Healing

Stifled

~ gypsy116toast2001 ~ Leave a comment

I am feeling torn. When I started this blog, my intent was to write it in the same vein as my old blog, the original Through My Eyes… That would be very open and honest… raw.

While that is still my intent, I’ve had life circumstances that I do not and don’t know if I ever will feel ready to share. This has left me feeling…stunted… Bound up… Like my hands are tied. I feel creatively stifled.

Anyway, for now…I have been having some weird chest pressure for awhile. I’m unsure of the cause and I’m unsure if it relates to the previously mentioned life circumstances. But… Today, I was given a heart monitor that I will wear for a week. I may write more about my symptoms and feelings about this later, or I may not 🤷

While pouring my son cereal…

~ gypsy116toast2001 ~ Leave a comment

I know that I have been MIA. I’ve had a life circumstance that I have not wanted to discuss publicly. I am still unclear on when, if ever, and what, if anything, that I will want to share. What I will say, is that I’ve had a recent hospital stay (nothing for anyone to worry about, with any luck the situation has now fully been resolved. If you would like to send any kind of positive energy that that is in fact the case, it would be appreciated) and it’s got me thinking.

I’m feeling curious about communication. How much of what a person “hears” you say is only their interpretation? How much is what they actually heard you say? Your actual words?

During the interview with the doctor at the hospital, the one where they take the “history” of the presenting problem, I had mentioned getting my son breakfast. While looking through the after visit notes in MyChart, I saw that the doctor had written that I had said, “while pouring my son cereal”. I most definitely did not say that. My son has never even tried cereal. That is something that has met full on rejection at anyone’s suggestion. What I did do was put peanut butter and syrup on a chocolate pancake (Kodiak cakes) that his dad had just finished cooking and mixed up his electrolyte/multivitamin/magnesium/mineral concoction that we refer to as “juice”.

There were several other discrepancies too but none that stood out as so blatantly not what I said. I’m not upset about it, it’s not the doctor’s fault, this is how brains work, right? She heard getting breakfast, getting breakfast to her means cereal, in her memory her brain translated my words into pouring cereal, yeah? But it is a bit disturbing.

As someone who has been severely mistranslated in the majority of conversations I’ve had over my life (I’m not joking, nor being hyperbolic. If I’m not talking to someone who is very close to me, there’s a very good chance that I will be misinterpreted), I wonder how much of what we humans hear other people speak is our own translation? Also, I wonder if this is something that neurotypical humans are particularly bad at? Or maybe it relates to the double empathy issue? Like are neurotypicals more likely to mishear, i.e. hear through they’re own experience, a neurodivergent human? Vice versa? How do we take care not to misinterpret by interpreting through our own memories? How do we actually hear each other? Is it possible?

Thoughts? I’d love to hear them in the comments.

“That” pattern

~ gypsy116toast2001 ~ Leave a comment

Someone that I know died recently. I know, not really the polite way to start this but I figure I might as well cut to the chase. I don’t want to talk about this person specifically. I didn’t know them well enough. They have family, loved ones, that story is theirs to tell, should they choose. What I want to talk about is the effect that this death is having on me.

Deaths occur in the periphery of our lives all of the time. Someone we knew from school. Someone we used to work with. People we knew from various places and various times throughout our lives. Deaths we hear about in the news. Even the deaths of celebrities. These deaths impact our lives in varying ways. At least, for me, I know this to be true. Some hit much harder than others. This one has me slayed.

The first place my mind goes, anytime that I hear of a death, is the family. I imagine the anguish they must be going through. This is particularly difficult for me if there are children involved. This death is no different. As intensely as I feel all of that, it isn’t what I want to talk about. While it hasn’t been said directly, it appears that this death was a suicide. I’m triggered by this.

I’m no stranger to suicide. Having spent more then half of my life mired in suicidal ideation, and knowing others who have completed suicide… family members… Others on the periphery…

A significant number of these people had reached out to me in some way. Some to ask directly for help, others asking for support but in ways that were more subtle. This person included. I helped in what ways I could within my own limitations. I’ve experienced guilt in each of these instances. If I hadn’t let my own issues, my own fear, social anxiety, my own whatever interfere, perhaps I could have been better able to help.

