It is very fitting that I just checked Jennifer Leigh's blog and she wrote a post on fatigue. This week has been scary with my fatigue issues. That's why I began researching Dan Neuffer and Jennifer Brea's work. It's hard to know what is happening inside our bodies and how to explain it. Jennifer talked about the fatigue in benzo withdrawal and her description fit my feelings to a T. I said to my husband the other day that I felt like my cells were not getting enough oxygen. They literally feel starved for oxygen. I tried walking but turned around quickly because it left me breathless and scared. It feels worse than when I was 9 months pregnant. My arms feel heavy and I can barely lift them, it feels like my limbs are made of stone.
That hasn't been a general complaint of mine as I am a HIGH energy person and the akathisia I experienced was the opposite of fatigue, but a whirling ball of energy in my core that was agonizing. The flip side of the coin is the bone crushing fatigue that Jennifer just referred to in her blog. It was helpful to read that, of course, I am not the only one, and I pray... that it's nothing more serious. The fatigue was SO bad my eyes and head were almost nodding off the other day, and yet there is no rest. It is torture epitomized.
I have a friend who is determined and walks everyday in benzo withdrawal. Rain or shine. Snow or sleet. She's walking. She's tough.
I used to be like that too. USED TO. But now I feel that when I push myself, I actually am doing damage. I feel sick for days.
The other day I challenged myself to put mind over matter and do an exercise routine with my neighbor. I felt literally breathless and depleted this last week. It was a mistake I won't be doing again. Not for a long time.
It was 30 minutes of 'cardio'. No biggie right? I almost collapsed while doing it and felt 80 or 90 years old. For a fitness freak like me this is horrifying.
I am on another medication which could be causing that level of fatigue -it's just hard to know.
I have been researching various things--hyperbaric oxygen chamber as they use it for traumatic brain injuries, and this is one after all isn't it?
I have been using a supplement Geraldine Burns was kind enough to share with me called Kyani. I am not sure what's working and what isn't but it isn't hurting and a woman named Pam Armstrong who worked for CITA felt it really helped people in withdrawal, particularly to avoid protracted withdrawal.
Today was a busy day. Maybe that's a good thing, maybe not. I don't know anymore what is good or bad.
To my children I appeared like a normal mother. I forced myself to make them lunch today. And dinner. They loved it. Pasta and butter and ham with some corn. Keeping it simple. I was happy to take them across the street to their friend's house. I am trying not to discuss this with my friend's any longer but my friend could see the weariness on my face. I am fighting hard today.
I have decided that each day (before I head off and hit acute) I am committing to doing one small thing. Today it was grocery shopping and it took all my effort to do that. I watch others as they breeze through the grocery store, stop and chat, in their workout clothes, sweaty, and strong.... so easy, so simple. The little things we take for granted. To walk and talk and do things with ease and with pleasure. This is a hidden pain that others are going through all over the country and the world. Unacknowledged.
I am trying my best to keep going before the fall....I have only cut .12 this month and am gearing up for the next .3. I am heading into it and feel determined but the akathisia will knock me off my feet and I am not eager to greet it. I want to punch and push this reality away from me.. I wish it were so simple.
Jennifer also mentioned gut issues (my primary issue) and bladder issues and all the rest...
It's a boat load of fun. I am very ready for this to be done. I can deal with those as I had them pre benzo. That seems like child's play compared to this. Honestly. A little bloat and bladder pain? whew. Nothing compared the the big hitters like terror and akathisia and bone crushing fatigue and all the nerves awake in your body. I can handle it, bring it on.
I was reading Jack Hobbs (?) book called the Benzo Book. Rather I was skimming it because I can't read a thing right now. One thing that made me laugh was that during his withdrawal which lasted over 3 years (although he seemed to do better as he was on the lower doses but he wasn't kindled at all) is his wife each day would ask how he was doing and feeling. Each day he responded with a different level of misery. His wife stopped asking and had to go do her own life to protect herself. I understand. That's why the community of friends and others going through this is so very helpful. He made it! So can we.
