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It’s been a while. Depression sucks. I feel like I’m living with narcississ/around them daily. Always so demanding, having to walk on egg shells, everything is their way or it’s not good enough. My dad calls constantly and with his dementia he leaves me nasty voicemails if I don’t answer the second he calls. My getting my daughter breakfast and on the bus isn’t anywhere near as important as him swearing at me is first thing in the morning because he didn’t take his medication on time and is having a fit about something. My mom guilt trips me and has to check on me even if I’m not well she has to call every half hour to make sure I’m okay. I can’t rest because people will not pitch in and take care of anything. I have to organize everything and when I ask for help there’s some excuse as to why they can’t mostly because they are too busy and can’t be bothered. I’m the one people call to run and jump because every day SOMETHING is an emergency for someone. I just don’t want to wake up in the mornings anymore because I’m so triggered by everyone going off on me. It sets me up for a bad day. I can’t breathe anymore. I’m just so smothered by people and all they want is to have me do all the things for them, planning, scheduling, driving, caring for… I need a break. Is it even normal to get an average of 52 phone calls daily? Most of which being the same people calling over and over and over again back to back leaving multiple messages over a minute long. Doesn’t matter if I set designated days and times to call people and create boundaries for myself because they are always pushed aside and when I’ve had enough I’m the bad guy. I’m the one who is all upset and treating people poorly and shouldn’t be acting out in such a manner. I should know better. I should do better. I should be better. I just need a break. I need people to respect me but they probably don’t even see me as a person that they could even try to treat decently. I’m so tired. Then I read books on narcissistic behavior and it basically says to take care of yourself because you can’t make people change and they will just continue to belittle and berate you. Nice to know there’s nothing you can actually do to fix it. I’m so tired of it all. How can so many damn lives fall apart an hour after waking up every single morning because I’m not there to do it all? And if I say no, I get calls from others about how dare I and how awful I am to family and need to get a grip, they just need help and clearly it’s my responsibility. If I avoid they send the police looking even if I say my phone will be off for one day. Police get mad and tell me I need to respond to my family and not avoid them, I’m so lucky I have them, I should be more grateful… and I would be grateful too if I had time to myself, for myself, regularly, but I don’t. Because I’m not allowed. Because I don’t matter. And that’s my depressed rant for tonight. I don’t want to deal with this crap again tomorrow. Ugh.

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This is just stunning!

…

forestbarkdollweil

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I never quite resonated with the term spoonie. Please, hear me out…

I feel like instead of having so many spoons, it’s just a spork. You can use that spork as a fork, as a knife, or as a spoon, but you can’t always have it all ways. Some days you may have to only use it as a fork. Then when you do use it, let’s say as a spoon, it’s not quite spoon-like and maybe a bit different. Maybe you snapped your prongs and are forced to use it as a spoon where a fork may be better suited? Your unique circumstances will create a different utility in the application of your day to day life. Maybe you need a spoon but you can only pierce with the prongs of your spork that day? Day to day, how your spork is used is as unique as you are.

But maybe you resonate as a spoonie or something entirely different and that’s okay too. Sometimes it’s scary to share our thoughts with others, but if we don’t, we may not find like-minded people who resonate with us!

Thoughts?

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Only this moment... @amalyze

Please do not remove author/creator credentials and repost without consent. Reblogging is okay as long as credit remains intact. :-)

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At my first LARP, I ended up offering to play an NPC the whole weekend and it was so much fun! We also had random people drive by and stop to play NPCs as well just because they saw the sign. Paid or not, that sense of community is truly wonderful! An app would be an amazing thing!

…I just woke up from a dream in which there was an app that notified you when nearby LARPs needed an NPC, and you could, like, go pretend to be a surly shopkeeper or whatever and get paid, like, $10 for it.

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M: It’s never been about making other people happy... It’s about disappointment.

A: How do you figure?

M: Every time you do something for someone you are inevitably disappointing someone else—that also includes yourself. So it comes down to one thing:

Whose disappointment is easier for you to deal with?

A: Why not just focus on the happy part?

M: You tell me how that works out for you when disappointment rears itself in your face. I guarantee it won’t be happy thoughts. When disappointment is inconsequential, it’s far easier to help another.

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Enchantment (by Michael Shainblum)

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⛓️

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Cover art by Johan Egerkrans for the 2019 Swedish editions of J.R.R. Tolkien’s The Hobbit, The Lord of the Rings & The Silmarillion.

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Yesterday

School basically said at our “not an IEP clinic meeting” because they changed it without notification, that outside data doesn’t matter and because my daughter had 2 good weeks at school, she doesn’t qualify for a 1:1, a smaller classroom, OT or PT because they can’t provide clinical stuff, and she doesn’t qualify for a therapeutic school. I hate the public school system. They will also continue using the saferoom and turn around room utilizing seclusion tactics because they work for the school.

Basically as parents, and her team of doctors, we have no say in how they choose to educate or not educate my child and can’t give us data of whether or not she is on task during the day because they can’t track that.