Sitting here today, I realize that I am also experiencing survivors guilt. Like I said, more of my life than not, has been spent in the agony of depression, despair, hopelessness and suicidality. I have a deep and visceral understanding of what it feels like to want to die. To not be able to see your way past the pain. To want freedom but have no means of escape other than ending you own life. I know what it feels like to attempt to end your own life.

I also know what it feels like to survive. I was fortunate enough that my attempt was only that, an attempt. I am fortunate enough to have lived to see the other side. I no longer live in a state of perpetual pain, not in that way anyway. My life is far from perfect. There is a lot of shit that I deal with, especially with my physical health. That said, I have healed and thus know that healing is possible, in many ways.

I am feeling guilty for this. Why do I get to live, while these others do not? Why was I able to move past all of that? Why was I able to release myself from that hell? There’s nothing special about me. These people deserve healing, freedom, as much as I do. Why me? Why not them?

I was able to survive. Does that mean that I have some special knowledge that I could have imparted? Could I have helped? Did my own selfish focus on my problems prevent that?

I know that you cannot save another person. I do know this, but I’m feeling guilty for not trying. But what do I think I was going to do? Be such a good friend that they would no longer want to die? That’s absurd. No, more likely I would’ve given of myself to an unhealthy degree trying to ensure that they could not kill themselves. That is my pattern, isn’t it? Trying to save others, no matter the cost to myself? That is where my focus should be. Healing that is the only way that I can ever affect any real positive change. The only way that I can truly help anyone.

Progress Report

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I am aware that I dropped my mom’s being in the ICU here and then disappeared. For anyone who may have read that post and/or may be concerned, I wanted to let you know that as of yesterday, she is home. Her hospital stay was one complication followed by another and I have had and still do have my reservations about her being sent home. I’m of the opinion that she would have been better served by being admitted to a rehab facility temporarily before coming home. To say that it’s been stressful is more than an understatement. As of right now though, she does seem to be doing alright. She is weepy, in an exhausted, I’ve barely slept in two weeks but grateful kind of way, but she’s doing fairly well.

Since I’ve been up, she’s told, through tears, how grateful she is for me. She’s done the same with my partner and says when she talks to my sister, she’ll tell her the same. I bristle, unsure how to react, every time she does this. I’m not used to praise or any kind of positive acknowledgement of my existence coming from my mom. I’m used to something more akin to criticism, disapproval, judgement. I want to encourage this positive development but it’s uncomfortable and you know, I don’t trust it. We don’t have that kind of relationship. I don’t know how to respond.

I’m not doing great, in general. It’s hard to explain. COVID-19 has once again left it’s mark. I feel the same way that I did after I had it the last time, only not as intense. Last time, I couldn’t move, everyone had to help me. This time, I technically can do things for myself, so I do. I don’t think I actually should. I think my body needs far more rest then it’s getting. The people around me aren’t jumping to help me. They see me up and moving about and assume I’m fine. The problem though, really, is me. If I can technically do something, I do it. There isn’t enough energy to go around. I won’t ask for help.

One last thing. Currently, I see two therapists weekly. Therapist number one for trauma. Therapist number two for autism related concerns. I cancelled my appointments with both of them the past two weeks. I’m contemplating cancelling again. I’m also contemplating telling therapist number two that I need to take a break for awhile.

I don’t know how to explain the effect that appointments have on me. My entire body becomes both tense and activated. That alone is exhausting. On top of that, sleep becomes almost impossible after a session. My mind wants to obsessively follow every thread of conversation that was had. I can’t stop or even slow the thoughts. I’m exhausted. I don’t know that two to three appointments a week is sustainable right now. I don’t have the freedom to rest enough to make it feel doable. I’m just so tired.

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I want to ask anyone that reads this to send love, light, good vibes, juju beans and/or prayers to my mom. Whatever it is that you do. Whatever it is that you got. As long as it’s positive and healing, it’s appreciated.

My mom had knee replacement surgery last Wednesday. She’s been home since Thursday. Her knee seems to be doing well but she’s been having other issues. She’s now in the ICU with a blood clot in her lungs and scarily low sodium levels.

