chronic fatigue syndrome

Baby Beluga

~ gypsy116toast2001 ~ Leave a comment

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.

Halloween poisoning

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It’s Halloween and I’m sitting at my sister’s house, alone, trying not to feel too depressed.

My child. My partner. My sister and nieces… Are all out trick or treating without me. I went briefly but I’m too sick to continue.

It’s hard when illness prevents you from doing things with those that you love. Halloween is particularly hard for me.

Instead of wallowing in self pity, I think I’ll talk to you all.

So, anyway…I poisoned myself today. No, I didn’t like drink some Drano or take a bottle of aspirin or even eat some food that had gone bad or any contaminated Halloween candy. What I did do though, was put on some deodorant.

I use a non toxic deodorant, which I had accidentally left downstairs. I, being upstairs and thinking that my mom had switched to a non toxic one too, used hers. I didn’t have the energy to go back down to the basement and I didn’t want to be smelly. I may not be able to participate in Halloween the way that I would like but I was still going to be around people.

Anyway, definitely not non toxic. Toxic. Very, very toxic.

Immediately my head started to pound and my stomach turn and I wanted nothing more than to remove this wretched substance from skin. I felt the little energy that I had draining away. It would not come off. I had to get back in the shower and I could still faintly smell it.

My first thought was “why the fuck is this in my house? Everyone knows how sick I am and how fucking sensitive I am”. Immediately followed by “wait, no, why is this even in the world?”

I recently watched a video about Mast Cell Activation Syndrome (MCAS), where they used the metaphor of a canary in a coal mine. The world’s most sensitive people are dropping like flies.

If toxins are affecting those of us living with chronic illness, they are affecting the rest of you too, whether you realize it or not. We are the dead canaries. It’s time to run folks.

Awhile back, I sent some links to my mom for some less toxic hair sprays. Hers sends me running for the bathroom, violently dry heaving. She was not receptive. I was talking to my sister about it and she said something along the lines of it being a lot to expect of her to switch, given what our mom does for a living, which is hair. She’s a beautician. Hair spray is her life.

At the time, I agreed. It is a lot to ask. The more I think though, hmm, fuck that.

Changing to healthier products is exactly what we should be asking of the people who style hair for a living. They use more product than anyone. They influence what the public purchases. Therefore, they have the most responsibility to use ethical products. This goes for any industry.

Period. The end.

Between a Rock and a Hard Place

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What do you do when you are stuck? When you are, as the proverbia expression goes, between a rock and a hard place?

Maybe it’s more of a chicken and egg thing? I don’t know. If our former decisions cause our current reality but our decisions have been made of wounds that can’t heal without a new reality, what then? How do we change?

If you are so sick that you can’t heal without help but the only help available to you is also harmful to you, what do you do?

If healing requires being in a safe environment, free from trauma but you aren’t physically capable of living on your own until you heal and the environment you are currently in and the only other option you can see are filled with trauma, what then?

I do not want this blog to be a negative space and I appologize for it being so thus far. I would like this to be a place of hope but I’m really struggling right now. This space is currently a reflection of that.

I’m not meaning to come across as hopeless because I’m truth I’m not. I have faith and hope but the truth also holds a lot of darkness. I don’t believe we are served by trying to stay only in the light when there are shadows that are need of exploration. I think it’s necessary to explore these shadows publicly. How else do we create awareness? How else do create change?

Please bare with me while I struggle.

Unhappy Halloween

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I’ve made the final decision. I will not be dressing up for Halloween this year. I’m just too sick. It isn’t possible.

This is, of course, something that I already knew but I didn’t want to accept it.

I’m hopeful that because now we know what we’re working with, symptoms will be under control by next year.

I’m hopeful that the hematologist will be able to give me an official medical diagnosis of MCAS.

I’m hopeful that this will mean that I will be taken at least somewhat more seriously.

I am hopeful but for now this really sucks. Anyone who knows me knows how much I love Halloween. You may or may not know that I wasn’t aloud to celebrate it as a child for “religious” reasons and that that makes it all the more important to me now.

*sigh*

Now to figure out how I’m going to manage taking my son trick or treating….

I need a wheelchair.

Do I wish I had cancer, of course not, but….

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I live with my parents out of necessity.

I moved in with them before the onset of my physical illness for reasons that I’m not going to get into in this post.

I’m treated like a spoiled brat for needing the help that I need (I’m not going to get into those specifics here either) and not being able to help in the ways thay I am not.

I, of course, internalized this. While I know this isn’t true, my spoiled bratness, I nevertheless gaslight myself constantly (Maybe I don’t need help with that. I can do it, I’m just (insert any number of negative and untrue things), which leads to me overdoing and making myself sicker, thus needing more help, getting more negative feedback and gaslighting myself some more….

Sigh

I read a book recently, How to Be sick: A Buddist-Inspired Guide for the Chronically Ill and Their Caregivers by Toni Bernhard. I’m not going to give a full review of the book here, I found some things problematic but it was worth the read (if you read it, let me know what you think). What really struck me was the amount of support she received from her husband (also unsurprisingly, she received much better care and much more support from her medical team than I could ever dream of. Being that she is not a poor woman with a history of psychiatric issues but instead a wealthy white woman with a career in academia, she was actually taken seriously both when she became and continued to be sick). Toni’s husband, of course has had struggles with the change in his life due to his wife’s illness but it appears that overall he does not blame her, he takes on the extra responsibilities that are necessary and… He does things to try and make her existence more liveable (like not just cook for her but make her delicious meals for dinner every night) because he gets that however hard this is for him, it doesn’t compare to how hard it is for her. Reading this, I felt both hopeful and so extremely sad. It fills my heart to know that there are people who do try and understand and that there are people with chronic illness that are not living my experience but… I know that it’s privilege and most of us do not have that privilege.

