I woke up hyperventilating. I wasn’t aware that I was breathing fast, but I did register that I felt like I was suffocating. My hand tingled, and my chest felt as if a Mac truck was parked on it. My spine burned, and my knees throbbed with cold tingling pain. My upper back tingled, and my elbows burned and throbbed. My eyes were dry and sore, tongue burning and jaw aching. The bottom of my feet felt as if I had stepped on a bee hive. I’ve been awake for over an hour and still feel like shit. As I type this, the bones in my hands scream in protest. I have been waking up to pain, anxiety, burning, tingling and muscle aches for so long it really is hard to believe that it is ever going to go away.
I have to clean my house today to get ready for the rescue dog. That feels like an uphill battle. All I want to do is go back to sleep and set my alarm clock for year or so from now. Wake me up when this shit is over. I have been in this wave for a while now. Not that I have ever had a full window with no symptoms. It’s been years since I have had a day of “normal.” I can’t remember what it feels like to wake up and bounce out of bed, ready to face the day, without hurting, burning or tingling, or thinking the existential thoughts withdrawal can cause. When I am in a window, I have such high hopes that I can get my company off the ground and do some good in the world. When I am in a wave, I feel that I ruined my life trying to shake free from that little green pill I dutifully swallowed every night because a doctor told me I had a bad brain and he had just the pill to fix.
It’s foggy this morning. Maybe I will hobble outside and put a fire in the chimenea. Sip a decaf latte and watch the world wake up. I know better than to stay in bed and wallow in self-pity. That gets me nowhere.
I am hoping when the dog arrives that taking care of him will help me distract from my symptoms. I hope so. ‘Cause it’s tiring to wake up, knowing that every day is an uphill climb.
Maybe I will get another window soon. Who knows? Matt Samet said he had “foregrounded withdrawal symptoms for three years.” If that is what my recovery looks like, I better get ready for 10 more months of this crap. Someone wrote to me and said Jack Dobson said he didn’t feel like himself for 5 and a half years. If that is going to be my story, I can’t do the math in my head as to how many months that is. It’s too damn scary.
Ok. Throwing off my linen sheets and pulling on my overalls. A crackling fire might be nice this morning. It will make me think of Aspen. I miss living there. God, do I miss it. I used to dream of driving back and staying for two weeks in the fall. But I can hardly drive for more than 30 minutes the DR is still so thick. Maybe I can make it back in the winter. I loved watching the snow dance its way to the ground. I pray with my whole heart that one day I will be well enough to travel back to the mountains I love so much, my dog by my side, and a pain-free body to walk around in.
Until then, I climb the mountain of withdrawal. It’s still an uphill climb.
Hi Jennifer, I’ve been reading your blog for a few days and was just wondering if you had tried medical marijuana. Using the correct strains, and possibly only edibles, you can likely help many of your symptoms. I began this quest for relief about 8 months ago. While it took a lot of trial and error, I now use various forms of very low amount of high CBD, low THC indica MJ for relief of many symptoms. Best of luck.
David
I won’t try using medical marijuana for two reasons. First, a few of the people on benzobuddies tried it with horrific results. One was thrown back into full blown withdrawal that went on a long time. Second, I don’t want to muck around with my brain. Pot is addictive in its own way, and my brain has already been damaged enough. I don’t want to possibly damage more receptors. I am glad you have gotten relief from your symptoms. But it’s not a route I want to pursue. Maybe I will consider it down the road, but for now, I am hoping my GABA receptors will spring back into action and all of this nonsense will come to an end on its own.