I do know and understand that our medical system can and does save lives but with the way that it’s set up, oftentimes it does more harm than good. It feels like a conveyor belt trudging along, patient in, patient out, as quickly as you can. This assembly line process is further hampered by bureaucratic bullshit and many physicians who assume that their medical license e makes them all knowing demigods. The system is not set up to hear patients.

In my personal life, the stories of people injured by our medical system in ways that could have easily been prevented had someone simply listened to the patient and gave them the benefit of the doubt are myriad. Like hey, maybe because it’s your body, you might have some useful input. I know someone who was sent home from the ER with medication for a migraine, after telling the doctor that they’ve had migraines their whole life and this doesn’t feel like one, only to have a stroke. Someone else who made repeated trips to the ER… It’s just the flu, nope an issue with their thyroid that caused brain damage. A young woman who died after thyroid surgery. She complained that she couldn’t breathe. They gave her anxiety meds, she was hemorrhaging. I could go on and on.

Myself, specifically, was sent home from the hospital when I had my son, after repeatedly saying that I didn’t feel right and thought I should stay. I was sent back two days later with postpartum preeclampsia. I could have easily died. I went only went to the doctor for severe constipation. I had no idea that blood pressure was sky high.

I’m writing this to ask you to send my mom love. I truly believe that healing energy helps. But I also want to spread awareness about the importance of listening to yourself above your doctor when something feels wrong in your body. My mom has been complaining about symptoms that didn’t seem right to her since she had the surgery. No one listened. I’d like to say throw a fit but I know from personal experience that that may not be enough. My partner threw a hell of one after my C-section, they still sent me home. My advice? Threaten legal action. Keep screaming until someone listens. Your life may be on the line.

Contradictory Juxtapositions

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Man, I am full of contradiction today. Just a jumble of juxtaposition.

I’m fairly certain that I’m coming off of the tail end of covid. I say fairly certain because I know that I had an exposure but it was a roundabout kinda thing after which I had an uptick in allergy like symptoms. Nothing horrible except that I was really dizzy and dead fucking tired.

Because of the nature of the exposure and the mild nature of the symptoms, I felt like I was sick but it didn’t seem to make sense that it was covid. Now though? I feel like I did after covid. Not quite as intense but the effect is the same. My chest is heavy, it’s hard to breathe. I’m having chest pains. My back hurts. I have no energy. Symptoms from my chronic illness are increased.

My initial thinking was, well, at least I didn’t get as sick as last time. I was so sick. And you know what? I am grateful I didn’t get that sick but… There is a part of me that is like man, fuck that. If I have to deal with the consequences of having covid, then I might as well have gotten really ill. At least then people acted like I was sick. At least I was allowed to rest. As is, everyone treats me like I’m fine, no matter how awful I say that I feel. I’m not. Fine.

Here’s what’s really bothering me today. The increase in heat intolerance. I realize that I haven’t really gotten into the symptoms of my illness here. Maybe I will someday, maybe not, but heat intolerance/an inability to regulate my body temperature is one of the most significant symptoms. It impacts every second of every day of my life. It also greatly impacts those around me.

The way that this symptoms shows up in my body if beyond difficult to explain and impossible to understand if you aren’t, in fact, inside of my body. I could say that I’m hot all of the time but that isn’t actually true. Though I do need my environment to be cold to function. We basically live inside of a refrigerator. I could also talk about the ways and the things that raise my temperature but you’d hear it through your bodily experience. You’d think, yeah being hot sucks but what’s the big deal? Being hot isn’t the problem. The way that my body reacts to being hot is. I have no words to explain this.

For now, all you need to understand is that I am unable to regulate my body temperature and I need my environment to stay cool so that my other symptoms don’t become life threatening. Also, that as much as it doesn’t make sense, this symptom (along with all the others) is much worse in the winter. Most of the other people I’ve come into contact with this symptom, the opposite is true. They have more difficulty in the summer.

That seems to make more sense, I mean summer is after all, hot. For whatever reason though, summer is easier for me and I typically do better outside. I’ve been able to go to the beach on a hot day. Provided I had plenty of food and water, I did fine. The affects of covid change that. Currently, I can’t go outside for very long without becoming weak and nauseated.

