Living As All of Me

[HannahOne]

Dollyvee and SanMagic7, thank you for commenting and reading.

Dollyvee, I'm sorry you have dealt with health issues and not been understood by doctors and not gotten the right care. And sorry for how your family responded and didn't respond to your medical needs. Seems to be a theme! It sounds like MCAS, which my kid has. The doctors on the Dysautonomia International web site list know how to treat that, yet we went through YEARS of being told it was anxiety that made her skin flush, feel nauseated, hives, etc. I don't think I'm reacting to fillers, in my case I seem to metabolize medications differently, or react to the medication itself. Many antibiotics and sulfa drugs cause early Steven Johnson syndrome, all the psych drugs cause seizures or paradoxical reactions. If a drug has a bad side effect, I'll be the 1 or 5% of patients who gets that side effect. I think it's partly being a "fast metabolizer" so if someone needs 200mg of a drug to have an effect, I basically just need to lick the lid of the pill bottle to get that effect, LOL. Thank you for the support.

SanMagic7, I'm so sorry you too have had these kinds of experiences. Again a theme! But I'm glad to hear you found someone you can trust now. I hear what you're saying about the basic fault. I am unwinding that right now inside! Thank you of being with me in it and for the love. I am working on accepting and internalizing kindness and care and you've given me good opportunity to do that!

[HannahOne]

I started to write "I am working on ...." and then laughed maniacally because what I am "working on" is receiving kindness, care, or love. No need to WORK at that, kiddo. I can just be open to it. I am noticing my immediate response to care is to self-deprecate, push it away, duck and dodge it, or squirm, and seeing how open I can stay to it. The wonderful thing about this is that there is actually a lot of kindness and care coming my way! And that wasn't the case four months ago. A small miracle. I feel the urge to light a row of candles, one for each day the kindness and care keeps coming. But at this rate, I would have a massive bonfire shortly.

I am also noticing the feelings this brings up in me. Feelings of desperate sadness, wailing grief inside. Desperate sadness, because someone was nice to me? Wailing grief, because someone cares?

I look inside. Yes. Huh.

Sad, because.... these parts of me needed it back then and didn't get it. So little care. So little! Desperate because.... whatever I receive now can never be enough to make up for back then. Never enough! the parts chorus. And, I'm here now, and it's enough. Both are true. Somehow my acknowledging the "never enough back then" allows the "plenty now" to take deeper root.

I've been using this kind of "pendulation" in my daily life. Saying no to the horse lady, and all being quiet inside. Cleaning like mad before a guest, hearing the internal noise, complaining and fussing, and saying, "Yes being an adult is a lot of work!" and all the overworked scared parts sit back and relax. The sad, sinking feeling of standing at the fridge to pick out food and feeling hopeless, that's another little part who was so hungry: I will make you something.

Acknowledging and turning toward my troubling emotions more and more. It's not like I didn't know I "should" do this decades ago I just couldn't somehow do it. Simple acts of self-compassion. I guess it wasn't safe back then, what with still having to get further and further away from the past, survive, make a life. No time to feel. Make a life? Whatever that means, I think now... "make" a "life." What is my life, but the unfolding of experience? Now experience of past grief, now experience of present joy. Joy reverberates the pain, and vice versa.

Lately noticing a trigger for fawning, where I can't believe what's coming out of my mouth. The trigger is, not being believed. LOL. That's the trigger, the fear of not being believed leads another part to take over and start talking.... Whether my kid's school didn't believe something my kid did, or a doctor didn't believe their pain, or their therapist seems unsure about something I report (that believe me, I have documentation of!), it all triggers the past where I need the person to help me, so I give them more information, overshare?, or bury them in documents, LOL.... forgive me, kid's school, doctor, kid's therapist. That feeling of standing outside myself watching myself do this behavior.... I want to notice more the trigger before that fawn mode kicks in. If someone doesn't believe me, isn't sure.... I can ask them a question, and then wait. I can remember I don't need anyone to believe me. I'm no longer a runaway looking for a roof.

It's the best of times, it's the worst of times. TW illness. I think one of the medications is giving me vomiting and diarrhea. Fun times. It's intermittent, I'm fine for hours at a time, so it seemed random. I was pleased to see I had lost weight lately and my pants were a size too big. I've been wanting to lose 15 pounds that I gained over the pandemic. I was thinking it was all the working out I've been doing, then realizing, um, I think it's feeling so sick. Seeing the doctor tomorrow to rule out any other cause and for Zofran and something else to help. Or a med switch. Makes sense why I've been depleted the last few days! I wish I was quicker to catch on. Need to work more on noticing physical sensations and symptoms.