What he said was that it wasn't that he was being 'negative' as he had always been an optimistic, positive and fully functioning person. It was the very nature of this brain injury that literally prevented him from responding in a positive way whenever asked. He spent all those years in his home as a way to protect his nervous system. Something I wish I had done. The little stressors that I dealt with this year felt gigantic and actually caused literal shock and pain in my central nervous system. I don't understand how people who have reinstated actually make it off ok when I feel zero healing this year, only more damage. I must just GET OFF. We are all so different. Reinstatement didn't work for me. It was an absolute mistake that I regret.
Monday I meet with my disability review. Tuesday more doctors, more appointments to evaluate my immune system, my nervous system, my brain and more. I want to get on with the business of living not surviving and picking apart each body part with more questions and no more answers.
One day, I hope I can return to the level of health I had before, even though it was hardly ideal, it was more manageable than this. If I could wave a magic wand I would remove: my akathisia, terror, burning and nerve pain. Everything else is a manageable hell. Those four issues are unmanageable and I am powerless over them.
My new age self has kicked in and I have had my house cleared of negative energy earlier this week. We shall see. I need to keep the hope up and keep as positive as I can. One foot in front of the other.....
I had a good day with my children. They appreciated my lunch, dinner and taking them across the street. I got hugs from my babies today.
Slept until 10am (drug sleep but still)
I have a house full of healthy food
I took a shower.
Another day to be grateful for.
I am going to keep on trucking downward....
Last Monday my beloved pup and companion was fighting for his life. Today.... well, he's barking and begging for scraps at the table! A remarkable recovery.
We had a cardiologist and 4 other vets in amazement at his recovery, his will to survive and thrive. When I took him home Wednesday night ( I was told the cost of oxygen and treatment for one night would exceed 1800 dollars... I said I am coming to get him like NOW) he was sedated and not himself. I didn't know if he would ever recover the spunk he had or if this experience would leave him shaken. Wait a minute. I am projecting. He's a DOG and he lives in the now. In the moment. Each moment is a new one. It took a good 2-3 days for his spunk to return. I still haven't seen him wag his tail but he is a brooding kind of dog even on a good day. Regardless, this is a life lesson. The body (dog and human alike) is remarkably resilient.
The will to live and the spirit is also something that doctors and medicine cannot explain.
Last Monday were recommended to put our dog down. Today, Monday, he is resting, clip clopping around, jumping on and off the sofa, sitting for treats. I am grateful. My husband said even if he is just with us for another week, another month or two. He is HOME. He is with his family where he belongs not in a cold icy sterile hospital.
This is my dog. I think he has felt my sorrow, my grief. I know that sounds self absorbed and I know he's an old dog, but I just feel he and I are connected :) Call me crazy!
I have had several reasonable days. I have restarted my taper with trepidation.
I am going slowly down .15 per month until off. Should be another 4-5 months. Is this right or wrong? I just don't know. Will I make it? Won't I? I just don't know.
On Friday, after hearing my symptoms, my doctor is sending me to the local hospital to their epilepsy lab. I am smelling weird smells, get this intense head pressure and white light issues. If I haven't had seizure like episodes before, what would be causing them now?
When he saw my lab work he was concerned about some viruses that appeared high and possibly reactivated. At least he is taking my situation seriously and is not dismissive.
If I could only figure out a way to fix my stomach. I still don't know how. I have several numbers of holistic doctors but I am hesitant to go, to get more tests done, to be told I have yet more things wrong with me that need more supplements etc etc. It's an endless loop. I have to start somewhere. I am considering a supplement that people praise called Restore4Life then I heard it contained glutamine in it. This is an endless looping nightmare.
Today I walked. I walked with my neighbor. Her kids came over for lunch. I was almost a normal mother for the afternoon and it felt good even though the symptoms are brewing underneath it all. My akathisia is controlled. Thank god. With medication, yes, sadly.. but controlled.
