chronic illness

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.

Ring Theory – comfort in, dump out

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Once upon a time, a long, long time ago… Not really but I can’t remember exactly when so… I heard of this thing called ring theory. I can’t remember how or where, I may have read about it or watched something that was talking about it. I don’t know. What I do know is that when I heard about it, I thought, yes!!!! This is exactly what I’ve been trying to explain to those around me, all summed up in a neat and tidy, easily understandable package.

I’m just gonna quote this article here, rather then try and explain it myself.

“Susan Silk, a clinical psychologist, and her friend Barry Goldman came up with the concept of Ring Theory, after Susan’s experience with breast cancer. Susan noticed that during her journey with breast cancer, people close to her (as well as, complete strangers), though often well-intentioned, would vent or in an attempt to “fix her situation” by giving their opinions to her. However, what Susan needed most when she was suffering was not their emotions about her experience, but rather their comfort. Hence, the idea of Ring Theory was born. Ring Theory is essentially the idea that a person experiencing trauma and grief needs a specific kind of support during their time of crisis….

The rules of Ring Theory are pretty simple and can be explained in four words, “Comfort In. Dump Out.” Here is how it works. Whoever is in the centermost of the rings gets to whine, complain, cry and vent as much as they want and need to. As Silk states, “That’s the one payoff for being in the center ring.”

The people in the other rings can also express their feelings and concerns. However, the one distinction is with whom they can process those emotions. That is where the concept of “dumping out”, comes into play. The people surrounding the person in the innermost circle express their negative feelings and anxieties only to people in the larger rings. It’s not that you are not allowed to grieve or feel, it is just that venting about your pain to someone who is already feeling their pain deeply is not helpful to you or them.”

You would think that this would be common sense… Or at least I would think that… But apparently it is not. Living with chronic illness, it’s been a common experience for me, to have loved ones vent their fears and the things that suck, basically, about my having this illness, on me. Like WTF? Yes, I understand how my illness affects your life and that that is hard for you but hello… Do you not get how much harder this is for me. I’m the one who has to live with this illness. It feels completely unfair and inappropriate. Like I an being asked to hold others grief while simultaneously trying to process mine. Anyway you go about it, the message is clear. I am a problem, a burden, ruining other people’s lives.

Currently, I’m going through something that I’m not yet ready to talk about publicly. I’ll be fine but I’m in a constant state of stress… confusion, fear, grief, anxiety…trauma. I have been judged, shamed, yelled and screamed at… abandoned, by those who are supposed to love me. Again, I understand the affect on your life but… It isn’t ok to expect me to be able to hold it while I’m processing my own trauma.

I’m basically a walking meltdown at the moment. My tolerance level is beyond miniscule.

*Sigh* Try and remember, if you care about someone, and want to prevent traumatizing then further… comfort in, dump out. Comfort in. Dump out.

“That” pattern

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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.

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.

Honestly

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Is it just me, or has anyone else’s head felt like it was going to implode…or maybe it’s explode, I’m not sure… At any moment, lately.

I can not seem to stop ruminating…about… EVERYTHING.

I think I NEED to write.

I was thinking about my old blog earlier. I received a lot of big reactions there. A lot of hate but also a lot of love…a lot of people saying that I was helping them. I didn’t understand it at the time but now, I think it was because I was so honest. I think in order for this blog too be truly helpful for myself and (hopefully) others, it may need to be that honest.

I’m not sure that I’m to the task. I guess we shall see …