Tomorrow morning assuming I'm up to it I will do the wildlife rehab for four hours of training. I am unsure I want to do this but I want to find out. Then PT if I can, then doctor.

The seasons have changed, so must the clothes. Today I wore white barrel jeans rolled up at the hems, with rust colored ballet flats with a strap. Yeah! And a black tank top, with a checkered button down over it, and a necklace with a red string. I don't have my spring/summer wardrobe settled. Not sure what to wear. I can't tolerate heat at all now, the dysautonomia is wild. I like the white jeans and flats sitch, but in the heat, I need more options. Curious what I will land on. Sad not to be able to wear my partner's wool men's suit pants again till fall. Maybe I will snag a few of his ties.... heeheehee. That's for sure a part of me! Meanwhile I have most excellent flats in snakeskin, black with thick white rubber bottoms, and Vans. Sometimes you have to start with the shoe, and work bottom up. What will I be walking in today, and how do I want to feel doing it? Today I was walking on city sidewalks. Tomorrow, I'll be walking in animal poop and hopefully not my own. So it will be boots and a topper! boots and a sweatshirt. Change for PT into sneakers and leggings. Change for doctor into crop jeans and .... something. Hopefully a shower in there. Or two. I have a silk polka dot blouse I want to try, and it's not yet too hot for it. What does "silk blouse" say to the doctor? This is the one who curses around the AI, so it can say whatever it wants. I hope to spend a little time on my closet this week reconnecting with the current body changes, weather changes, vibe changes.

And deeply tired. Cried for a few hours today, good crying, driving down the road with the double yellow unfurling in front of me to "Walk Away Renee," "Grief is only Love," "It's my Life" with Bon Jovi, "Second Chance" by 38 special, and some Brandi Carlile, "Beginning to feel the years, and I'm going to be ok. As long as you're beside me along the way. Gonna make it through the night, and into morning light.... Yesterday is long ago, and far away...."

https://www.youtube.com/watch?v=5cKHzvb6_gA

[sanmagic7]

road therapy, hannah1 - i love it!  have done a lot of it in my time. driving was one place i could let anything/everything out.  so cathartic, cleansing, and joyful to just belt out a favorite song w/ no one listening.  oooh, joy.  i think i just recognized that.  yay!

yes, different clothes.  loved the outfit you picked out - very cute.  that's one thing i love about the seasons - new wardrobe.  keep going - sounds like you're doing what you need to do and it's helping.  love and hugs

[HannahOne]

SanMagic7, yeah, road therapy!:)

[dollyvee]

There's two great books by Ingrid Clayton called, Believing Me and Unfawning that you might be interested in HannahOne, and I often overshare for the need to be believed as well. As a young child with no protection, I think it's what I had to learn to do.

Thank you for that explanation. It's interesting to learn about the similarities and differences between peoples' reactions. Thank you for your understanding about health issues, and yes, I think it's MCAS. Whether or not a doctor will believe that without a high tryptase test is another story. I have had genetic testing/report via noorns and the symptoms line up. I have also deep dove into my genetics and have double mutations in genes where inflammation can lead to anxiety and/or depression. This is all new stuff however, and in the 80s no one had any idea. So, I was a picky eater or it was the laundry detergent that was making me itchy.

I hope you're able to find a little space for yourself to process all the things that come up bit by bit.

Sending you support,
dolly 

[SenseOrgan]

There's a character, I think in one of the classic mob movies, or a Tarantino. At one point he says:"Here's what's going to happen", followed by a detailed description. His whole demeanor and intonation oozes "even the thought of non compliance on your part equals instant death". I want a pinch of that for us. A pinch of that confidence and authority, and not even being able to fathom not being believed. Call it psychopathy if you will. I think this is needed to go against a childhood that was riddled with gaslighting, invalidation, denial, dismissal, ignoring, erasure, and so forth. I feel you HannahOne. I have a similar pattern running. Not being believed can trigger a boat load of unprocessed childhood experiences. Thousands of them. The emotional charge can flood me when I'm not heard or believed in the present. It's challenging to stay mindful and keep the adult online when this happens. The kids feel a strong impulse to make the person in front of me into the understanding parent that I'll never have. It's hard to resist the urge to seek external safety and to instead look inside for that, which is accompanied by all sorts of difficult feelings that the pattern attempts to keep at bay.