I talked with Baylissa. She said yes, with other symptoms such as tinnitus or dizziness etc you might have to ride it out... but with akathisia, that's a different story. It is the most serious symptom out there that there is in my opinion. Not to minimize others symptoms, it's just a very distressing one that is linked to self harm and violence and extreme desperation.
I read Allison Gallagher's story. It's inspiring. She was quite a rock star!!! It's sad to read that at the end of her life while trying to help others she was 'caught' by a local psychiatrist and sued for the generous work that she did. I mean really???
I got a 35 dollar trim and colored my own hair yesterday
I went on a walk with a friend today
I ate breakfast and lunch--healthy as usual
I am not having akathisia today
My dog is alive and well
My children are healthy and well thank god
One more day.....
I continue to try to heal my brain with positive thinking and fresh air and good nutritious food. I am not taking any supplements and I hope my body is getting what it needs naturally through my green juice and garlic and orange juice combination.
I am well enough to sleep (with the adjunct medication I am still on--that comes later) even though I don't fall asleep sometimes until 3-4am, it varies from day to day.
I am reading Dan Nueffer's work on the autonomic nervous system as well and how he healed CFS. He wrote me back and said his program isn't specifically geared towards drug withdrawal so not sure how effective it can be but it's worth continuing to read and research.
-Do check in on your loved one, your friend often. Yes, this road is very long, It's not their fault. Yes, tapers can be endless. If they have shared this with you, it means they need and want your support. Ask them how it's going. Ask them all about it.
-Do read up on this issue. Do read, watch you tube, research, help your partner/friend/loved one feel SEEN. Yes, others may have had an easier time,but this particular person isn't having an easy time. Don't shame them for that, encourage and recognize that what they are doing is brave beyond words.
-Do let it be ok if they decide they cannot go any further with their taper or decide not to keep going. Don't shame. Don't judge. Dont be anti-anything. Be open.
-Do offer to come over, bring some food, bring your warmth, sit and be with them. If they cannot go out of the house, it's ok. Be there and meet them exactly where they are at. In the darkness, in the light, wherever....
-Do offer some essential oils, research alternatives to healing, even if its a massage or reiki or other healing. These aren't cures of course, just ways in which your friend or partner can feel loved and seen and a little less in pain.
-Do set up home visits. Do treat your friend, partner, spouse to a session with Jennifer Leigh or Baylissa.
-Do start a go fund me if they need help. Or even a fund amongst friends.
-Do try to help out with kids, take your friend to doctor's appointments, etc.
-Do believe your friend, partner when they say that most doctors don't recognize this as an issue.
-Do meet this issue with curiousity.
-Do warn others of this. Spread the word. You don't have to reveal specifics of who this is happening to, but if you hear others talking about considering getting on this medication, ask them to consider thinking twice and do their research.
-Do fight the stigma of being on prescription drugs and withdrawal. It doesn't mean you are crazy or messed up or whatever.. it means you were taking drugs as prescribed and weren't warned of their dangers. Tell others. Speak out.
-Do offer your friend a hand. Offer them hope.
-Do help them distract. How? That all depends on the person and how disabled they are. Music, meditation, foot massage, movies, I don't know. I am too in the thick of it to come up with any ways to be honest. (I go on walks, I pick up my children, I sit and read spiritual books if I can, I talk with others. I talk with Baylissa)
I will write more Do's as they come to me. Tonight my burning is suddenly raging in my chest and esophagus to the point of severe discomfort. I think the emotion of the day is catching up to me. I am just thinking about my puppy tonight. I can't DO much of anything so I will shelf these Do's for now...... What are some things your friends or family have done that have been warm, and helpful to you on this journey?
