Tag: Thoughts

Posted in ASD, Autism, Struggle, Thoughts

Only so many times I can complain about…

Posted on by Private Person

I didn’t realise that my blog was mainly complaining about negative things that have happened to me. I didn’t want it to be this way, but since I’m isolated and have no friends, (despite all my efforts and going very far out of my way, sometimes to just be used), I have no one else to talk to. I only see my psychologist once a month and I don’t want to burden my bf more than I already do.

Honestly, I never actually thought I would have actual followers. I’ve had many blogs and YouTube channels, but I’ve always been invisible, so thank you to the people who follow and read my blog. I only started this blog for something o do, but now I’m glad because I might meet new people.

I’ve been meaning to make more posts about food I like, food I eat, cooking, teaching myself how to sew from internet articles, YouTube videos and books I borrowed from the library.

Some quick updates:

•  I called the NDIS 2 weeks ago and they said I’ve been approved, so now I just need to wait for the agency to call me for the second meeting. I really would like to meet people my own age and maybe do some charity work or something meaningful with the time I have left.

•  I still really want to move to a different area, preferably quieter, with less houses that aren’t so cramped together. I want to live on flat ground, not a mountain side. We have a great view of the clouds, but a drive way that’s impossible for me to park in and difficult for me to drive out of.  I would love to live in Stars Hollow from Gilmore Girls. I don’t know if small towns like that even exist in Australia.

•  I keep saying I’ll give up trying to make friends, but I keep doing it and keep failing. miserably. Last Thursday I attended an art group I had been to many times before. The class is mainly elderly church women and I think I’m the youngest (in my 40s). The women are nice, but I wish they wouldn’t make lunch plans in front of the class if all of the class aren’t invited. Its just rude and really hurtful to me. I ended up crying in my car afterwards. Then my bf called and I cried to him. He said these people are toxic and have no lives. This has happened before, but I keep returning, listening to peoples boring endless stories about wearing an onion on their belt which was a style at the time…

Why do I keep punishing myself? I want friends so badly, I guess I scare them away with my desperation. Is it me? I try to be nice, I try to contribute ideas etc, but I can’t break down the wall between us I guess. I know I should stop trying. Hopefully in the future things will change and get better.

(c) ASD and me 2019

Posted in Frustrated Aspie, Noise, Struggle, Thoughts

I’m a customer, not a criminal, so don’t treat me like one.

Posted on by Private Person

I went to a Big W yesterday. It used to have good quality clothing, but in the last few years, I’ve noticed a change to more cheap, low quality clothing, a lot more of polyester and crap I can’t wear. For over 20 years, I have shopped and chosen Big W over other brands and have been a loyal patron.

But this will change after yesterday.

I wanted to find a lamp. I hate the ones at the local Target, so I waited a week to visit Big W so I could go while visiting my parents. I looked everywhere, but I couldn’t find any. And while I was searching, I noticed how messy and untidy the shop was.

I think they have forgotten they were a department store, not a Rave, and loud music was blasting through the overhead speakers. This started my Tinnitus and I decided to leave. I had wasted about 20 minutes and that was enough, so walked towards the exit.

Now, on my arrival, I had noticed the security guard and had hesitated for a second to enter, but then I saw an immigrant woman with  a handbag twice the size of mine walk past unharassed, so I thought it would be safe to enter. Gee, was I fucking wrong.

I had my finger over my ear to try and block the noise and walked out of the exit. The “security guard” said I need to check your bag. I said “no this is a hand bag you’re not allowed to check this”. He replied rather arrogantly “yes if its over30 cms I can”. My bag is smaller than that, so I knew this was him trying to bully or intimidate me, but I said okay and opened the zipper, pulled out a zip lock bag with pads in it and said “here look at my pads you fucking pervert!”

I was so fucking furious!

This is actually against the law. It DOES NOT apply to personal handbags. I also think I was discriminated against because of my skin colour. Normally I wouldn’t think this, but since he didn’t check the migrant woman’s bag, I am now.

I have so much more to say on this subject, but its making me angry and sad to keep thinking about it, so I’ll end by saying  this bag search thing is harmful to business and extremely hurtful to innocent people. If this is the future of customer service, I’ll stay home and buy online.

(c) ASD and me 2019.

Posted in #No cure needed, ASD, Autism, Frustrated Aspie, Struggle, Thoughts

My Autism is not going to be cured so stop asking me to prove it exists!

Posted on by Private Person

I have been trying to sign up to an online course and it is, of course, difficult and frustrating.

I already sent my paper work in last year, and was approved and have been enrolled, but then I wanted  to transfer.  And get help from a Councillor.

You would think that being disabled, they would make it easy for me to enroll.

But no.

When I call, its the stupid automated dialing system where you need to choose options and “Press 1”.

The first time I called, it didn’t work and there was no hold music, so I hung up and tried again. Then I was finally able to get through to a human, they needed to transfer me and force me to wait 3 minutes for someone on the other end.

This new person, although polite, told me that I needed to fill out more forms to PROOVE my disability  status.

I really wanted to scream!

