Having The Spoons

The following is a post i wrote in February of this year. It is re-edited.

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Another post. This is a public post—and i’ve decided to turn this into a note. Tonight, i am re-editing it for more clarity. And to include more posting about what my situation is like, so everyone understands, and maybe this time i can get some real help to rise up and finally be able to move to a neighborhood where i will be happy again.
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At the end, are two articles that further explain where i am at at this point in time. Please read this, then read the articles.
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Inspired by what a friend of mine posted earlier.
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Can you imagine how rough it must be when one is in constant mental and emotional pain that just won’t stop and you can’t escape it. And this pain has been with you your whole life, sprouting from childhood and growing into full bloom to where it has eroded your physical health, and has taken all of your dreams, goals, hopes, happiness and joy right along with it. There are many kinds of pain.
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These are my kinds of pain.
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Some kinds of pain cannot be healed—like scars, a new traumatic event can cause that scar to reopen, as a fresh new wound.
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My pain includes:
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–26 long years of being bullied by various neighbors that sill goes on now—on top of growing up in a family who treated me as i was less-than, wrong, and inferior, damaged goods–then add to this mix:
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–The intense heartbreak i felt when a sister in law who i thought was my friend, suddenly without warning, turned on me and refused to speak to me or send me anymore birthday and Christmas cards, a full six months after my mom moved to Idaho in 1996, because she didn’t want to “take over” for my mom and deal with having to help me, because of my “mental issues”—
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–A police beat coordinator who came alongside me like the kind brother i never had, from 1996 through 1999, suddenly turning on me because he went to the auto shop and believed the ugly lies the auto shop bullies told him about me, and he failed to see why i didn’t move to an apartment that he had gotten me set up to move to, even though i knew the people in front were already going to give me a problem because they were already complaining to the owner that my being there was going to cause them problems “because of my autism”—
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–Then same police officer beat coordinator went and bad mouthed me to the entire police department, and even told all of the dispatchers to stop taking my calls about the hot rods, loud music and bullies. I cried non stop for a whole week when he shut the door on our friendship.
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–Having a next door neighbor from 1994 through 2001, who called herself a Born Again Southern Baptist Christian, but who would snub me, criticise me for liking heavy metal and grunge music, and then she would call the police on me for literally every single thing i did, no matter how small and trivial it was. She had no compassion for me or my plight, and refused to understand what was going on with me. Come to find out, she was friends with some of the auto shop bullies. And she was also friends with the mean girls who had been the start of my 26 years long battle with neighborhood bullies.
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–Another failed friendship with another man who lived in the neighborhood who befriended me for six years from Feb. 2006 through March 2012, when he finally turned against me, going so far as to write me horribly mean emails where he said denegrating things about me—and he came onto my Facebook blog page and YouTube channel and tried to get me in trouble with both platforms. I had to take down several videos, and delete that Facebook page. I still have nightmares about how mean he turned, and how when he turned mean, he actually used my fears to frighten me.
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The first sign of my eroding health was the weight gain. I began to gain weight in high school but because we lived in the country and i took lots of hikes, it was never a real issue. When i moved to town to my first apartment, from 1987 through 1991, i was still happy, because there, i had very nice neighbors. While i lived there, i continued to take walks. I even learned how to drive and got my drivers license and my grandmother’s car while i lived there. (I got my driver’s license and car in May of 1990.) I began gaining the weight hand over fist when i was forced, due to economic reasons to move to this mean bully monster neighborhood in May of 1991, especially after the mean bully problems started with the two Mean Girls next door to me. My first ten months living here in the cottage next door to me, continued to be happy, because i now drove, and i still went to visit my nice neighbors at my first away from home apartment. I was happy until the Mean Girls happened……
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Then, next, came the lymphedema. That came on in 2005, when, because i was having another spell of mean neighbor drama, i developed a respiratory illness/flu-like illness, had to stop sleeping in my bedroom as a result of that, and began having to sleep sitting up with my legs down on my broken down living room sofa. Laying down became a problem because my lungs would fill up, and i would choke. I am still like this. I still to this day, cannot sleep laying down in a normal bed.
