That was a scary last couple of days. Today a doctor I went to see had a perfect alternative solution to the albuterol nebulizer that was bringing me to despair and agitation. Praying that with proper rest I will heal and not need further treatment.
I did something stupid which was read up on akathesia. Apparently there is a blog dedicated to it. I read on Bliss John's fb page a story of someone that healed after 44 months. 44!! god bless him or her. I was too scared to read, I couldn't imagine pacing and pacing for years and years with lack of sleep. Wow, There are some true warriors out there. And noone and I mean noone can understand unless they have felt the hell of akathesia.
I feel the storm beneath me. I feel it rumbling underneath the medication. I hear it's whispers.... I hear it and I want to turn away. Maybe if I turn away the whispers won't become screams, they won't catch me or find me as I journey downward. What scared me was this man's post that he reinstated after 9 weeks and the problems became worse. I reinstated twice and kindled several times. But what can I do? I pray that the gods, spirits, my brain, my chemistry protects me from enduring this kind of hell that only a true fucking warrior can endure. I had several weeks of it and now it's present in a milder form but I could not even imagine living it at it's peak for several years. I would most certainly be committed. But we never know until we are there, right?
The nurse at the doctor's office is a tough broad. She told me back in the 60's her mother was taking shit loads of qualudes then was transferred to valium. One day, she decided to just stop and went mad. Screaming, freaking out-she landed in the mental hospital and they tied her to the bed for a month while she was wailing and freaking the fuck out. This nurse told me that story laughing. So many of us have endured this path before. This woman lived to be 83. I am trying to prepare, plan for the worst. Then if I escape the worst and if the whispers don't begin to scream I can breathe relief. But I know with benzo withdrawal it can find a way to hit you 3-4 months down the line, especially with added stress. I should mention that aside from benzos this is probably one of the top 5 most stressful times in my life deciding which way to go in my marriage. Space is what I am craving. Space. My own bed. My own room, My own quiet to be disturbed in. It's easier to be disturbed without anyone watching. Who will cook for me? Who will take care of things? Who will do these things I find so hard to do now? I have the deepest empathy for those that endured akathesia for that length of time. Unfortunately when I was reading about it I learned it has something to do with the dopamine receptors. I think aside from benzos those domapine receptors are a source of problem for me. The endless walking that I do, the endless talking at times I think is a way to regulate that imbalance. But I was 'normal' before. I could get sleepy, and pass out, I loved exercise but I also could come down and chill. I loved movies, books, talking with friends, shopping, going out, singing, playing with my kids, hiking, yoga, spirituality, learning, growing... I loved and love so many things. In akathesia things come to an abrupt halt. I now look at the many schizophrenics walking and walking and talking to themselves and I understand more. It hurts, it really hurts when I read stories such as that one. I wish I could unread it and unsee it. But I needed to read it. I have felt it. It hit me out of the blue when I fast tapered and cold turkeyed. It body slammed me to the fucking wall. I couldn't sit, stand, eat, I was on fire and wanted to scream scream scream Especially when someone said "this isn't a big deal, this is in your head". I don't think so. But we can't ignore the fact that our thoughts impact our symptoms And vice versa. When I was feeling good several weeks back, I forgot to blog. I felt too good to blog. I was out playing tennis. Now... I am back. Scared. Despairing. Coming up for air today, thank god. My plan is this one if akathesia comes knocking on my door:
Quit work. (probably before this for sure)
Go to try NAD IV treatments which are supposed to lower glutamate levels (and a steep 20 grand I don't have)
Consider CBD oil at higher doses ( I am not using it currently)
Go to a treatment facility or some healing facility.
Break out the goddamn credit cards
Know that my symptoms will come to an end.
Stay out of the doctor's office unless as another benzo buddy said my eyeball sockets are coming out.
Slow the taper WAY WAY down to try and prevent getting slammed.
I am asking for all the help and abundance the universe can provide me and pray I meet the right people at the right time that will be there when I need to pull favors.