Life goes on in benzo withdrawal. My beloved dog, my companion for over 15 years is fighting for his life tonight. I feel regret and blame myself a bit. Thursday he went to the groomer. All was well. My son commented in the car how cute he looked and how much he loved him. I said the same. He was a filthy mess before and I was happy that he was soft and cuddly and groomed. I love him either way of course. Life proceeded as usual.
Or so I thought.
This is how quick things and life can turn. In just an instant. When he was doing a little coughing thing the last day or two, my husband and I chalked it up to kennel cough but wondered if we should call the vet. Had I been on my game, I would have, I know I would have. I have good intuition and said "maybe it's his heart" but discounted that quickly as I am blamed at being negative and imagining worst case scenarios. I say better safe than sorry.
Last night, I was sitting by the kitchen table writing little good morning notes to my children (I have been doing this while in withdrawal because I have been unable to get up with them in the morning but still want to be a part of it). While sitting there, my little beloved dog started barking and barking. I got annoyed. He was trying to get my attention I now see. He was trying to tell me something. But he was so full of energy and life, I just thought he was begging for food and passed it off as an annoyance. I checked to see if his bowl was full. It was. I got on with my business. What a mistake.
This morning the coughing became gasps. My husband told me he had booked an appt at 2pm. It was noon. I said HELL NO. HE NEEDS TO GO NOW. This is the kind of thing my husband and I often disagree on. I overreact I suppose (although I feel I listen to my intuition) and my husband undereacts. We are working on balance.
I had woken up positive and had even had a good dream for once. Not a haunting hallucinatory nightmare as I have tended to have during this withdrawal.
I had had a good conversation with Baylissa Frederick. She was calming and soothing as usual. She's fantastic. I had woken up with what felt like somewhat of a window (not sure I can use that language while still ON the medication but let's just say I felt a tiny bit better).
But life had other plans....
I was afraid to deal with my dog because my nervous system started to shake. I was afraid I would be set on fire if I didn't calm myself down. I feel I have VERY LITTLE CONTROL over what my nervous system does. I feel injured. Guiding myself with words simply doesn't work. Once the CNS express train is off and running I have little control over what happens next. I tried. I had to detach. That was the only way. The only thing that was going to help me survive this.
So, I told my husband I needed him to carry him and I would meet him there. It wasn't good news. He was in heart failure. Just yesterday after he barked I gave him a snack and he readily gobbled it all up. That was my sign whether or not it was an emergency. I didn't think it was. I am trying to take contrary action from my former self that over-reacts... so I waited. Now I realize that was just my stupid benzo brain not listening to my good intuition. I feel had we taken him one day earlier when he was showing milder signs he would have a better chance of making it. We don't really know that but still...
I lit a candle tonight and prayed.
He is in oxygen tonight and infused with medicine with hopes that they can clear his lungs. Miracles happen right?
How does this relate to benzo withdrawal? Well it doesn't really, it is just a really sad part of life. But the theme that I was talking to Baylissa about is what to do when I am down and how not to let others minimize the w/d sx as being "just withdrawal". Finding a safe place to go where others are educated on just what is going on, and not a merely labeling it as a 'recurrance of my past illness' (because I didn't have one).
If you can, have others you trust lined up to help FIGHT FOR YOU if and when the time comes when you get off this medicine.
I am at .75 mg of V. Tiny huh? But I am propped up by other medications. Without them, right now I don't think I would be alive. I was having an extreme reaction with akathisia so unbearable and the worst chest pain that had me in a curled up little ball two months ago. I want to make sure my family knows not to take a wait and see approach when I am in the thick of it. Take me to the doctor, healer, magician, I don't care. Do some insisting. Hustling. Phoning professionals. Do whatever you need to do on your partner or loved one's behalf to be seen and heard and understood. If you hear someone saying this isn't just withdrawal, well, check out what they suspect and move on. Baylissa says, it's normal for withdrawal. It's normal.