In other news, more neighbors being harassed by building management and want to start a petition to fire. I also met another parent who took their child out of the same school my child is in for the same issues with the addition of the school refusing to pay to evaluate their child, but complains of ADHD and autism symptoms. Basically state health care will refuse to pay because it’s got to come out of the school first unless the child is diagnosed before schooling begins.

Does that count as making friends? Kindergarten show tomorrow and letting the kid leave early. If it’s nice, we may try to venture to Davis Farmland or try to find something fun to explore/do. School was informed she will not take part in the extended school year because they can’t provide the consistency that my daughter needs where her ABA therapy place can. She’ll go 5 days a week to help prevent regression over the summer except holidays. The school could only do 3 days a week for 5 weeks and where she’s been more stable, I’m not about to let that slip due to the school’s inadequacies.

Parenting is hard because you have to deal with a screwed up system and people who just want to complain that everything you do as a parent is wrong...

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It’s been a while...

Raising a kid is difficult. Add in disabilities for the kid and no real treatment options except wait lists, ER stays and hospitalizations and life becomes a mess. The parent becomes a mess.. I am a mess.

We’re stable. For now. We have all kinds of support. The school frequently fails my child and it’s a job in itself to stay on top and monitor and document and report...

There are good things though! We finally got up on the list for neuropsych assessment. We completed that today. We also went to a restaurant and ate as a family and then had some fun at a trampoline park. Sure we could have driven an hour and let her attend school for two hours, but I think what we had in mind was way more fun! We wouldn’t have done this before medication. I’m not sure we would have made the neuropsych appointment safely. So those are big wins!

Our team is constantly on us about self care and they are right. I still game but there’s still a lot I yearn to do and don’t have the emotional or physical energy for. Going to the gym is one and I need to stop making excuses because I’m told it will help with my fibromyalgia and stop my joints from dislocating. Playing guitar. No real reason not to except every time I pick it up I’m interrupted to the point I can’t get away from the interruptions and it ruins my vibe.

Friends is another thing. I’m supposed to go make new friends and I just suck at it. Nothing ever seems to line up with current friends. Either I’m busy or they’re busy and it’s never stuff that I can just drop. My therapist thinks making new friends would be good for me. But I am becoming socially inept and off putting. I also feel like the kind of people I could become friends with live far away... as in other countries. *sigh* My child and partner have a hard time socially and I find since we’ve been rather secluded trying to get help for our daughter, my social skills are quite dismal. They both talk over me and interrupt so I’m just craving the kind of social attention that I need, but I’m too overbearing and awkward from not getting it. I’ve been in this place before but it’s still very difficult to crawl out of the hole.

Can I just go back to being agoraphobic?

I found out I do have a half brother. I’ve already lost touch. Him and his wife were losing her childhood home due to tax issues from previous family owning the property. She’s disabled and he takes care of her. They were supposed to go to court this month over it without any legal support. No contact since. I am in contact with his children and their mother. I’m an aunt and great aunt! Crazy! He’s not happy about my dad not being in his life. I don’t think he fully understands that our dad has issues. I hope he’s able to make peace either way. My dad wants to meet him and his kids and talk to them at some point. I found the court report citing my dad’s ex wife beat him and was cruel, which his ex wife confirmed, so a divorce was granted, but he was issued half custody of their child. She didn’t comply and kept threatening his parents so they told her to never contact them again or they’d take her to court again. Thus, my dad’s son never received support or got to know his dad as his parents got in the middle to protect him. He’s slow and gullible, probably on the autism spectrum as well with developmental delay. He also can’t read. I can see why they did what they did, but it still sucks.

I don’t know why but when I hit enter, it’s making huge gaps (using my phone and not a computer).

I guess I’m in a phase of rediscovery. How do I care for me and my family? I need to make more time for myself. What do I even like to do anymore?

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Ugh, I had to take melatonin because I could not fall asleep. I feel so off right now and tired. Hoping coffee will wake me! Looking forward to having dinner and maybe catching Solo at the theatre. 

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How to Cope

How to cope with anxiety and stress is not an easy task for me. My thoughts want to mull over whatever has gone wrong as if it’s being ground into my very soul and forcing me to relive horrid experiences over and over again not really accomplishing anything in a positive light, but pushing more and more negativity onto myself.

I get down on myself, and go over a frustrating incident including harassment from where we live. Don’t read on if stuff like this upsets you.

We had an incident with my daughter pushing things out her window. It was opened (the inside part) about 3 inches. The screen had come off the track on one corner and was severely stuck, but allowed for a small area to push things through. She screamed and yelled hi to her ABA therapist. I had seen her coloring at her desk. I asked her to get dressed so she could help me with the trash. She closed her door. I figured she got distracted. I heard her yelling, but she had been doing that recently and I didn’t think anything of it. I collected the trash. The buzzer went off and I allowed entry for her therapist. My daughter came out and still hadn’t gotten dressed. I reminded her again. She went back to her room and closed the door again. I began tying up the bag as her therapist came in. I was then informed she was yelling (which I heard), but also that she was tossing things out her window by the therapist. My heart sank.

