In general I have a deep and abiding faith that I will get better, but sometimes I’m so damn sick I just want to die. NOW. This is not about being suicidal. I’m simply not suicidal. It’s about wanting the suffering to end. I probably have to repeat for the sake of clarity AGAIN, that this is not a psychiatric issue. I am profoundly physically disabled and the withdrawals make me profoundly ill at times. It goes up and down so I’m not always equally ill.
However, having worked in hospice with people on their death beds, my quality of life is much like theirs. I am not exaggerating this one bit. Granted, I probably don’t have to worry about this killing me, it probably IS NOT terminal, but frankly, I don’t always even really KNOW that.
I do know that a few people who have ended up as I am have taken up to 13 years to heal. Some I know have not healed. Most do recover to some extent even if they don’t get it all back. I don’t expect it all back, I just want to be able to leave the house, run errands, and travel. I want to be able to go to conferences and share my story. That’s all. I don’t need to be the athlete I once was. I don’t need the endurance I used to have. I just want to be free to leave this damn house when I want to by myself. I want my independence back. I feel like I’m in a prison right now. I can do nothing without assistance from others and a lot of it.
The guy who interviewed me for a book on the topic of psychiatric drugs destroying people’s well-being has targeted and interviewed over 70 people who in some way fit this criteria for his book. He is a decorated journalist who wishes to be left unnamed at this point. But having spoken to hundreds of people during his career in which one of his main interests has been how psych drugs poison, he too says recovery is a question mark once it gets as bad as my situation is.
In general I’m okay with this. In general I put it aside and deeply trust that I’m here for a purpose and that my illness is sacred. It has allowed me to touch hundreds of people and help them. And I’m really okay with that most of the time.
But yesterday was another nightmare day. My physical therapist came again. I’ve been sitting every day as she recommended to treat the orthostatic hypotension and my standing blood pressure was worse than the previous time. This time it was 72/36.
I don’t know if it was because she got me up and down so many times or what, but after she left I was overcome with nausea, all over body pain, migraine and I could only lay in bed in a darkened room for several hours doing nothing but meditating and coming in and out of consciousness.
Her plan is to get me a wheelchair. She doesn’t want me standing at all. Every time I stand I get sicker. The theory is the more I sit and not lay down or stand up my blood pressure will improve. Laying down is not good because it makes the problem worse as does standing at this point. My sitting blood pressure is pretty good, so she wants me sitting all day. Literally no standing and preferably no laying down either. For several weeks maybe. This all sounded good while she was here, but when she left I was overcome by all the nausea and migraine and body pain and could not have sat up if someone paid me a million dollars. I made a Klonopin/Valium cut the other day and it now seems to take about three days for me to get hit with the crapola symptoms. The bottom line is my problem is not just the orthostatic hypotension which she is treating. It’s the damn chemical injury, the drug poisoning and no one knows what the fuck to do about that. NO ONE. No one actually knows how these drugs damage us. The most knowledgable folk have simply observed lots of us, but no studies have been done at all.
We are the first generation of guinea pigs on this crap. I took all these meds the first year they were available. I am the canary in the coal mine and so are a lot of other of us.
I woke up today not much better, though I’m writing about it and that’s always a good sign.
I will end on a positive note though I truly don’t feel positive right now.
My therapist, who is a Jungian, is basically on call with me. Pretty much all we do right now is dream work. When I have a dream I call her or send her an email and we discuss my dreams. My dreams are one of the only thing that give me comfort now. I have beautiful, loving, gentle dreams that portend transformation. There is not doubt about this. My therapist feels confident that my unconscious mind is profoundly healthy. It only gives me promising, nurturing messages. That to me is the only bit of evidence that I feel is somewhat real. It comes from inside of me. It is my soul or spirit or simply my psyche, depending on how you want to look at it, speaking to me.
Not everyone believes dreams can tell us things. I suppose I’m still mildly agnostic. But, I do know that the dreams are consistently positive and helpful. My therapist tells me that this is simply not the case for some people. And that people who are truly in mental distress have horrible and painful dreams. (they too can, of course, heal, but the suggestion is I don’t have that far to go) And it’s true again and indicative that my issues are not, primarily mental, but physical. And it seems my unconscious knows that finally I am freeing it from the strangle hold the drugs had on it. My dreams are celebrating my good health.
My unconscious mind knows and loves me and lets me know that I will be okay. In the depths of my being I love myself and am telling myself that I am okay and that I am healing and that I am transforming. Most of the time that is where I let my awaking consciousness lie. In that trust.
I’m simply not there in this moment as I’ve had another traumatic, hellish 48 hours.
Going from one second to the next is sometimes the bravest moment EVER, no matter what expression is on our face.