Awhile back, my sister and I were talking about this paradox. I was saying that I am so grateful that the heat intolerance is worse in the winter. It sucks, like really fucking sucks because winter is so much longer than summer and our house, well, it has to be really fucking cold but…. If I wasn’t able to spend time outside. If I wasn’t able to go to the lake and go swimming… That’s when life becomes not worth living.

It’s really hot this week. My sister and I had talked about taking the kids to the lake. I don’t know if I’ll be able to do it. Pray for me. Pray that my recovery from this round of the hell that is covid is swift. Pray that my mermaid soul is able to spend time at and in the water where she belongs.

One last thing. I’m feeling really angry and a bit bitter towards my mother. The exposure, in it’s roundabout way, came from her. She spent time with family from out of state…covid ensued. I understand that it isn’t logical. She didn’t do anything wrong, just hung out with her sister who she hasn’t seen in like five years but… There is a pattern here. One in which my mom makes hurtful decisions that involve her loyalty to her family of origin over the family she created. This triggers me.

Illogical. Juxtaposed. Contradictory. Feeling hopeless but holding onto hope. Yeah, just pray for me…

Ovulation Blues

~ gypsy116toast2001 ~ Leave a comment

I’m feeling sad today, or no, more accurately, I’m feeling sad right now. Today I am feeling all kinds of emotional and my mood is all over the place because I’m ovulating and apparently, at least for this month, this is what it does to me.

I don’t really get it though. I’m ovulating. My body, my hormones obviously want me to have sex (oh, yes they do) because the whole idea is that I have an egg and biologically we want it fertilized (biologically only. I in no way, shape or form want more kids. I love my son but… I’m Good), right? So…. Why make me wanna curl up in a ball and sob? Doesn’t seem helpful. Hormones, what do you do?

Apparently, my grandpa died five years ago. I know because a poem I wrote at that time came up in my Facebook memories today. No need for condolences, it wasn’t that kind of death. My grandfather was a narcissist and a womanizer and a child molester. No, that’s not what is bringing up the sadness. What it does bring up is the confusion I felt at the time of his death.

The Patriarch

Confusion bleeds
As invisible as the wounds left
By your hands upon my skin
My sadness repulsive
Tears staining my face
Despite my own disgust
Your death
Inconvenient
Causing guilt
To stain my conscience
Saturated in filth I cannot cleanse
Unlike your hands
Washed clean
All of the ghosts you’ve disavowed
Buried in shallow graves
They haunt me
This scarred lineage your true legacy
And yet I am surrounded
By your false image
And all of this grief

I think maybe, a long with pain and trauma, confusion is one of the biggest legacies left behind by abuse of any form. I’m reflecting on that today. My whole life has been shrouded in confusion. Confusion in the wake of abuse. The confusion of a child. Confusion stemming from being if a different neurotype and not knowing it. The confusion of not understanding my place in this world.

I still don’t… understand my place… But I’m working on it… And I have more pieces of the picture that is me…. And maybe that’s all that really matters. And maybe for the moment, I just need to grieve for that little girl with none of those pieces. I just need to be sad.

Baby Beluga

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I went to the zoo the other day, which by the way, is massive in terms of my healing. But anyway, I went to the zoo and I’m pretty sure that someone, a fellow zoo visitor, referred to me as a whale.