I’m gonna let you in on a little secret (or maybe it’s not a secret, maybe you’ve heard this before but it feels like a shameful secret), many people who are living with chronic illness, at some point or another have had the thought/feeling that they wish that they had cancer instead of their specific illness, myself included. Do I actually wish that I have cancer? Fuck no. I don’t think anyone really does but the feeling/thoughts come up none the less. Some people reason that with cancer, there is treatment. You get treatment and you either get better or you die and that seems better than living in constant misery for the rest of their lives. That’s valid, though I don’t subscribe to that reasoning myself. I know that some people do recover and I have hope that I will. Should I not then I believe that this is my path and I would have to come to terms with that at some point.

My reason (and others I’ve spoken to/read about) for feeling this is that people take cancer seriously. They treat people with cancer like they are very sick and many offer help. There are organizations that offer free help to cancer patients, things like cleaning and grocery shopping. There should be. Don’t get me wrong, I am glad these services are available and if anything wish there were more but… why aren’t these same types of services available to those of us with debilitating chronic illnesses?

Many of us have no support. No one really even believes us. As far as I know there are no services to help us (if I’m wrong, please let me know), but I, and many others are unable to do these things for ourselves.

I was really sick before I moved out of the mold. When I moved out, as happens when you body starts to detox, I got sicker. Then I got even sicker when I actively started trying to detox. Then I got covid and the amount my illness has increased is indescribable. I was unable to do things like cook and clean when I was sick initially, now….sigh.

I’m lucky that I have support but I get very little help and a whole lot of shame and guilt from them. I guess all I’m saying is that there are a lot of people like me. We need you to listen to us and believe us. If you are able we need your support. We need help.

Here I go, I’m people pleasing again…

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Last night I went to the ER.

I’ve been having chest pain since covid, it got worse with a few accompanying symptoms that made me think it would be best to get checked. I’m fine. I don’t want to talk about that now.

What I do want to talk about is trauma. No, not really, more just the impact.

My son woke up when I was getting ready to leave in the ambulance. He clung to me and cried. He didn’t want me to and was obviously scared. I hugged him and told him that I was ok but I don’t feel very well and the doctor needed to look at me but if be back soon. He cried. He clung. I had a hard time letting him go. I think having to pry him off of me and give him to my mom while he was in so much distress hurt my chest more then the pain I was having.

In the ambulance the EMT asked about my son… His name, age, if he’s my only child…. And then he said “he sure is spoiled isn’t he”.

I was taken completely off guard but it felt like a kick to the chest. I wanted to say, “no, he’s not. He’s three and was woken in the middle of the night to his mom leaving in an ambulance. He’s scared and rightfully so you. Have a little compassion, asshole”.

Do you know how I actually responded? A polite laugh, suggesting that he was right, my son is spoiled.

What does that have to do with trauma? My relationships, starting at birth have taught me that it’s best to be polite when confronted with negativity. It’s how you stay safe.

There have been times I’m my life where I have had other reactions, some also from trauma and some more authentic but right now … I have become so conditioned to be in fear that I sold my son out.

Fuck that. The more I become aware of just how often I fawn, the more motivated I become to heal. For myself. For my son. For everyone.

The Impossible Task of Living Whilst Sick

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I made it out to the garden today. I was able to tolerate walking around, checking on the plants for about five minutes.
This is huge. I have not been outside since I came down with covid over two weeks ago . I rarely watch TV anymore but I’ve been doing nothing but laying on the couch watching movies. I haven’t even been well enough to read.
I was watching Titanic the other day. I don’t think I’ve ever watched that movie without crying. The love story gets to me. I am a hopeless romantic whether I like to admit it or not. I also find it hard to separate myself from the tragedy of it all through time. How terrifying it must have been to have really been there. The chaos and the uncertainty. The way such things bring out the best and the worst in people and how I’m not sure which breaks my heart more…both, I suppose, in different ways.
Though I’ve seen it many times and not in many years, I found myself a huddled mess of tears and snot, sobbing with an ache in my chest usually reserved for tragedies of my own making.
This viewing filled me with the understanding of the beauty of life and the gift that it is, tragedy and all. Simultaneously, all of the grief of my life threatened to drown me.
The truth is that I was already incredibly sick before my son contracted covid and I did what most moms do…cared for him, knowing it was going to take me down much harder than it did him. The truth is, I’ve been mostly bedridden since my trip to the ER when I attempted to go camping in July. While my blood tests are showing evidence of healing that is taking place within my body, my body is yet to show any signs of improvement. Quite the opposite in fact.
Chronic illness is complicated. I can be filled with awe and gratitude for my life and the wonderful things in it while feeling tremendous guilt that I am wasting it. I am not able to be the mom and partner that I could be if I were not ill. There are so many ways in which I have to compromise myself and my values because of a body that will not cooperate no matter how hard I will it to. Though I know better, it is hard not to feel that I am too blame.
I’m living with a lot of shame.
I do believe that I am healing. Now if I could just figure out how to live while sick.