As for receiving kindness, that too is something I recognize. It still isn't coherent with my sense of self (self worth), which is what generates an impulse to wave it away in various ways. It takes mindfulness and effort for me to resist that. One thing that might help for a fawner is to see that we reject something that another person is offering us with sincerely kind intentions. From another angle, I think basic CBT kind of stuff actually applies here. The needle needs to be picked from the groove and land on another tune. Every single time. This has helped me to learn to receive compliments, at least on some level. I've found that the resistance to that slowly corrodes.

[HannahOne]

Dollyvee, thank you so much for mentioning these two books! Believing Me sounds like just what I need, I put them in my library list and will buy them if not in the library.

Yes no one knew about MCAS, POTS, EDS and the rest in the 80s My parents used to call my pain "growing pains." Um, no, thanks, my joints are dislocating. Sigh. Now we know, and we need to know more how to help. H1 and H2 blockers or chromalyn have helped my beloved with MCAS but everyone IS so different as you say. I am so sorry you've had to deal with this.

[HannahOne]

SO, thank you for reading and commenting. Your comment made me smile, "here's what's going to happen." Yah. That's what we need! "Now you're going to believe this." That's the energy I had with the doctor yesterday. I've been through this before, lady.... my symptoms didn't perfectly line up with her suspicion, but she ordered the test for MY suspicion. Let the labs speak!

I'm sorry you had these kinds of experiences as a kid. I have to say it should not have been that way, and, here we are, that is how it was for us. Thank you so much for sharing your experience, it's incredibly helpful to hear how others experience these things, and also to hear how you have come to see it and relate to it. More helpful than CBT. But I feel you, yes, I need to pick up the needle and change the groove. It makes me think of a therapist I once really worked well with, and I expressed one of my toxic beliefs, I think it was basically, "and I deserved that," and she shook her head side to side and said "no, no, nope" in such a way that she was lifting the needle and moving it, like we weren't going to stay in that groove for even one second, no, no, nope.

Or the inverse, I don't want to reject a kind person, or their kindness. That isn't kind!

[SenseOrgan]

Well, it's a little ironic to say "my pleasure" here, but it's great to share these thoughts and experiences. Better than CBT, for sure.

I'm actually familiar with MCAS, believe it or not. I can't open that can of worms right now, but I suggest we talk about it later on. Have a good one!

[HannahOne]

TW abuse, pain

I had a nightmare at 4 am and couldn't go back to sleep. So today is going to suck. That's my negative thought May today be a prediction error.

I dreamed my mother was in a. swarm of bees being stung. I went to help. Then I was being stung, I felt each sting and rising panic. I ran to my father oblivious in his lawn chair but my mother said to get away from him. So I was being stung by thousands of bees, and I thought I would die.

Two hours later I'm still full of adrenaline and I don't know what to do. I have to get up soon and I feel frozen still, my blood thick like oil, I was paralyzed for about an hour. Now I could reach to my computer. Writing has always helped me, language, words, some control, some communication, some making sense of nonsense, some order. Some poetry. Some words that can help carry the weight.

when I was working with the horses, I had them trot in a big circles around me. That's how we work. And we go walk, trot, walk, trot, canter, trot and we're working on bending the body around the circle so he can be in balance. We're working on rhythm, 1 2 1 2. We're working on being together, of the same mind. I'm thinking trot, you're going to trot. I'm thinking canter, now you....I see you're thinking walk, in a minute we will walk. We're working on gratitude both ways. Thanks for trotting. Thanks for listening. Thanks for asking. Are you ready to trot? I wait till I see an ear flick, then ask, Trot now. Or insist, Now trot. Go. Move. Move now.

I had a whip and a rope. A whip to keep him from charging into me, a rope to keep him from running away. And when he flipped out, when he saw a bird or his leg hurt  or he had a flashback to some other person with a whip, he would buck and kick and go bat *crazy.... he would go into fight or flight. And I had to rope to keep him from getting away (flight), and the whip to keep him from charging in to me (fight).

The temptation is to change what you're doing. He changed, so I need to change, I need to do something and stop this. But that's the worst thing I could do because then I become the threatening object. He needs me to stay the same.

Sure I'm scared he's going to break the rope and get away, or hit the wall and hurt himself, or hurt me like he hurt someone else. But I have to put my fear into the back of my mind. I'm aware of the wheelbarrow, the wall, and myself. But my focus is staing the same. I don't start saying things I've never said to him before. I don't say "Oh my God stop it!" or yell his name or scream at him.

I say the same things I always say. "Click click." That means "move." "Go forward." I may say it a little more softly to get his attention, or I may get a little bigger to match his energy. But I stay the same and I give him a rhythm, 1 2 1 2 1 2, that's what he needs to come back into the present. I put a song on in my mind, the same song I always have in my mind with him. He'll hear it, and come back.

