A brief window today. Again, I am still on meds so I don't know if this terminology applies but... I went on a walk. I cleaned, as usual. Stayed home mainly.
I texted with a benzo friend who put it 1000 percent right. This is prison life. Survival. Get up, take your meds, taper, go outside if you can, and stay out of trouble. Prison life. Except the prison is our bodies and minds. Every thought, every interaction, every appointment, every breath needs to be thought out. Is this good for my recovery? That is the question we need to ask ourselves with each thing we do. And sometimes we don't know until we try and fail. Now I think I know my limits. Basically stay indoors. Rest. Don't worry about what time you get up, if you aren't sleeping at all then that's not an issue. Taper safely. Protect yourself and your noggin. It may be that others could 'get away' with doing things faster. I am frying inside and I know without a doubt I am in for the fight of my life. I can feel the pure damage inside my CNS every moment of every day. The burning, terror, akathisia all of it. I pray that this level of nerve damage can one day heal? I really don't know. And today, a window, believe me it's not like my symptoms are gone. I can go on a walk though and for that I am grateful. I did some stretching on my floor and cleaned my counters. I will try to do a resting meditation. I will try to accept my symptoms as they arise and show up. Don't let them scare you or they win. Remember that now isn't the time for big decisions, arguments, signing contracts, nothing. It's hard enough for me to pay my bills and I can barely do that. This is a time to protect your cns and your brain like your life depends on it. Because it does.
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http://www.huffingtonpost.com/allen-frances/yes-benzos-are-bad-for-yo_b_10775014.html
A doctor finally acknowledges what others do not. Yep. They sure are. The ebbs and flows of this process are quite unpredictable. I really shouldn't even be writing this late as yesterdays posting and computer time kept me up past 2am buzzing with head pressure and that lit up bulb feeling. It was awful.
I did manage to fall asleep thankfully at some point, who knows. Now that I am not working, and I generally don't have to get my kids ready in the morning I don't fret so much about being unable to sleep until 2, 3, sometimes 5am. This doesn't happen always and I really do need to take responsibility for my part in this. Each day I say " Ok, no more electronics past 9 pm" and each day this commitment is broken. Why? Because for some odd reason I seem to feel a little better late in the night. Very up and not 'normal', I would say it's 'painfully up" but still.. it's less suffering. I woke up with a lot of struggle. A lot of sx, I won't mention here. There was a definite ebb and flow. Sadness, physical pain, terror, severe burning in my chest and throat (that is what accompanies the terror). I went to a friend's house to get away from the busy-ness of my small home. I sat in her guesthouse with her instruction. She said, "don't think, just watch some TV". I tried, I swear I did. I flipped through channels--Housewives of Atlanta, CNN, House Hunters, and clicked rapidly through the channels not able to rest long enough on one. I can't watch TV now. I couldn't settle and I couldn't focus. I couldn't relate to anything or anyone on TV. People in stylish clothes, complaining about stupid petty things, politics, discussing the flooring or kitchen cabinets. None of it made sense to me and none of it matters. My chest was in agony and all I could do was lay down with my hands on my stomach and do deep belly breaths. After five minutes of this, I left the room shaking and my teeth were chattering. I decided it was time to come home. Here, suddenly there was a shift. The chest raw throat thing subsided (it basically feels like my insides are RAW and sunburned) for a moment and I felt better. These ebbs and flows seem to have no rhyme or reason. When the pain comes on (and recently it was 24/7 with no let up) I will do my best to breathe very very deeply. In those moments of terror I cannot stand up, I cannot make a sandwich, I cannot do anything. Then it goes...And back again. Remember, I am still ON a benzo. I am not off yet. That's the real worry for me. A psychiatrist I called gave me a call late tonight. I asked him if he knew about akathisia and if he believed in benzo withdrawal and protracted benzo withdrawal. He essentially said NO. He said "I believe your symptoms but we may have differing views about the origins of your symptoms". And he was 600 dollars for 90 minutes. Moving on..... He also said "all psychiatrists cause akathisia and we see it on a weekly basis in our practice" Ugh. Then why don't you look at what the fuck you are prescribing to people!! On a positive note, a colleague is involved in essential oils and will be coming to my house to show me some options that can help with de-stressing that are simple, safe and pleasant. I know it's not a cure-all but maybe it can provide relief or at least some good vibes. We can all use some! I talked to this guy who generously gave me his time on the phone. He didn't believe people in benzo withdrawal reacted to chinese herbs and felt it was their anxiety causing the reactions. I disagree but I kept my mouth shut about this. For some they may not have hypersensitization especially if there is no kindling or cold turkey/fast taper/reinstatement in the picture.
I can't seem to find someone locally who deals with iatrogenic injury and I liked that he writes about this and other things in a very detailed way. Anyone who lives in his area, I would check him out in a heartbeat. Now, it was an acupuncturist who PRESCRIBED me this drug to begin with (he was also a medical doctor) so I am not keen at all at going to acupuncture at the moment. In fact, I read somewhere that you need to be careful with the points used due to detox type of issues. Basically, someone really needs to know what they are doing and be very skilled at the level of sensitivity here. I just thought I would share this with others, see what you think. http://www.acupunctureintegrated.com/articles/withdrawal-from-benzodiazepines-and-ssris I have continued to try to" act as if "in my limited way.