Another thought I have is that noone knows your body better than you do. While you would like to be drug free RIGHT NOW (Oh so do I believe me), it is not wise to put your life at risk or at harm in the name of principles in my opinion. While many of my BB members pm me about seizure like experiences they felt, or akathisia they weathered, we are ALL DIFFERENT. Not all doctors are evil. One doctor warned me about the seizure auras I was having and I am inclined to believe him. I don't want to take any chances with two small kids. I want to do this in a slow calculated way (which I sadly was doing but it hasn't work quite the way I hoped).
There was one you tube I watched about a man discussing his seroquel and klonopin withdrawal. He DESPERATELY wanted to be free of these drugs but suffered heart attacks while trying to withdraw. I don't know the details, but let's not judge others, okay? We are all doing the best we can. We have to consider people's health, gut health, family support, financial situation, all of it.... only you know what your mind and body can tolerate and what is best for your survival. One step at a time.
I wish I could be writing a blog about something hopeful, cheerful, light, artistic, creative. Something that is life affirming. But here I am , resisting and trying to accept where my life is at the moment. My pup included. I thought it would be another day with him jumping on the couch for a cuddle, sitting at my feet waiting for scraps and peeing in the house (yes, when it rained he liked to pee in the house. A bit of a primadonna he didn't like to get wet!!)
I talked with a neighbor also about my situation in the event I need someone to lend a hand. I told her all the people in my life are urging me to keep going with my taper, keep marching along. But I shared that I feel I am in a concentration camp and I am marching towards the gas chamber. Sound dramatic? Then you haven't experienced the horrors of drug withdrawal. So why am I resisting marching towards the gas chamber? I'm scared. I don't want to die over this, I don't want to suffer for several years in a bed. I am not sure my body is strong enough to. I have to tell you again my horrific problems started from not even daily usage. I am HYPER crazy insanely sensitive. I have underyling health issues. The OFF is where we will see what happens. I just hurt. In every way. And yet I am fairly calm tonight despite burning all over, Despite the fact that the one pet I adore beyond words is fighting for his life tonight. I am too. We all are.
Today was about my amazing dog. My amazing companion. He used to jump out of my car window when I first got him. When I would go on dates, he would run away out of the house and me and my date would be chasing after him. He never listened. He barked a lot. I still loved him. He was crazy, eccentric, he is my cutie pie. He showed affection in his own, unique way, Every morning, he waited by my bedside. He was my companion, my friend. I got him when I was in a dark place 15 years ago, still in chronic pain. He was unruly. 6 months later, I met my husband whose calm presence calmed my baby. He became our dog, our baby. He was so loved. This last year I didn't SEE him, I barely connected with anyone in my house, let alone my dog. Anyone. I am muddled and self consumed and in pain. I want out so badly of this prison and into life again.
I am grateful that I was able to be well enough to be with him today. I have lit a candle in honor of him and imagined myself sending him love, and warmth in meditation. I don't want him to suffer. I want to accept life on life's terms, not my own.
Before I start with the Do's, I am going to start with the Don'ts.
-Don't keep telling your friend/family member to go to detox and get this over with already. It's too late for that. It also means you have not done your homework and read up on this madness. For some, detox does work but it's a risky way to get off of a benzo. I have met several people who went to detox for benzos and said "it wasn't that bad". God. How I wish I was one of the lucky ones. However for sensitive nervous systems it often does not and creates much more harm then good. Having said that, I reinstated after an accidental cold turkey and fast taper and I regret it. Reinstatements sometimes work, however in my case it seems it's made me 10000 times worse. If someone had calmed me down in cold turkey or fast taper or given me gabapentin, I might be healed today. Maybe not.
-Don't send your loved one emails or texts saying "Be positive", or send them articles on negativity or positivity. I know your intentions are good, but at least in my opinion it's harmful. It's like going to a therapist and they tell you to smile when you were really sad and going through a breakup or a personal loss. I know taking contrary action helps but first MEET THE PERSON WHERE THEY ARE AT. However dark (and it doesn't get darker then this) meet them there. Maybe you don't know this kind of darkness, have never felt it or touched it, then step away. Tell them it scares you. Tell them you can't handle it. Tell them the truth and let them tell you the TRUTH in that moment. The loss here extends so deep--it's not just financial, relational, emotional it is also a loss of physical health and wellbeing in every way shape or form. And a loss of everything they held dear to themselves for so long. I would give it all away to have my health and wellbeing tomorrow, and my children's health and wellbeing. It's cliche but true.