I might loop the rope twice, get a little closer. Or I might let the rope out two loops, to give him a little more space so the rope doesn't break. I might feel the whip in my hand and move it two inches so his eye sees it. But I don't start waving my hands, or cracking the whip, or crank down on the rope. I stay the same.

Sometimes what works is to say, "Wow, nice move, nice buck. Very fancy." Go with it for a minute. He mneeds to be allowed to have feelings. He's not a machine. He needs to express some energy. That's what actually makes it safe.

I have to trust him that he will not get away, or charge me. Even if I'm thinking he might, even if he has in the past, if I don't trust him he will feel it and that's not safe. What makes him feel safe is knowing that I am trusthing him, even when in the back of my mind Im managing the risks, because I'm feeling some fear. It's natural to feel fear when there's something wild going on, that's ok. I just can't become something else in those moments, I hve to stay the same.

That's how he'll know im with him, and that's what will bring about the change for him and make it a different experience for him than he's had in the past, when people cranked down the rope, tied him up too tight so he couldn't lash out, or cracked the qwhip or beat him when he was scared, made him run until he was covered in foam to "get it out of his system."

I am trying to do this for myself. I am trying to stay the same, while parts of me are kicking off, bucking, careening around with nightmares and fears and flashbacks.

Part of "staying the same" is routine. So yesterday I did the routine. I went to PT. I showed up at the wildlife rehab because it was time to show up at the wildlife rehab. I did not want to go. I did not want to get out of bed. I was this close to calling out. But it was my first day LOL. Come one HannahOne, CLICK CLICK, move! move, move, move.

So I went. Parts of me loved it. The task-oriented part that likes to get in and do things, focus on a routine, be busy and check things off. The part that is deeply connected with animals. The part that is very interested in animal psychology, learning something "clinical," gaining a more objective eye to balance out my very creative, subjective one. The younger parts that wanted to be a vet, until I go to college and the dissection and the traumatic dissociation was too much for me. Three weeks out of the trauma was not enough to pull off pre-med studies, LOL. Oh well.

The part of me that doesn't like the rehab center is the part that just doesn't want to get out of bed in the morning, is too tired, too sad, too hopeless, doesn't want to deal with any challenges and can't imagine ANY of the above being the least bit interesting.

And I also have a part that's a little worried/disgusted. A lot of the work is just....gross. I'm ok with gross, I have pet rats, LOL. Cleaning squirrel cages, anyone? It's not different from cleaning my pet rat cages really, but it's a LOT of squirrel cages in a row! Portioning out frozen dead mice into cups for the raptors? I mean, it's ok. But after four straight hours, I started to feel a little icked out as I realized that though they keep raccoon blankets separate from possum blankets and though there are "meat" cutting boards and "veg" cutting boards and though I changed my gloves and washed my hands many times, everything was surely cross-contaminated. I have a fear of getting sick, particularly the last decade when I knew something was wrong with my lungs, got very sick from flu and never quite recovered, then the risk of COVID which with my lungs I knew was going to be no bueno. The medication I'm on is not making me immune compromised but I'm already a little compromised, I get every bug that passes by. They say no one has gotten sick there. All the avians are in the "quack shack." I'm probably more at risk from the humans who come in sick.

I also know that I will habituate. Being a mammal, in a few weeks I probably won't think twice about getting sick and that ick factor will go away. I've been in a rather hermetically sealed bubble for years and that's part of what I'm trying to break out of, even though it might kill me. LOL. It won't kill you, HannahOne! We will see.

What I like about it is that it's real work, it makes time move, I'm helping animals, it doesn't use my intellect so I don't get so tangled up in fear, and I'm with other people. I like the people so far. We don't get to speak, lest the animals habituate to our speech, so that may be why I like them all so far. LOL. I'm sure at some point I'll have opportunity to practice my social skills and work through feeling offended or hurt about something or other.  Humans gonna human.

Feeding the squirrels is a hilarious trip. You grasp the squirrel firmly. Good luck with that! You place it into a pillowcase and tie the pillowcase in a knot so it can't escape. Zero out the scale, place bundle onto scale, note weight. Untie the pillowcase---careful! Grasp rapidly emerging squirrel. Peel squirrel's nails off your shirt. Twice. Place squirrel firmly on tabletop surface, press down lightly to ensure adherence. Load syringe with formula, approach squirrel face with syringe. Do not coo, "Hello, adorable beast!" Do not sing "The Monster Mash." No speaking! 8 ml, 7 ml, 6 ml. My experience as the rehabber is very clinical, I have to keep "Hello, adorable!" in the back of my mind and in the front of my mind, "8ml, 7 ml." The squirrel's experience is "MILKY MILKY MILKY!" At least that's what it looks like, he's so desperate, grabbing the syringe as if to stimulate his mother's milk flow, frantic. Adorable.