Jen,
I’ve been reading with sympathy the chronicle of your struggles and feel your pain. Your write beautifully and should take away from this process the positive fact that you are helping others on their journies. That is not insignificant. My one word of advice for you is that, while it is incredibly hard to do, recognize that the view backwards from a bad place makes all the time before it seem worse than it was. What I mean is that you say:
“It’s been years since I have had a day of “normal.” I can’t remember what it feels like to wake up and bounce out of bed, ready to face the day, without hurting, burning or tingling, or thinking the existential thoughts withdrawal can cause. ”
And, while it FEELS that way to you from this new low wave you are in, from some of the posts you wrote during your last window, I’m not sure that is entirely accurate. This is not simply academic, but given the need of the mind to grow and heal neuroplastically, believing that things were awful all along may well delay healing when, in fact, there were some much, much improved periods along the way. If you do not journal, you should, especially to truly capture the windows so that you can go back and reread your thoughts and feelings from those better times to sustain you in the difficult ones. Use the writing you to help others to also help yourself.
Hang in there. You will heal. You need to believe that and actualize it.
Andy
Andy
I am a lover of words.I have been writing since I was a very little girl.(I won a writing contest when I was 8.) In fact, I can honestly say that writing has been my longest running love affair.
I hear what you are saying about healing and agree with you wholeheartedly. However, I will explain my written passage: “I can’t remember what it feels like to bounce of out bed….” I wrote it meaning I have not had a day of normal in years. I have not bounced out of bed in close to three years. I have been burning, tingling, hurting, every morning for years. Even in my windows, the mornings start out crappy. I have not had a full window of no symptoms.
I often hesitate to write publically, as this process is so deeply personal. But if I can’t be deeply honest, and write about the dark despair, and only write about the better days, then I am not living authentically. Perhaps I should change the url from benzowithdrawalhelp to benzowithdrawaljourney. I would have more leeway to write about the darker moments without worrying that I am not giving my readers the hope that they want.
The things that helps us heal the most, in my humble opinion, is when someone walks along beside us, and listens fully. Reflects back our reality, without trying to fix it or change it or hurry it along. They just hold the space sacred and journey with us to our deepest truth, no matter how dark. It’s one of the hardest listening skills to learn, I think. I believe I would have healed eventually from my original anxiety, had someone listened. Not with an agenda, but with an open heart and patience for me to unfold at my own pace. Simply listened to all of my fear, grief and shame as I was able to cope telling. Eventually I would have found my way out of my darkness. I would have constructed a way out that was authentic for me. For my truth. My life. No benzo needed!
That is what I am trying to do now, when I blog: construct a way out of this shit. So while I appreciate your well intentioned advice to help me, it actually makes me feel as if I am “not doing things right,” when in fact, at the moment, I am doing the very best I can. We all are. No matter how worn out, or depressed we are. I write what is nestled deepest within my heart. I don’t turn from the pain, or the fear. I know in time, that I will look back and see the stairway I built that lifted me up out of this long journey, and some of the stairs will be ugly and misshapen. That’s quite all right.
When we deeply listen to others, advice is rarely needed (and often unheeded) for the speaker will, in his or her own time and own way, find the authentic truth that is the key to their healing if we allow them the time and the permission to delve deeply into their darkness. Not to wallow in it, but to say, “this darkness is inside of me” and to know that it is ok.
The first book I wrote with my dear friend, Dr. Mark Brady, was A Little Book Of Listening Skills. Dr. Andrew Weil promoted it. It is now out of print. One day I am going to dust it off and get it back into the world. I myself need to reread it, and practice those skills.
It is hard to listen and feel someone’s despair. But that is what often helps others the most. Just Listen. Hold the space. And be there fully. Totally present. Allow the speaker to find their way, no matter how tentative, wobbly, or meandering. For the advice we believe is truth,and we want to give, is often not truth for the speaker (or truth they can utilize at the moment). Allow them to discover their own truth by allowing them to speak whatever words need to be spoken.
Jen,
If I sounded like I was judging you or trying to “fix” you or somehow telling you that you weren’t “doing it right” I am deeply sorry. That was certainly not my intent. I was trying, from a distance, to point out what I thought I picked up in your words to help you by shining a mirror back on you. If I misread or misinterpreted, my intent was nothing but good for you.