Today I went on a walk. I talked to Baylissa and other fellow benzo friends new and old. By the end of the night I was in full blown prickle. All over. No let up. I started having these olfactory hallucinations again--at least I am smelling nice smells of incense. Some say it means spirit is with me, others say this is a seizure aura. I will go with the former. It's always the puzzle to determine what caused this uptick in symptoms? Did I use too much energy talking on the phone? I know that sounds ABSURD for anyone NOT in benzo withdrawal but truly, over talking (which I am known to do a fair share of..sorry it's my New York Jewish roots) causes me to have more symptoms. My CNS simply can't handle TALKING. Even pleasant talk. Emotional talk, Happy talk (what's that?). It's too much. Life is too much. I need that dark warm cave people, with a 24 hour nursing staff. I boiled it down to several things: drinking a lot of lemon water (did this flush my kidney or liver too fast? oh god I have no idea) Too much talking walking earlier this morning which may have pushed my body too hard as I was trying to act as if with my neighbor (though it felt I was walking through molasses) expending too much energy today (jesus, I barely did anything) See I feel like I am in a bind. I want to be out of the house because I know soon I won't be able to be..possibly for very long. I want to talk because after all isn't that therapeutic? Maybe not so much. I talked to a new benzo friend who is many steps ahead of me and I hesitated before I told my long circuitous story. We all have one of those that led us here, don't we? I didn't want to ramp up my symptoms and it goes against the work of Annie Hopper's DNRS and Ashok Gupta's program that maintain that telling the illness story ramps up the stress response and activates the fight or flight process. It's beyond that in drug withdrawal but there is undeniable limbic kindling and PTSD here. Majorly. I believe I am suffering from a CNS hypersensitivity issue. I can't take a vitamin, supplement, I can't even dance in my living room. I am FRIED. I go back and forth on the idea that I am going to heal vs being in a disabled hell for years. No way to predict. The common piece we all need is HOPE even when everything in our lives has been turned upside down and inside out and this is the last place you ever thought you would be. For so many of us, this dependence took us by surprise. Many of us, were the good patients; trusting, believing what the men in white coats said as truth. Many of us also are those that never did drugs. I personally have experimented but after my chronic pain, my nervous system couldn't handle anything remotely toxic, not even half a glass of wine. Have you heard these things in the midst of your withdrawal? "You have BPD", "You are Bipolar" "You are dysregulated", "You have PTSD", "You are always going to be anxious, depressed..fill in the blank". "It's your old anxiety coming back" "You were born with defective receptors" "Does a diabetic stop their insulin?" In full blown akathisia this benzo person I talked to said he was labeled "socially phobic". Ridiculous. He had just talked in front of over 300 people and after being detoxed he was labeled anxious and socially phobic. No, he had akathisa. Ugh. It's so enraging to me. The ignorance. Why not look the damn thing up and understand that it is a common side effect of withdrawal? Why not take your patients word on things than thinking they are making shit up for whatever the reason. We as humans aren't stagnant, we aren't fixed in our states. We are moving, flowing, spontaneous and can achieve anything we dream of. We aren't this label or that label. If we are seen or judged in this way, sure, we may act the part. If we are in full blown withdrawal and misunderstood, sure we may act irrationally or impulsively. It's horrible how people doing the 'healing' are actually inflicting more damage, therapists included. I really swear I am not anti doctors, I am anti-arrogance and anti-know it alls. My son asked me if I had any good dreams lately. I shook my head honestly. He said "Why because of that medicine?". I said yes, it doesn't make me have good dreams right now. He curiously asked me "But I want to know what you actually feel like, because I don't know what you are feeling". My six year old is more skilled at listening that many. He is a curious soul and I love him so much. I dream of recovering my health. I dream of peace in my body. I dream of yawning after a long day or a long hike. I dream of doing yoga and feeling my body strong and fit. I dream of going dancing. I dream of going to the beach and walking along the sand. I dream of traveling to distant exotic places. I dream of relief. Full body, mind and soul. I dream of letting go of fear of death, the unknown, uncertainty. I dream of letting go of all resentments, and moving through this process with as much grace (or insanity, whatever it takes). I dream of full surrender. I dream of being pain free. Fully pain free. Something I have not felt for YEARS. I talked to a fellow sufferer who paced for over 16 mos. He lost everything. He nearly took his own life. He doesn't have a clue how he survived it. He isn't done with the suffering yet but he is better. He still cannot go out much or do things as he did but he is grateful, so grateful for the ability to SIT. He said, which is what I say, that if you don't know akathisia, you don't know that this is a hell and torture beyond most. The pacing stopped. He never questioned what it was that was causing it, he knew. It was the drugs. One foot in front of another. We are all in this together, teaching and mentoring those that are behind us and rejoicing with those who have passed through this. But it's time we are heard. Compensated. Understood. It's time. |
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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