When I put my kids to bed tonight I was stroking my older kid's hair. I said, " I am so sorry that Mommy isn't able to be as playful or go fun places with you right now.. I am trying to get off a medicine that isn't making mommy feel well, but I love you so much and want you to know that I love being with you and can't wait to get well so I can be there for you again". I asked both of them if they felt anything or were mad about anything. My younger son turned his head and said " I am mad, mommy". My older one laughed and said, "I am not mad at you". Then he knowingly looked at me and said, "you know what, you can try to trick your brain and pretend that you are feeling well and soon your body will remember how to feel well"
Words of wisdom from both.
I am grateful tonight.
Grateful that despite my problems in my marriage, my husband is a solid man. He is a renaissance man capable of great things. And tonight he made me a delicious bowl of homemade soup. I am grateful for my little angels. They speak to my soul and make my spirit soar when I see their angelic faces, their laughter... even in the midst of Dp/Dr, in the midst of this haze, love is stronger. Love is stronger than all of it.
The need for accidental addict groups is so necessary. Mostly on days like today when only my 'benzo friends' can understand, But it's funny because many of us are hesitant to talk on the phone with one another for fear of triggering or activating more symptoms. Best thing is to ignore them but when they are knocking loudly at the door it is really hard. Some of my benzo friends have turned a corner in a positive way. One man was having an inordinately hard time and suddenly when he hit 1mg something lifted and he is able to sleep through the night! Wow. I feel like a broken record in my life. Everyone keeps looking at me funny saying--wow this has been going on for so long. Yes, believe me, I know, I am living it. It's endless. Endless. Endless. Can I make that any more clear? It really is. Horrifyingly endless. I don't know if and how I will come out of this. I feel so angry and tired. I was on a good positive run there for like a minute... bear with me, I will climb back there soon. Continue taper or hold while sick? That's the question. I feel worried.
For those at home in need of distraction and some humor, watch the documentary on Nora Ephron. Although she was infamous for writing everything and anything about her life, it was the most significant health crisis that she had at the end of her life that she managed to keep secret from everyone close to her.
Sometimes I feel like I am dying, I had a dream last night that I was in a twenty year old body, prancing around the streets of the city I live in, in a little teensy weensy bikini. Only, it turned out I was terminally ill and didn't tell anyone. Before I went to sleep, I asked my spirit and my soul for some guidance through a dream. That's what you gave me?
Shit, I woke up even more depressed.
I am not having a terribly good day. You could say I have fallen into despair. I think that accurately describes it.
My nerves are burning. Lots of new symptoms and no outlet because I can no longer exercise due to being quite sick. I tried watching some Sarah Silverman but I didn't even feel like laughing. I meditated for 45 minutes and felt some surges of electricity but nothing feels right.
Trying to keep my head above water.
My husband has taken the kids to get their haircut, now to a late night show, yesterday on a hike to a waterfall and lunch with friends, the week before to a pool party with other friends. I. Have. Been. Home. Home. Home.
In bed. Or near the bed. Sitting down. Laying down. Sitting up. Moving lazily from one soft cushion to another.
I feel defeated. Despondent. Life is happening but I am not a part of it. Even when I have been doing little things here and there I have been so absent. My kids grabbed me for a big hug today. The guilt I feel is enormous.
And yet, I can't be around them for long because I am so ansy. I need to keep moving, walking, doing and now....the universe has flattened my capacity to do so. I have taken off another week of work. My third week of work off. And my husband's third month off work. Feeling nervous. Feeling resigned. Feeling like I want my life back. I look at photos of me healthy and happy (let's say happier) and I want those moments back. I want 4 years ago back. But we can't go back. And I know that that kind of thinking leads to only more despair and more suffering. I have ten more days off and if I have to look at my garden and my couch all day I think I will lose it. I know I need rest. It's the only way out. Out where? When am I coming out? Am I just starting to head into a dark tunnel? After all, it's the end of my taper not the beginning. Many questions and today I don't feel hopeful I feel I need to survive this for my children. I feel scared and hopeless. Not even the doctor can reassure me, because quite frankly he doesn't know and I don't know what my CNS will do at the end. I feel it frayed. I feel it frying. I feel myself sinking. This is a marathon like no other. I don't wish this on my worst enemy. I want to know what the fuck I can do moving forward to stop this from ever happening to anyone again.
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.