Tardive dyskinesia and thoughts from the mindful healing process….

Hello again.

I have lyme disease (for which I have mostly used Buhner inspired treatments) and I also have tardive dyskinesia, a grave symptom associated with pharmaceutical injury. It seems to me that the TD is the body trying to rid itself of the invading micro-organisms and environmental toxins like pharma and heavy metals, etc. Because TD is associated with psych drugs no one has really studied it. It will come to no surprise among folks with Lyme that it’s not believed for many of the same reasons there is a denial about Lyme disease in general. This is my first post about the two intersecting in my body. I’m only now learning to language the experience. I hope to reach others with TD who have given up on ever finding hope. Lyme disease is marginally acknowledged and understood. TD is not. People are left to suffer and die in agony.

These are snippets from around my several therapeutic environments on social media. By necessity these places have become my trauma therapist via hive mind. There has never been anywhere else to share my process. I frankly freak professionals out and have learned to steer clear. I am grateful.

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I’ve spent a little bit of time in a few tardive dyskinesia groups now and oriented myself.

Certainly the hope for natural treatments here allows me to feel more comfortable. I’m no longer able to take pharma (of any kind) even if I wanted to. I developed severe sensitivity to everything along with the TD also associated with Lyme Disease.

My main way of dealing with TD is surrender– I’ve not seen anyone else speak of it at all — It may seem radical at first but for me, for good or bad, it became the only possible course of action. I was bedridden and nonverbal for 5 years…I’ve been very ill for a long time beyond that.

The TD is only part of the symptom profile yet it became obvious with constant mindful attention (while stuck in bed unable to speak and also thinking very clearly) that the TD was critical to getting well in general. For me it became obvious that the mouth movements and the body shaking were all part of an attempt for the body to detox — the TD being the animal, (think lizard brain) wanting to get detox pathways open.

I realized at some point when I was bedridden that the only way out of the hell I found myself in was absolute surrender. This has meant freely allowing and supporting the TD. Over time it’s become clear that it has a wisdom that only the body understands and the more I listen the better it gets.

This is a crazy hard journey. I don’t recommend what I’m doing and also I’m sharing because it was the only thing I could do and maybe someone else needs to think along these lines. I deeply respect the totally unique path we are all on so it’s not like I think anyone should do what I’m doing. thank you for allowing me to share. I think the worst part of this is not being able to talk about it to anyone.

I don’t go to doctors anymore and haven’t for years. I surrendered to the process….for me TD is the body trying to reclaim itself in a world that has denied what it KNOWS. I’m healing but it’s also a treacherous path…this surrendered path.

it took me years to figure out that no one but me would know my path and I would have to uncover it one step at a time…I started doing much better when I stopped looking for someone who actually knew what to do. I never found that person except inside of me. She knows. All she need do is trust.

I am shapeshifter…it happens spontaneously as I dance with the environment and context I find myself in.

life on the razors edge…living in paradox… surrender …. always beauty amongst the profound hellishness….life is a mystery

The ease of surrender: the body knows what to do as long as “I” get out of the way

Speak your story if it needs to be told – don’t apologize to anyone for it…it’s necessary to heal. When silence is asked for by society it’s rape culture talking. It’s racism, it is every bigotry and injustice that the priviliged want to pretend doesn’t happen… Silence is not always golden

Silence comes in it’s own time…be with what is and love yourself.

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for whomever might be interested this is the general stance on chronic illness that experience has suggested: be the snake, eat yourself

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5 Comments

  1. I take my hat off to you and your resilience. I can understand that your process includes labelling what you discover. My 5cents worth of a question is just; Might it not more helpful to the process of attending to your body’s wisdom if you stayed with the felt-sense perception of what is going on – e.g. hesitant movement, stop and go. fractured nerve-connections – or whatever it is for you? I have found this helpful in the past – and in fact could use it right now for a process again – Best wishes,

    Liked by 1 person

    1. I don’t even believe in lyme disease per se (that’s a whole other post)…I do have to get treatment via that route and the words to speak it and share with others. I hate unsolicited advice by the way. You don’t know me and I use 100s of frames and am attached to none of them. In this space I ask people to share their experience without making any assumptions about anyone elses. …

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    2. Barbara I keep thinking of this comment because I have dealt with explosive infections coming out of my face and body — sores all over my face for the last year I can’t even leave the house I look so bad the mask has been a blessing. People with Lyme disease know what I’m talking about and when you have neuro Lyme disease it affects your brain. No one wants to hear the details believe me. It’s heinous straight up. I don’t believe in Lyme per se because it’s clear that these are lots of different combinations of microorganism issues. Clearly very serious ones in many instances. My life is radically over the line of Fringe and so believe me nobody wants to know and I like to protect myself

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