Hey,
I am still following your blog because I feel very connected to you….
I am making major med changes. Evidently I was on doses of zyprexa and abilify & effexor that are usually reserved for those with schizophrenia. My new shrink is cutting my doses down significantly. It has been over two months of slowly bringing me down to normal levels. I am still having terrible withdrawals though. The bodily discomfort makes me cry some days, it feels like my spine is slowly being pulled out through my neck.
I am so angry. That these drug pusher doctors got me to the point of not functioning…. and now, to get back to normal I have to go through painful withdrawals.
I guess I am so fed up that I don’t trust anyone anymore.
It’s a sad state to be in.
Just wanted to talk to someone I relate to..
Thanks for reading this comment…
Anaïs,
if you’ve cut more than one med down in two months at significant amounts you’re moving too fast…most people shouldn’t have to understand how I feel if they do it safely and slowly…have you spent time on my about page? Please slow down if you’re suffering too much…most docs have no clue how slowly people should go…
you might even want to increase your dose temporarily…
I say again and again…I am not representative of everyone doing this and MOST people don’t have to suffer horribly if they go slowly enough…while also supporting body,mind spirit…with diet etc…
my about page is at the top of the page there is a tab there.
peace.
Hang in there.
Shelby,
your stories of your physical impairments have often inspired me…
you inspire me always.
Susan,
I remember when you shared that story…and I was deeply touched. I often wish these days that I had someone in my life like that.
I volunteered in hospice for a total of three years. I sat with many people when they didn’t wish to speak. I also did it for my brother when he was dying. One of the men I worked with also asked me massage his feet each time I saw him…
No one wants to see me anymore–none of my “friends.” Not anyone in North Carolina…sickness scares people–I don’t really understand it, but no one comes around or calls or asks if we need anything.
I do have friends who are coming to stay and help take care of me from CA…I wrote to all my best friends and asked them if they could come stay and help me and my husband. Several are making trips this year. Coming to the Appalachians at my request! Those are true friends! And I’m grateful I have them, even if they are not nearby…
This is very difficult for my husband. He has to do everything…
anyway…I know and expect that I will be able to have these close friends of mine hold my hand in moments when I cannot speak or when I’m curled up in pain…
but here in NC…none of the people I know love me like that. My husband is a solid support but he works too much and so I am alone most of the time and not by choice.
My closest friend will be here the first week of April for a week…I can’t wait…
and Susan, your response was fine…it’s okay…I love you…we don’t have to share all our sentiments…and I know, too, that if you lived here you would visit me…you are not afraid…I can see how beautiful you were with your mom…
Dear Gianna,
I’m so very sorry to hear this. I wish I could just sit with you in silence. One of the loveliest stories I’ve ever read was by Parker Palmer who experienced this year-long devastating depressive episode (I realize yours is physical), and nothing anyone said helped him. But, his friend Bill came by every day, and just sat without speaking, and washed and massaged his feet.
To me, that level of friendship was extraordinary. But, these loving responses are too.
Love,
Susan
P.S. Sorry I responded to you on my blog without reading yours first! Today wasn’t my best day.
Our minds can go where our bodies can not.
Before I was correctly diagnosed with a rare form of demyelinating disease I spent several years in sheer physical painful decline.
What helped me refocus was some great CD’s by Belleruth Naparstek- wellness, safety, peace, gratitude, patience and affirmations, Her voice is so beautiful-the earlier recordings.
Some years later I got better. I will not be once what I was but more than happy to have the now “me”.
Even through you are ill you are touching/helping so many.
nor lucrative, hence (maybe) the lack of it so far?
that’s all it is Eve. No money in it…unless of course they decide they want to try to make drugs to heal the drug damage…but again, I wouldn’t touch a new drug on the market for anything…and I know most of the people who share my experience feel the same way.
drug money drives research in medicine…pharma won’t even admit I’m a casualty…they won’t study us…
but like I said, I’m just the beginning of the first generation of people meeting this end…there will be hundreds and thousands of us soon enough…and then maybe, maybe someone will do something.
I’m so glad you came by…I love the Jungian stuff…
Gianna, thank you for this article. It’s no coincidence that I’m reading it today, perhaps, as I’ve been reading Jung’s Collected Works, most specifically his stuff on the unconscious. Something I read yesterday relates to what you wrote about your beautiful dreams, namely that the unconscious provides the balance to what is made manifest consciously. We dream what we do not live so as to balance out our whole person.
I’ve been thinking about the big swings life can bring to people (and often does) as ways of prompting us to live out our unconscious and ultimately to achieve balance and thus wholeness. I’ve been wondering about how we begin to manifest the unconscious so that our conscious lives are more balanced.