Meanwhile on the table beside you are three more squirming pillowcases that another volunteer has placed while they're cleaning the cage. You have to keep SQ-2543 straight from SQ 2544. You can't call him Hugo. Or George. Make sure you're documenting accurately "SQ-2543, consumed 7 ml and seemed to want more." No, "grasped at syringe, suggesting continued hunger." Sigh. How to be clinical about this adorable beast? Wait, which one is this? SQ-2546? Uh oh. No, this one has ears painted pink. That one is SQ-2544. This one is SQ-2543. Right? Yes. Ok, back into the cage you go. Pillowcase over the door, no peeking!

Not one SQ seems in danger of rescue myopathy. Despite our attempts NOT to habituate them, when I open the next pillowcase, the squirrel clearly knows what's up and grabs the syringe from my hand. And I can't say, "What a highly intelligent creature you are!" I put that in the back of my mind and silently note, "SQ-2546, 9 ml."

Is this what it's like to be a therapist? You're clinically noting which SQ you're working with, and thinking, "9ml", while the client is thinking "MILKY MILKY MILKY!!"

The best therapists are the ones who can stay the same. Whether I"m bucking or kicking or looking like I'm going to charge, they just say "click click" and give me something to tune in to.

At the moment I'm having to be my own therapist. I can't be objective about myself by definition, I can barely be clinical. But I can keep track of the milliliters, and try to stay the same. Stay the same for the bucking, running parts, the parts that want to charge, the parts that stand with frozen eye. Stay the same. Move. Click click.

And I can give the milky. I can give myself what I need. Miley Cyrus, anyone? I can buy myself flowers, write my name in the sand.... LOL. Ultimately I don't think I can give myself what I need. Humans gonna human, but humans need other humans. We are tribal, pack animals. Like the pile of squirrels in cage #4, we don't do as well on our own. The lone squirrel is pale and has lost much of his fur. He's losing weight. I'm concerned he's a goner. It's part of rehab. Not everyone makes it. He needs his tribe. Tomorrow he's going to be introduced to a new arrival coming out of quarantine to see if they can be cagemates during their recovery. I'm grateful for all my cagemates here. I have to take care of myself, and, I can't give myself everything I need. Humans are difficult, especially talking humans, LOL. And, we humans need each other. 

[TheBigBlue]

Good morning, HannahOne,

that sounds like a really intense morning - the nightmare, the adrenaline, and that frozen feeling.

What stood out to me is how you're staying the same for yourself in it - the "click click," the rhythm, even when parts are kicking off. That takes a lot.

And reading your routine - the showing up, the movement - actually calmed me down. Something about that steady "keep going" energy landed.

I'm really glad you shared this. 💛

[sanmagic7]

hannah1, i think giving care and concern to others, be they animals or humans, is about as good as it gets.  so very glad for you and how you can translate the 'click click' for the animal into something you need for yourself.  very creative thinking, which is my favorite type of therapy. 

very sorry about the nightmare, tho.  i hate those.  sending love and a hug filled with a nightmare-sweeping broom.

[NarcKiddo]

Cagemates. I kind of like that. Very happy to be your cagemate, HannahOne.

[dollyvee]

The dream dictionary I use says that:

to dream that you are stung by a bee indicates that you have been wronged. Maybe you were hurt by some stinging remark. Dreaming that you are being chased by bees means that you are trying to avoid a negative or painful situation.

Yes, I love cromolyn and had the most amazing reaction when I started taking it. Someone described it like being in the backseat of the car while you were a kid on summer vacation, and I really related to that. I also wonder about HEDs, or Ehler's Danlos, as I've had a lot of popping start when I came off my mast cell stabilizers, but I don't think I've had the usual symptoms of those unless they've been masked by muscle tightness over the years. I'm sure you already know well about the connection between MCAS and HEDs, POTs, EDS. It's also interesting on the psychosomatic connection that MCAS can flare in relation to stress. So, to me, I think it's tough to separate the distinction for some people between it is just all in my head, or emotions, and the actual underlying condition that exists.

SO - it's interesting that high levels of histamine in the body can also cause disturbed sleep as "histamine dumps" occur during the night.

[HannahOne]

TheBigBlue, thank you for reading and commenting. I read your comment that same day. I have been too tired to respond but I really appreciated it. I am trying to stay the same, and keep going. You got it