-It is SIMPLY IMPOSSIBLE to be positive on a day with full blown akathisia and terror.
Let's just say there is NO WAY I could have imagined the body capable of creating so much pain and terror. This isn't a ohhh, just take deep breaths and it will be ok terror.
Remember, for most with a sensitized CNS there is NO OFF SWITCH. It feels like a sympathetic glutamate storm. At least that is what it feels to me. It is the most terrifying concentration camp in your mind and body. It is fucking your worst LSD trip coupled with extreme physical pain day in and day out. Can you smile your way through that shit?? I think not. Maybe the dalai lama can. Maybe few individuals can. I couldn't speak the pain was so great. That isn't regular day in day out pain you get in your foot, or your back. No. That's not it here guys. Please listen up.
My akathisia got so bad it felt honestly like I was having some sort of seizure. The energy rose so high, so painful with head pressure I was sure I might die in my sleep. Everytime I went to sleep in that state I felt I took a chance--live or die? I turned it over to god.
-Don't berate or tell them they are complaining too much or obsessing. When you are in copious amounts of pain-- and I am talking curled up in a fetal position gripping for you life but not wanting to take any pharmaceuticals there is nowhere to hide.
If you are on your deathbed, they dope you up to be comfortable.
Most ppl here know that if they are too comfortable they will have three or four other year long tapers to endure. And many times it won't make things much better.
-Don't tell them it could be worse and to buck up and get on with life. In ACUTE WITHDRAWAL THIS IS IMPOSSIBLE. When you continually invite them out to dinner, or to play a game of golf, or go to a yoga class they simply feel misunderstood and more ALONE. This isn't about being in one's head. It's just not. For those who could turn it around or do yoga, they simply didn't have a horrific withdrawal. I have a very strong friend who is in a recliner most of the day, each day. This is NOT HER CHOICE. She is completely disabled as many of us are.
-We may not look sick but what we are feeling inside is indescribable. Ask us about it. (I will save this for Do's). Some of us DO look sick and it scares people close to us. Arrange for a hairdresser to come to the house, or a massage person, or do their nails for them (Ok, will save this for Do's)
-Yes, we are obsessed with the benzo community because there is the only place many people feel understood and comforted. (However I agree it's not good to spend too much time there) Don't mock our benzo friends. Don't tell us not to talk to them or that it brings us down etc etc. Listen. Ask. Be curious.
-Don't berate, criticize, expect the person to act like they used to. Imagine invasion of the body snatchers. That's what has happened to most of us. We just aren't home hopefully temporarily.
-Don't scare us and tell us there is something else going on other than withdrawal or how this person or that person you know just got off in a couple of weeks. That person DOES NOT REPRESENT THE MAJORITY OF PEOPLE. It is a LIE Big Pharma has sold us and doctors ( Why is it that one of my own doctors admitted that he has been on benzos for 40 years because he simply could not get off---and this guy trusted the asshole doctor that put him on HIGH DOSES for depression and anxiety). The truth is, many of the patients in doctor's offices stay poly drugged. Especially on benzos. They are often not able to stop the benzos and they simply don't even try to. This includes ambien and Z drugs as well.
-Don't recommend the head of so and so hospital. Do you understand that they are clueless?? in denial? They are sadly not able to help most of the time. I don't mean this in a paranoid way. Just the fact that they are NOT INFORMED. And more damage and stress is caused when you are not believed that what you are going through is REAL. John's Hopkins, Mayo, all of those 'reputable' places are doing MORE HARM than they are helping people. I just read a blog of someone who went into a 2200 per night psych hospital on 10mg of valium and ended up walking out on 4mg of klonopin (80 mg of valium). What is happening is a cover-up plain and simple. It's a tragedy and the tragedy is the lack of acknowledgement, misinformation and mismanagement of patients and their withdrawal.