I posted this on Facebook awhile back…

This came up in both my memories and my sister’s. We talked about it, you know, haha weren’t we cute. Then she said something that surprised me. She said that my arms look so skinny that I look so small.
I am 15 here and 132lbs. How do I know that? The 132lbs part? Because I thought I was so fucking fat. Honestly, I can tell you how much I weigh in damn near any picture of me. I’m more likely to know my weight than my age. I have never been comfortable in my skin unless I weighed between 110 and 122(preferably not over 118).
I am currently obese. There are no pictures of me because I can not stand to look at myself. Not only am I overweight but I have severe diastasis recti, my abdominal muscles are separated, deformed and I look very pregnant. I have an understanding of why my body is the way it is currently. The diastasis recti was caused by a lack of energy, my body is unable to convert food into energy in the way that a body is meant to combined with a C-section that caused the muscle to be unable to move and kept them in their separated position. My body overcompensated to get my son here healthily. I am incredibly grateful for this.
Many people who suffer from mold illness gain a lot of weight and are unable to shed it. I forget the technicalities of what is happening in the body (though I can find articles that explain it). Mycotoxins store themselves in fatty tissue and the body basically convinces itself that it is starving to death in order to gain fat and prevent the mycotoxins from storing in the brain causing brain damage (this is why liposuction is a legit detox treatment for some people with mold illness). I am also grateful for this as well. There is no good reason that I was able to get my son here healthily or that I am even still alive except that my body is amazing and it did what it needed to in order to protect me and Eli. Miraculous. Yet, knowing this I still cannot stand to look at myself and going in public is hard. I’m filled with shame.
I am 15 in this picture and about to start dating the boy, who became the man, who is now my ex husband. The boy who referred to my stomach as squishy…pudgey.
I am 15 here and I’ve already lived through years of my mother hovering over me while I ate, making comments about how I didn’t want to end up fat like her.
I am 15 here and about a year away from anorexia and decades of disordered eating.
I am 15 here and 132lbs
I am 15 and my worth was not, is not, will never be determined by my weight or body shape…
But I didn’t know that.
We need to do better.

I absolutely believe that… That my worth, your worth, anybody’s worth, is not determined by the shape or size or anything else having to do with our bodies. And… I so badly do not want to be bothered by that comment… The one in which I was compared to a whale. I mean, the comment really is not a reflection of me but of the commenter. It says nothing of my character but a lot about his.

I want the comment to roll off of me like water, having no affect. I want it to be a non issue, unimportant but…It did affect me. It hurt. And honestly, I spent a good deal of time berating myself for that fact.

How dare I be concerned about something so insignificant when there are real problems to worry about? Things that affect everyone, not just myself. Most notably, in my mind at the moment, the environment… climate change… Mama Earth. I should be using my energy to figure out ways that I can change… That I can help (I’ve been using more sustainable/non toxic products more and more but that’s not enough!), not worrying over an insignificant… unimportant comment about my weight.

The more I thought about it though, the more I realized that it is important. It’s like I said in my Facebook post… We need to do better. It is important that we, all of us humans, grow up knowing our worth. Not just intellectually but in our bodies. It’s important that we know it to and through our bones. That it resonates in our thoughts and feelings, minds and hearts. That we are at home, at peace with ourselves. People who feel good, do good.

Conversely, people who feel bad are more likely to do bad or at least become complacent, not believing that they are significant enough to make a difference. Or like Mr Judgemental Commenter, to spread more of the same… Not seeing others as human, as deserving… seeing others as separate.

We’re not… separate… Not really. We are in this thing, this life together and just like we do all need to do better in the ways in which we treat our planet, we also need to do better in the ways we treat each other and ourselves. I’m not sure the two are mutually exclusive. I think they may actually be the same thing.

Teeter Totter

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I have so many things that I need and want to do yet, every time I have even a moment to myself I feel the need to rest. I have no idea how to figure out any sort of balance in this.

Take today for instance. My son is out in the garden with his father. I would like to work on assembling my cookbook, or assembling (for lack of a better word)this blog but….I spent all day at my sister’s for Mother’s Day yesterday. It was too much, I was beyond exhausted. I am surprised at how well I feel today but I know if I push it… If I don’t rest today…a crash is likely.

When then, do I work on things? I suppose it comes back to focusing on healing, doesn’t it? The more I heal, the more I will be capable of. *Sigh*

One day at a time, one foot in front of the other

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I’ve just started reading No Impact Man by Colin Beavan. The book follows a man and his family, over a year, while they try to lower their impact on the environment to virtually nothing. I bought this book because I’ve read other life as experiment books and enjoyed them and I was hoping to pick up some tips on decreasing my impact.

This is something that I think about a lot. And when I say think about, what I actually mean is panic. There are so many changes that I’d like to make, feel like I need to make, that my illness gets in the way of.

Things like making my own self care products, shopping locally, walking instead of driving… Are all rendered impossible when you don’t even have the energy to get through the basics of living on a daily basis.

I am constantly telling myself to focus on my healing. The more I heal, the more I will be able to do and the more I will be able to live a life aligned with my values. This is true, but… The guilt I feel…. And the panic…

*Sigh* One day at a time, one foot in front of the other…