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Here is the rest of my comment, as posted on my friend’s post.
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When the lymphedema developed, i went through several years of hell trying to get a local lymphedema clinic to give me physical therapy and modified wrappings—so my lymphedema has gotten out of control—and i am now greatly disfigured from my waist down. I have slowly shut down. And i have gained even more weight that i can’t lose because—stress. Stress that just doesn’t stop. Because until i finally have a way to move somewhere that i know will be sensory safe for me, i am trapped living here. Literally trapped.
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Being Autistic, i simply do not have the filters to be able to ignore, forget, or stop dwelling on the things that are triggers and sensory issues. This is disabling, on so many levels. And depending on what it is, or the severity of the trigger—it can take me days or weeks or even longer to get back to a semblance of what is to me, my normalcy. In other words, it takes time for me to get over things. Today, i am in physical pain, in addition to the 24/7 mental and emotional pain i still experience. My physical pain now involves my shoulders, arms, floating rib area, middle and lower back, then goes through my hips, thighs, and to my knees, then my lower legs and feet. I am in pain when:
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1) if i sit certain ways or on certain types of chairs. Even my lift chair and computer chairs, will hurt my legs and back after a while.
2) If i stand for more than five minutes, or walk more than short-short distances, like to the bathroom, bedroom, and kitchen in my house.
3) if i use my arms certain ways, my thumbs will now lock up on me, and i will often experience a sharp kink in my floating rib areas on my sides.
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I have lymphedema on both legs that was improperly treated, and it has gotten out of control as a result. I stopped taking walks after i moved here to Mean Bully Monster Street too, because of my fear of running into the bullies on my walk. Yes, that did happen. Alot when i was walking. And they would yell shrilly and cat call at me, calling me uglynames and making loud shrill animal noises at me.
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The untreated lymphedema finally caused a lump to form on my inner left thigh, a heavy rock-hard lump that is now the size of one and a half basketballs, and it weighs heavily on my left knee, adding to my difficulty with walking. I had to stop driving in 2012 because of the lymphedema lump, and because when my friend of six years turned on me, the emotional trauma i went through, caused me to actually lose the ability to handle driving.
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I suffered even more PTSD on top of the PTSD i already have from my childhood, because after i stopped driving and being able to do for myself, i needed in home care, and was unlucky enough to get a string of 10 abusive caregivers—-three of them were repeats, meaning i had all three of them twice. In 2014 i finally lucked out, and found Connie, but after 15 months, we ended up having to take a one month break because i was still not over my PTSD from those other horrible caregivers, plus the horrible end of my six year friendship with that man who lived next door to me before the abusive caregivers. So, during my first year with Connie, we both put up tall walls, and then, boom, we had to take a break. During that one month break, i suffered through two more abusive caregivers—-and then Connie came back—-and she continued to be my caregiver until March of this year.. We became best friends.
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I am still not over my childhood. I still have nightmares about so many things i went through with various family members. I am still not over my failed friendships with the police officer, and with that man who lived here for six years. I am still not over all of the awful caregiver experiences, including the two who came along when Connie and i took that one month break. It’s because i have deep abandonment and trust issues. My fear of being left all alone to fend for myself is always on my mind 24/7. Growing up being told i would never be able to do this and that, that i was ugly, fat, and had a ginormous ugly nose, that i would never be anything in life, and that i was less than, has done a real number on my sense of self worth—today, i still struggle greatly with my self esteem and learning to love myself and be good to myself.
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I used to have two nice sisters. Now it is down to one. The one nice sister started writing me emails telling me how my life was going to be so different when my mom passes away, then in 2016, she wrote me a letter where she told me right out, that when my mom passes away, i am going to be literally ALL ON MY OWN. She said she will not email or call me. I will be cut off from all of my family then—her words. I have actually shut down a lot in the past two years. The more the street noise and bullies stress me out, the more i stress-binge eat, the more i sleep at odd hours, the more i DON’T sleep, and the more afraid i become to venture out and go where people are.
