CIRS

Through Community

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I had a dream. It was a few years back and in this dream an angel came to me. This angel told me that if I did not heal I would die young but that I wasn’t meant to. That I needed to accept help, that my healing world require help from others. The angel also said money would be involved but not too worry about that.

Because of the money part of the equation, I had assumed that the help was meant to come from those in the helping professions. While I do still think that’s partly true, I know that isn’t the only help that was meant. Balance is a constant struggle and I require assistance from those around me, both because there are things that I’m not capable of doing for myself and because the little energy I have is needed in my healing process itself. I know I’m not alone in this experience.

So, what do you do when your caregivers are at the end of their rope? When either their life is full with their own tasks of daily living or they overextend themselves trying to help others who may or may not be their responsibility? What do you do?

I can’t speak for others but I feel a tremendous amount of guilt. It is not my fault that I am sick and I am doing my level best to heal but I feel like a burden and there is truth in that. My loved ones will deny that, over and over, but in truth, whether we want to use the word burden or not, my existence causes a hardship for those around me. It does.

Caregiver burnout exists. Mistreatment and/or abuse by caregivers exists. These things are commonplace and as deeply personal as this reality is for me it is not a me problem. This is a societal problem. Any system that requires it’s participants give their all to and rely solely upon it is doomed to fail. We know this. I don’t pretend to have the answer but what I do know is that we are human. We are mammals. We are pack animals. We survive through tribe. Through pack. Through clan, group, family. We survive through community. What ways can we begin to slowly bring our centers back into community? I’d love to hear your thoughts.

Confessional

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I have a confession to make. I love my son, like more than I could ever possibly describe. He is my everything, but… Right now…I do not want to Mom, like, at all. And that my dear friends, is causing me to feel like a massive piece of shit human.

Here’s the deal, my recent life circumstances made it impossible for me to care for him in the way that I normally would. Thank everything holy, his dad was able to step in and fill the role that is and has been since my son’s birth, mine. The role of primary parent.

The part of me that feels like a massive piece of shit human wants to tell you that I got used to having less responsibility and I don’t want to give it up. The part of me that loves to beat myself up for everything, even the things out of my control, wants to hang it’s (my…our?) head and wallow in shame, calling myself selfish, self centered, lazy, uncaring, heartless, bad bad bad… Bad mom. The truth, I think, is more complicated.

I have, since my son was born, as is my tendency, given too much of myself. I, mostly on my own and chronically ill, attachment/gentle parent an autistic, PDA child. If you don’t understand what that means, I took the hard road without near enough support, in a broken body, with a child who is “extra”.

Looking back, I would not change the decisions that I made in my choices of how to parent but…I was burnt the fuck out before life just knocked me on my ass. *Sigh*. On top of that, the ass kicking that the universe just bestowed upon me, made a couple of things very clear to me. If I want to heal, I have to put myself first. I have to engage in the activities that bring me joy, peace, and help me to process. I have to invest time in my healing. I don’t get to just half ass try and fit healing tools in on the sly when I steal a moment alone. I HAVE TO. If not, my son won’t have a mom at all.

I wrote recently about how I healed the first time that I had a run in with chronic illness. On my own, in a safe space for the first time in my life, I spent my time learning what I needed (that’s key, what I actually needed) and immersing myself in those routines/activities. This is how I became regulated. This is how I healed.

I’m in a tough spot right now. My son’s father will be returning to work soon. I will have to go back to full time primary parent. And this is where I feel like a selfish asshole. I don’t want to. I feel resentful about it. I think that that actually makes sense though and it definitely doesn’t mean that I am a horrible person or mom. It means that I need to focus on healing and I an unsure of how to navigate this. How is it possible to find balance? It means that I’m scared, terrified really. What if I lose the gains that I’ve made? What if I’m unable to heal I’m this circumstance? What if, and I think this is my biggest fear, what if I don’t make it? And by that, I mean, I either become fully incapacitated or I lose my life and… The part of that that kicks me in the teeth, rips my guts out, stabs me straight through the fucking heart..my son doesn’t have his mom.

I feel like I need to be selfish temporarily,in order to ever truly be what he needs. Pray for me. Send me love. All the good things that might help me to figure out this balance. Or advice? Leave a comment below.