I hope that a breakthrough occurs for you this year, and this may be the year for it. I know a lot’s happening in the heavens in terms of big upheavals and transformation around the end of May or beginning of June. Perhaps you’ll get a planetary push and gift, and your beautiful dreams will manifest some blessing in your everyday life. I sure hope so.
And on another note, I’m wondering why nobody is studying this? If at least one journalist is interested in it, and we know others are writing about it, then it seems to me that the scientists ought to follow. Maybe “ought” is the operative value-laden word, eh? ;o) But, yes, we need some research. I imagine it would not be popular research, nor lucrative, hence (maybe) the lack of it so far?
hey..thank you everyone…the process of writing these kind of posts and getting your loving support is the best part of doing this blog!!
and a special mention to you bipolarlife!!
I gotta hand it to you! you nailed it on the head…I’m not depressed at all and I am pissed as hell!! How dare the universe deal me this hand of cards?? how dare it!! HA! we don’t get to pick, do we!!??
and yeah…it does fuel my energy…thank you so much for seeing me.
I feel bad for the way that you are feeling right now but I know that you aren’t going to give up. Your body may be weak but your spirit is strong. I don’t remember if I’ve told you this story before. A close friend of mine, a very vivacious woman, one day couldn’t get out of bed. She went though a lot of testing but the doctors couldn’t figure out what was wrong and labeled it chronic fatigue syndrome for lack of a better diagnosis. For two years she rarely left her bed. Going outside to sit in her garden to enjoy the sunshine would incapacitate her for a day. To add insult to injury she also couldn’t sleep. Medications didn’t help, rather they strung her out. Finally, the doctors pushed her to go on anti-depressants. Knowing my experience she asked me for advice and I told her she didn’t need them. She wasn’t depressed, she was PISSED. She practically glowed with anger at what was happening to her. She spent the next four years researching everything that she could find about her symptoms, tried all kinds of conventional and alternative treatments and she finally, yes finally found a combination of things that have allowed her to get better. She’s probably 65% of her prior self right now but at least she can do most of what she wants to do.
This is what I see in you. You’re pissed off and you are using this energy to seek out ways to get better. It will take time but I believe that you will get there, simply because for you there is no other option.
I agree – you are immensely brave and need put on no “brave” face. In spite of the intense physical disability, your true self shines through, and that certainly includes courage, perseverance, gentleness… I could go on.
my thoughts go out to you….
i agree with everything everyone here has said.
ana is correct, give time for your body…and your mind. you are strong. you are a fighter. i hope someday and hopefully soon, this will all be a distant memory. yes, no one actually knows how these drugs damage us…we are and have been guinea pigs but keep writing, more people will follow (they already are) and someday maybe our voices will be heard loud and clear and we’ll see the research we so greatly deserve.
much, much love to you!
You will find balance Gianna.
I’m sure you will. It only takes time.
They will not study. They can do research on us on what concerns helping they creating more drugs.
But they don’t give a damn about side effects, withdrawal and iatrogenic diseases.
It would require a lot of political pressure and it’s not happening.
You are withdrawing one of the most difficult benzos to withdraw. Add this to the withdrawal from other meds and it’s explainable whey you feel these way.
It’s crap. Really makes one believe that there’s no end.
But give time for your body.
Love,
Ana
and, you don’t need a brave “face” to be brave….
you’re plenty brave just the way you are,
duane
Gianna,
Somtimes it helps me to read something I’ve read before…Something that brought me a sense of peace in an earlier time…a sense of profound comfort at a different time…
I sent you this once before, and send it again today, in hopes that it provides you these things…
I know you are in profound pain….I only hope you never lose hope in the ‘feast’ that awaits you one day –
‘Love After Love’
The time will come
when, with elation,
you will greet yourself arriving
at your own door,
in your own mirror,
and each will smile at the other’s welcome,
saying, sit here, eat
You will love again the stranger who was your self.
Give wine. Give bread.
Give back your heart to itself,
to the stranger who has loved you all your life,
whom you ignored for another,
who knows you by heart.
Take down the love letters from the bookshelf,
the photographs, the desperate notes,
peel your own image from the mirror.
Sit. Feast on your life.
– Derek Walcott, Nobel Laureate – Literature, 1992
I’m so sorry that you’re going through this nightmare, Gianna. That blood pressure really worries me. Is there not something that can be done to rectify that?
Well G-baby, I don’t know what to say when you are having such a crappy time & here I am, hopelessly far away…
[it makes me feel like a dumbass for whining about my relatively-minor complaints, but I’ll post an update later regardless]
All I can do is send positive healing vibes your way, & rest assured that I am thinking of you & hoping that the worst of your suffering will soon be behind you…
XOXOXOXO