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I can’t handle the weird stares i get, and the faces that are made at me. I don’t like the cat calls and animal noises that only us fat people seem to get, either. I have become afraid to take showers too, because of how hard it is to get in and out of the tub shower, how hard it is when the cold shower curtain keeps rubbing up against me, and how it is hard to keep the temperature from going too hot or too cold. I have become afraid of breaking a knee in the shower.
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I have become afraid of being alone for long periods of time. Especially if there is thunder and lightning, lots of heavy rain, wind and the sky and my whole house is dark, even in the daytime because of the dark foreboding storm outside. Especially if i break out in bright red hives all over after a sick stomach spell.
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I am afraid i will fall.
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I feel a constant sense of dread and anxiety that i will keep on losing friends and caregivers. It is hard for me to believe in myself when people keep giving up on me. I simply don’t have a good track record of being able to keep long lasting friendships, because i get too clingy; then i need alot of reassurance, then when people are having a bad day or don’t feel well, i take those moods on as my own, and blame myself for people having bad days and not feeling well. Then i get panic attacks where i literally am blowing up their phone and email, because of my fear that they too will leave me alone again.
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I am doing the best i can with the spoons i have to work with at any given time, and many days, i have few to zero spoons in my arsenal to work with.
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Being autistic, my brain processes things in either a happy safe zone, or panic zone, and when i hit panic zone, i have more and more severe meltdowns.
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Many days, i am hyper vigilant and hyper sensitive. Because i literally fear and worry all of the time—-all the time. In February, on Weds. the 21st, i lost my hearing in both of my ears too, and had to go to an urgent care. They didn’t get all of the wax buildup in my ears out, so my hearing was still quite muffled, but the next day i saw my primary care doctor, and they did thorough ear lavages and cleaned out ALL of the wax buildup. It was traumatic for me to lose my hearing like that, even though it was temporary—on top of the independence i have already lost over these past 6 years. Because i enjoy my music and watching TV so much, and being able to talk to people. I suddenly felt isolated and cut completely off. (It was 6 years ago, when i stopped driving because of that man, and my leg lump.)
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And then that Sunday, i broke out in hives and had one of my bad sick stomach spells.
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Here is a post i just wrote on 2/26/18, on my Facebook wall.
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“I mean it. There is nothing more frightening than being alone and having hives suddenly break out for no apparent reason.
Like yesterday, my Sunday, on one of my Alone days.
I am not just alone, i am LONELY.
I fervently wish i could live where i can be
truly accepted and loved
by a close community of friends who really “GET” me.
People who truly get that i am Autistic,
and that my can’t’s are actually true can’ts.
People who will always be here,
and who i can know will not ever give up on me
and shut yet another door on me.
People who will come around when my caregivers can’t be here.
I mean it. I don’t think i can take this much longer.
Being alone when i choose to be is one thing.
Being alone when i don’t choose to be,
is worse than being locked in a pitch black room
with no music, no TV, no one to talk to.
I want to move, get out of here today.
God in Heaven, please hear these cries.
Soften the hearts of friends and family
and open the doors for me to have a life
where i can once again look forward
to waking up to each day.
Because now, i don’t look forward to waking up.
I feel like my life has become one huge hopeless dead end.
I wish i had someone to talk to right now.
Please. I can’t do this lonely being boxed in anymore
in this hellhole of loud demonic hot rods and hatred from the bullies.
Please understand. Please. PLEASE HELP GET ME OUT OF HERE, PLEASE!!!!! I AM SUFFOCATING!!!!!!!”
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Here are two articles i want you all to read, please. These talk about what i just wrote about here.
Thank you.
My Go Fund Me page. Please share widely, and if you are able to, please donate. https://www.gofundme.com/help-me-move-from-the-bullies
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