Realization…unmasking as the key to healing

~ gypsy116toast2001 ~ 1 Comment

I’ve just had a realization.

I’ve been sick for almost 12 years but this is not my first run in with chronic illness. I was sick first, when I was about 19. I was only sick for a year or two and while debilitating, I was not as sick as I have been this time.

The causes of chronic illness, in general, are complex. My situation is no different and I’m not going to go into all of that in this post. What I do want to talk about is my “recovery”.

At the time, I attributed my healing to diet changes. Other than rest forced by the illness and a few supplements (I can’t remember any specifics other than a prenatal multivitamin. That was my doctor’s advice. Rest, take a prenatal and, you know, don’t be stressed). If you’ve read any of my recent posts, you know that I am doing Primal Trust, and that I believe nervous system regulation to be key to healing. Not that I think the diet changes and supplements had nothing to do with my healing, I am positive that they contributed but… What I just realized, is that it was nervous system regulation that was the key.

This… This all comes back to me being undiagnosed autistic. At the time of my healing, I was no longer in school and had just moved into my own house. My ex husband and I were in the best place, relationship wise that we ever were. And I… I had a lot of space to experiment with just being myself. I, my dear readers, was unmasked for the first and dare I say, only time in my life.

My days were spent doing as I pleased with no fear of repercussion. I got up, took a bath, exercised (as I became able), sang (I’ve recently realized that this is my biggest stim), danced… I spent all of my time with my animals or with my then husband, who, at the time, I trusted. At night, we watched movies and I engaged in my special interests.

This is not a life that is supported by the society that we live in but it is a life ideally suited to me. Add in abundant time in nature (which hey, guess what? I had my own home with a pool, I was out in the back yard a lot in the summer) and I’m in heaven. Of course I was regulated. Of course this was the only time in my life that I’ve ever felt truly healthy.

My task then, (and this really is THE task of all neurodivergent folks (and honestly, of all people, it’s just that it comes glaringly into focus for those of us whose needs are further outside of the societal norms), isn’t it?) is to find a way to build a life that suits me within the confines of this oppressive society (all the while, attempting to effect change in any was possible). A life that prizes space and creativity and regulating movement/sound and nature and deep deep dives into the topics that feed my soul…

This is no small task. All the more reason to keep talking about our needs as autistic humans. This is integral to our health, to our very existence. This is essential to a healthy society as a whole.

Stifled

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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 🤷

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.

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…

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…

Guilt Becomes Her

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I have been seeing a nutritionist/health coach for the past several months. I’m supposed to have an appointment with her today but I cancelled and… I’m filled with guilt.

She, the nutritionist has me doing SCD(specific carbohydrate diet). I’ve made some pretty significant gains in my health since starting the diet, including an increase in energy. I think of it this way, if I had a million steps I’d have to take in energy increases from where I started to get to a healthy energy level, I’ve taken about 100 since the start of the diet. I still have a long way to go but that’s a substantial increase, given I’ve only been going the opposite direction for the past few years.

It was wonderful to feel like I could move. So wonderful that I wanted to move more and more. So I did.

The feeling of freedom from being able to move my body when I have not been able to in so long, combined with a sense of panic caused by a recent health scare (too much to cover here but my naturopath thought there was a worsening in insulin resistance and was advocating for a medication that I do not want to take. False alarm but…) seems to have caused a relapse in some obsessive thoughts/behaviors related to old eating disorders and long story short… I did too much and I crashed hard.

This is not the end of the world, though admittedly it did feel that way. I just need to rest….a lot. So, I cancelled all of my appointments for the week. I’m feeling better. I could technically handle the appointment today but I don’t want to.

I’m going shopping with my sister this weekend. She needs clothes, so does my son. I’ve been looking forward to it and I want to make sure I have the energy to go. I haven’t been able to do something like this in near a year (I’ve done all of my shopping on line). Appointments take a lot out of me and I get so activated that I can’t sleep after.

I do believe I’m making the decision that is best for me right now but…I can’t shake the guilt. I should go to the appointment. I should be able to handle it. I should be a good little girl and not make a fuss or cause any inconvenience for anyone. *Sigh* Man, childhood programming is a bitch.