So the building manager hasn’t been very friendly at all towards us (previous harassment issues and continued issues). She seems to think that autism just means we are bad people. Just because my partner has autism doesn’t mean anything to her-he just needs to grow up and stop acting so stupid. It also means we’re incapable of keeping track of our daughter who is diagnosed not only with autism but ADHD. There was a period of time where I felt I needed to find a way to permanently stay awake 24/7 to keep an eye on her, even during sleep.... But that’s impossible. I’m getting to the point where I am incredibly tired of having to make people comply to the demands of society. Because I can’t make my kid act normal or neurotypical, I’m a bad parent. Because I take 5 freaking minutes to tie up the damn trash and tried to give her some privacy because I’m trying to teach her to not just open doors and run in on anyone (she’s done this to strangers), by giving her some privacy to get dressed, I failed as a parent. But did I? I made her get dressed, we went out and cleaned up and I brought her to see the manager. She avoided, lied, and didn’t want to talk to her. So the manager said that’s okay and that she lies like her father... WTF? The therapist was there with me. Then she had a horrid day at school due to the ordeal.

I lost my shit because in the moment, I’m always incapable and never good enough for anyone no matter what I do or don’t do. I curled up in a ball on the floor for two hours crying. My partner had to take over for a bit. And at that point, I wasn’t good enough. I was able to push through and turn things around. I get so trapped in negativity. I should mention I recently stopped an antidepressant so my ability to cope was definitely worse. Any time I started thinking negative thoughts, I just kept saying “positive thoughts! positive vibes!” to myself because it was the only thing I could think of without making myself think (since it kept turning negative) that seemed somewhat positive.

I still don’t feel comfortable being here and I haven’t for a while. It’s like walking on eggshells and I do my best to avoid if at all possible, but then things come up that forces a meeting (annual inspection, maintenance, etc). I wish I had the money for a house and enough to put up a fence so my kid can just run and scream and be herself and have fun the way she wants to. Without being told I need to calm her down, reign her in, stop her from doing whatever awkward thing she’s doing... The same for my partner. They need a space for freedom. I need the freedom too.

Based on our income, I qualify for 40k. Which is no where near enough. If I want space between our home and neighbors, I’m looking more towards the outskirts which runs between $150,000-$190,000 and sometimes more. I just want a space to be away from people so my partner and daughter don’t have to worry about someone not being okay with their differences and intricacies. I also want it for me, because I’m tired of being told that I am never good enough as a parent or as a partner to reign my family in and force them to act normal. I don’t know, maybe being on the outskirts is asking too much or being too extravagant. I just know 40k doesn’t even get us anything local so it doesn’t matter anyway. It’s just a dream or a fantasy that’s too far out of reach. I’ll just keep hoping for a miracle that it will all work out somehow.

[amalyze]

Back again. Life happens. My laptop taking over an hour to start up and even let me log in was also an issue. Lack of space on my phone another issue that I will work on at some point. General lack of time though. Being a parent, IEP meetings, parent support group, ABA, doctors appointments, and piles of laundry? Living out of a laundry basket is a nightmare, by the way.

Working on decluttering and minimizing items--my closet looks so bare. Partner will be having surgery on his foot and will need to learn to walk all over again. Fused bones and such. It’s made me want to get rid of lots of things, also because I am only one person and cannot attend to all of these things every day. I need the simplicity if we are going to function as a unit during and after surgery... Even as we prepare it’s hard. Sometimes he’ll want to get rid of things that I do not, and vice versa, so we get stuck.

We just got the IEP in the mail. Once we sign, my daughter switches to full days and we will have to drive her in until busing is set up within 72 hours. I don’t know if this means we will stop ABA, ask for time at the facility to further help social skills, get a new person, or try to keep the same person but change the hours. It sucks that we have to be all professional, because I’m feeling sad if this turns into a loss of a therapist. We just click well all around and it’s been very beneficial and has helped my daughter improve so much. I’m afraid of losing the progress more than anything. We do have to meet with her BCBA to formulate a plan of action either way.

I was diagnosed with ADHD denouncing my previously long-standing diagnosis (over 15 years) of being bipolar. They couldn’t figure out why mood stabilizers made me psycho. Probably because they don’t help. I still get anxiety. I still get depressed. I still have fibromyalgia... The psych wanted to try me on adderal to start with. Funny thing I learned is that it is sulfate. I’m allergic to sulfates. People like to confuse sulfate with sulfa but it’s not the same. Sulfa or sulfonamides are antibiotics like bactrim. Sulfate is like sodium laureth sulfate--the stuff that makes bubbles in soap, or ferrous sulfate-- an iron supplement added to pasta, or taken as an iron supplement for anemia. Codeine is also a sulfate and I always wondered why I would break out in a rash and have trouble breathing when taking it. It’s a sulfate! Eye drops to numb your eyes to check for glaucoma also contain sulfates. The only version of sulfate I have been able to tolerate is magnesium sulfate. So now I need to return to discuss alternative treatment given my allergy. I’m allergic to both sulfate and sulfa. Also, if you have a sulfa allergy, you may react to migraine medicine sumatriptan and artificial sweetener splenda!

Going to browse tumblr now and see all the wonderful stuff I’ve been missing!

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Milky Way at Dawn in Yosemite Valley | Gregg L Cooper

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4900ft | bengfuller