Andy
Andy
trust me, I KNOW your intentions are good. I love that we are all a family here doing our best to help each other. I am super sensitive this morning I think. I am just in a dark, dark funk. So tired of waking up to the beast.
You are right, I have been better. Thanks for reminding me.
One of my core “wounds” was not being able to speak my truth growing up. I had to hide my abuse, and stuff my feelings. I don’t want to feel as if I have to “hide” here. That was all I was trying to say.
Thanks for your reply. I appreciate you reaching out to explain.
I am so grateful we have each other, and that we can be real with each other. That’s where the healing resides.
Thanks for your reply, Jen. I feel better knowing you understand where I was coming from. 🙂
I hope your day improves and your spirits with it. My guess is that your spirits are nothing a good dog can’t fix. 🙂
Andy
I have 2 Yorkshire Terriers who would probably together fit inside of the husky you boarded for the day. Of course, they have no idea they aren’t the biggest dogs on the planet. 🙂
Jennifer, you express what I feel. There is a window when all feels alright. Did you ever figure out how make it last a little longer?
Sent from my iPhone
No Rossini,
I wish I knew. A week ago Saturday I felt pretty decent. Was thinking, wow, this is really cool that I have healed so much and I am on the way to being normal. Then Sunday there were chinks in the wall so to speak and by Monday the whole thing came crashing down. I do my very best to be hopeful and positive. But sometimes, it is hard to keep a cheery face when its the same relentless stream of symptoms.
Today I didn’t get going till way after lunch. I am doing my best to make good my promise to clean my very dirty little place, but I am struggling to do even the most simple of tasks. The pain, weakness and dizzy stuff is a real challenge.
I have heard from a few people who say this is no longer GABA down regulation, but rather an autoimmune disorder brought on by the drug. Or, a thyroid condition. Who knows?
All I know is some afternoons I feel great. I even think about attempting to find a wonderful partner to live the rest of my days out with. But it is so short lived.
What are your windows like? How long do they last? When they close, are you sad and scared?
Thanks for sharing.
Hi Dr. Jen,
You seem to have been stuck in this wave for a long time. I know u will get out!
I cold turkeyed from 120mg (Valium equivalent) about two years ago. My symptoms were so debilitating that I couldn’t function without a babysitter (I’m 34!). At 8 months I was just not doing well and I took an ativan (not by choice, it was either that or the hospital) and I ended up totally readdicted. I reinstated at 30mg after doing an ativan to Valium crossover.
I have an amazing physician that has worked out a long term plan to get me off…and I finally reached stability by switching jobs. I start my taper in a couple weeks! I am so ready but I know its going to be an uphill battle and there will be symptoms! I already have them because my body is not really using the Valium to soothe any tension or anxiety.. For that, it no longer has any effect. I am myself, petrified of elevators, scared of heights and claustrophobic in stairwells..I am me. I still suffer joint pain and went through many weeks where I was unable to get out of bed. But I’m ready to move forward.. Slowly but surely I will get there.
I wish u all the best and the most support! We benzo survivors have to stick together. Keep hoping! My dogs saved my life and I think yours will too!
Hello Jennifer, the dog will be a wonderful distraction for you.
I was very ill during my tolerance withdrawal, far worse than I am now and my husband wanted a dog. I was worried about the commitment but nevertheless searched the Internet for the ‘right’ animal. She appeared in the form of a working Retriever. A very pretty, small Golden Retriever of 18months. We travelled two hundred miles to collect her. She’s now been with us for 18months and is my very best friend. She comes everywhere with us and we walk miles with her. She provides diversions, laughter, exercise and close friendship. I really couldn’t be without her now and she has walked the nine months alongside me as I’ve travelled the journey following my cold turkey.
Today I celebrate nine months free of Nitrazepam and forty years free of benzos. My heart goes out to you as you travel your own journey. I am recovering, my symptoms are mostly physical now. You will recover however long it takes. Hold on and believe as the world that emerges with full recovery is so full of beauty and happiness.
With Love, Rosalind