-Don't recommend a 'safe place' to go--believe me, there are SO many of us in this that are desiring that place. Where we are believed, where healing is happening ever so slowly but noone is told to just get on with it and attend classes when we may not even be able to stand long enough to take a shower. There is no such safe place for people sensitive to these class of medications. There just isn't. There needs to be, that is for sure but currently it doesn't exist as far as I know (hey, if someone knows of a secret place please fill me in on it)
-Don't suggest that all of the people on BB are crazy and to stay away from them and facebook groups. I have experienced completely the opposite. These are 'normal' hardworking, strong people, most with no histories of mental illness or disability or malingering. We all want to be healthy and strong and back at work. I have met wonderful strong but scared people through the internet.
-Don't suggest to your partner,lover, friend to hide this from others. Tell others the truth. Speak out against this. That way others will not be harmed in the same way. If I had heard this story from someone else I would never have touched an ativan. Ugh REGRETS. I worked in the field and honestly NEVER thought this could happen from non-daily usage. I didn't understand how this class of drugs works on the brain and it was never taught to me sadly.
-Don't suggest going to groups and yoga and meditation classes when many of us are cognitively impaired and can barely sit still let alone be in a large group of people. I used to LOVE classes. LOVE them. I loved yoga more than anything. I loved learning. I was the workshop and networking queen. I barely want to leave my house. Why? Because I don't feel well enough to do much and my CNS feels so fried any stimulation good or bad, happy or sad, exciting or depressing, feels like too much. I used to love movies, restaurants, shopping etc etc. It's not so possible at the moment. Going to these places makes me feel worse actually because I am keenly aware of all that I have lost and how hard it is to be out in the world.
-Please watch videos, You Tubes, educate your self on what your loved one is going through. I know it's hard to watch other people's suffering but it is IMPORTANT. Those that got off benzos easily never posted online or spent time in forums. It's not about staying in an illness community, it is about understanding on a deep level what your friend or partner is going through. And you do this through your OWN RESEARCH. If your friend was dying of cancer, would you just trust the doctor or would you do some research of your own on your friend's behalf. It would mean a lot to schedule sessions with Baylissa or Jennifer Leigh. To read Baylissa's website and especially Jennifer Leigh's early writing when she was cold turkeyed.
Read about your friend or partner's most worrisome sx--is it depression? akathisia? Terror?
Are there any holistic remedies or holistic doctors that can help? Find out. Do some digging. Your friend in pain is consumed with research mostly because they are desperate to get well and noone is doing research on their behalf. It saddens me that I hear husbands and wives and sisters and brothers not doing research on their behalf. I mean real digging. Not just calling detoxes. Because if you did the research you would find that detox can be a dangerous place for a sensitive nervous system. This is TRUE.
-Check out the resources page here. There are links that you may find helpful. Maybe not.
-Pick up the phone and talk to your friend, lover, partner. PICK UP THE PHONE. Check in. Say I am thinking of you. I love you. I am here for you. You will heal and we will find a way. I am right by your side. Rub their head, their feet. Physical touch is SO important. Most of us isolate in this condition. We start going inward because noone wants to hear what we have to say when we open our mouths. It's burns everyone involved out in a deep deep way.
-DO NOT expect your partner, lover, husband or wife, sister to continue with "business as usual" Shopping, cleaning, fetching the kids on and on. On days when one feels well, believe me they will push to do this. I went grocery shopping in full blown akathisia. I almost wanted to die. I was being burned alive inside. If you could for 10 minutes feel what many of us feel in withdrawal you would drop to your fucking knees. I promise you. Just imagine witnessing your entire family being shot, and that feeling of shock and terror is there day in and day out. No breaks. No sleep. No rest. You can't just "relax" in a warm place, or sit and read a magazine. Capiche? There is NO REST for many of us. No place will feel right because our body isn't right. At least I am speaking for myself. I don't think everyone is the same.
