this unpredictability of a protracted nervous system issue makes it impossible for people to understand or to go to work or plan much of anything. Most nights I am still up very late, but since I have no where to be in the morning I really don't sweat it. I had a call from my other doc this morning who asked me "Can you take a nap in the afternoon?" When a doctor asks me that I have to laugh and say, YOU DON'T GET IT DUDE. There are NO naps in benzo withdrawal. There is very little lying down. At least for me.
I have read through some of my posts and I feel they come off angry. I mean, yeah, I think it's normal to be angry, resentful, in disbelief etc etc and it's really really hard to smile through akathisia and debilitating pain. I know there are people who can do it because there was one such man on BB (Indigo's success story) that was astounding.
When you read Indigo's story and his positivity it's really like reading GRACE. I mean doctors FUCKED THIS GUY up (well he cold turkeyed 5 meds to start with which wasn't so smart obviously). Then the advice he got went from bad to worse. This man was ruined to bits with severe akathisia for YEARS. I mean YEARS. Many hospital stays and no previous mental illness. He made it through after 4 years, finally off everything, with still some CNS damage but I was just BLOWN away by the kindness, and positivity of his posts. He was easily one of the sickest people on that site. It was true grace.
The reason I mention my anger or resentment is because it doesn't serve me in helping me get the message to others--particularly those prescribing, about the dangers of benzos. These dangers are very real. Maybe they are somewhat uncommon but I don't think so. I think people who have been harmed by different medications start to fear health professionals and just stay home doing this nightmare DIY style.
But the purpose of writing, talking, sharing is ultimately to get the word out to friends, colleagues, doctors, therapists, neighbors, everyone and anyone.
Doing it with an angry tone puts people off I imagine. Yet, it is hard to remain sane and tender and rational when in the thick of it I understand. Sadly I am not the picture of grace but I am working on it.
Today I spent some one on one time just talking and sharing photos with my children. It was nice to be able to sit with them, rub their bellies and their feet. They just want their Momma well.
We celebrated V day with lots of chocolate ( I didn't partake) and hershey's kisses and cards and drawings.
My friend and I were looking for a distraction to this madness. I am not that into coloring books (although she thought about making a benzo one that was pretty funny), I don't know how to garden ( I guess I could learn but I am from New York City people), but I like to draw and paint and write. Play as much as you can when you have the good moments.
Tonight I listened to Beyonce and broke into some crazy moves.
It was 3 minutes and I did it. Keep fighting.
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.