-Again---remember DOCTORS RARELY HAVE ANSWERS FOR YOUR LOVED ONE sadly. That is why we are a community of people helping one another. Doctors do not believe this exists. Why? Because some don't believe their patients and they have been sold lies by the drug companies. Also because the majority of people-or maybe half ( I don't know the statistics) do not have a problems tapering off these medications.
Geraldine Burns told me about a doctor who was on xanax and couldn't believe that it was the pills--he killed himself because he didn't hang on longer.
They want to believe what is on the packet --2-4 weeks and withdrawal is over. This is exactly what a very nice ER doc told me last year. I mean?!!! Unless you are feeling your life is in danger medically or psychologically then 100 percent go and get yourself checked out!! Educated the practitioners willing to listen. It's amazing that many of us just stay indoors and do this DIY. Or others just never get off the drugs to begin with...
I like the doctor I am working with currently. I do. But will I do exactly as he says? HELL NO. That is what landed me here to begin with. I might end up in a hospital because when I was in acute several mos ago my heart felt so unstable as did my akathisia. I also do feel for me there are underlying medical issues complicating my situation. I hope I am wrong and want to be proven wrong.
-Don't say "It's just withdrawal". Yes, it is but it's so much more and it's life altering, and life threatening. It rarely goes away in two to four weeks at least not for those who are sensitive. There are some that are better in an instant. A friend of mine in recovery said he had never heard of this before, yet I sound very much like many others that I read about. It is one of the greatest tragedies happening now and responsible for most if not all of the deaths of the famous people we love daily and yearly as well as so many beautiful souls put on these drugs at age 15 or whatever only to have their lives altered and ravaged.
I was never put on this drug for anxiety. I was given this medication for a medical condition. My on/off usage was never ever cautioned. EVER. I rarely used AT ALL and I am in this strange predicament. Huh? Another friend is damaged with dystonic reactions and akathisia. She never used daily. This is iatrogenic injury. I realize I was in protracted withdrawal BEFORE I took the ativan 3 times per week (after the steroid/antibiotic and benzo). Something in my CNS was damaged BEFORE. Noone was listening to me. Had they listened they wouldn't have told me the sensations and akathisia I was feeling was in my head. It wasn't. Had someone listened, I would not have jumped back on chemicals. I would have taken time off to heal. Period.
I know this is insanely challenging for caregivers and family members.
Please know I know that. We are self absorbed and self obsessed in this process because we are living in survival every single second of every day. I know it's easy to say if you were in these shoes you would handle this differently. Maybe that's true and more power to you.
IF they say they can't go to the grocery store believe them. If they say they can't get out of bed believe them. If they say they are suicidal or talk about death all day long, believe them. If they say they can't go to yoga or meditate because they can't sit still long enough believe them.
If they say they can't pick up the kids, or go to a party or the movies or out to dinner... believe them
Get support yourself if you are the caregiver. This is so hard to watch and so unbelievable. I know this is extraordinarily hard. Hard to stomach the financial pain, the loss of your partner as you once knew them, the person you do fun things with and laugh with. This is temporary. (so they say, I am in it right now so I can't say that with full confidence to be honest).
Take breaks, talk to others, set up a support group, get massages and healings yourself.... but remember you are one lucky bastard you aren't in w/d and I'd trade places with you any day of the damn week.
Check out these wonderful photos..... if you can't remember a time you felt well because your body is so beaten up and worn down by this process, indulge your senses for a minute....
Take a close look at these photos and take yourself there......
One place at a time... focus on healing, breathing and imagining yourself well, able to travel, laughing and enjoying all these wonderful sights and adventures.
Life awaits us. I know it.
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.