So to this company, and everyone else, listen up:

1. There is no cure for autism!

2. There never will be.

3. There doesn’t need to be a cure; there is NOTHING wrong with us!

4. I really do not  want to talk about my Autism, especially to some random person on the phone.

5. Stop asking me to prove that I have it EVERY SINGLE TIME I want to study!

6. Just tick the fucking box, so I can get on with my life and stop discussing my very private health issues with strangers over the phone.

I’m going to say this again: THERE IS NO CURE FOR AUTISM!

Do not believe what some crazy trouble making bitch said on her blog, she did not cure her son’s Autism. The best you can do is get an allergy test for your child, or yourself and adjust your diet.

I am so fed up and exhausted by this shit. I just wanted to learn something to help me start a small business so I can work from home and not have to go through the agony and bullshit that are modern job interviews.

That may be my next post.

(c) ASD and me 2019.

 

Posted in Thoughts

The meeting went well

Posted on by Private Person

I had the appointment yesterday with the NDIS provider. It went well. I left home on time, but had trouble finding parking, so I arrived late.

The lady who interviewed me was nice and friendly and she seemed genuinely interested and listened to what I said.

She said she doesn’t know how long the paperwork will take to be approved, but will submit it straight away.

So I’m back to waiting, but I’m closer this time so hopefully I’ll hear from her soon.

(c) ASD and me 2019.

Posted in Thoughts

Tomorrow is my appointment with the NDIS provider

Posted on by Private Person

My appointment is tomorrow. I’m so glad it’s finally here, but I’m also nervous. I don’t like strangers asking me personal questions and being intrusive in my life, but I know they need to to know what help I need.

And I really do need it.

It’s at 11am, so its enough time to wake up, have breakfast, then arrive on time. They said the appointment will take about 2 hours.

Hopefully everything will go well and I won’t ended up crying again.

Wish me luck.

(c) ASD and me 2019

Posted in ASD, Autism, Thoughts

They said yes!

Posted on by Private Person

The NDIS called me yesterday and said I was accepted.

I have an appointment on the 2nd of July.

They also send me paperwork to fill in and take with me to the appointment.

My head is filled with thoughts, but they are like a hurricane, so it hard to sort through them to write down and record. It sounds like a lot of bees buzzing in a hive.

I just hope they can actually help me recover. I really hate being depressed, anxious, helpless. It has robbed me of most of my life, so hopefully now I can reclaim it and he healthier and happier.

Even if not happier, just not sad would be good.

(c) ASD and me 2019.

Posted in ASMR, Struggle, Thoughts

Trying to record ASMR audio is difficult with tinnitus

Posted on by Private Person

ASMR means Autonomous Sensory Meridian Response. It if you listen to it, its meant to give you tingles on your skin and spine. Some people love it, some don’t get the tingling. I have felt tingle a few times and its a very strange sensation, like a feather gentle touching your skin.

This past year, I’ve been trying to record ASMR videos. It has been extremely difficult for me for many reasons.

1. I’m not very “techie”, so it takes me ages to learn new software. I get frustrated easily and have lost my patience, so I usually quit.

2. I now have sometimes very loud tinnitus, so its hard to tell the difference between my tinnitus and white noise on the recording. Turning the volume up just makes it worse.

3. I really have no ideas what I’m doing. I have done loads of research, and found the best equipment is very expensive.

4. My Samsung phone is great to use as a phone, but not as a recording device. Everything sounds tinny and a bit distorted and has lots of white noise and I have no idea how to remove it.

5. Its extremely difficult to find a place that has NO background noise. I even went to a national park, and it has car engine noise from people driving past.

I want to do this to have some purpose to my life, than just shopping and endless house work and waiting for the NDIS to hurry up.

It doesn’t matter what I do, I seem to always struggle. Other people seem to cruise along, yet I’m almost drowning and need a floating life preserver.

(c) ASD and me 2019.

Posted in Thoughts

Still waiting to hear from the NDIS

Posted on by Private Person

I’m still waiting to hear from the NDIS. I’ve been calling occasionally and every time its the same answer: your application is still processing.

I know there are probably people who are more disabled than me and need help more, but I still really need help.

I don’t want to call too much because i might cry and I hate crying, especially on the phone, also because might get anxious which people usually misinterpret as anger. I know the people who answer the phone are only doing their job and have nothing to do with the processing of forms, so I don’t want to be rude to them. I’ve volunteered in a neighbourhood centre where I answered the phone and sometimes callers were rude and that was hard to ignore.

I only lasted a year.

I guess all I can do is wait and hope they get to me soon and dont lose my paperwork.

(c) ASD and me 2019

Posted in Movies, Thoughts

I watched The shape of water

Posted on by Private Person

I watched The shape of water and I loved it. I identify a lot with the main character, Elsia.

Its not a cheesy B grade monster move, like Creature from the Black Lagoon, its a beautiful love story about being brave, doing what’s right, following your heart, finding happiness, love and your true self.

I think the antagonist is meant to be an alpha male, but I just think he’s an aggressive, abusive jerk. You can’t build yourself up by holding other people down. You may think you’re superior, but really, you’re just dragging yourself down with them.

I think this movie is about accepting peoples differences, and accepting yourself, as a human with flaws. The main character is mute and has felt lacking or defective in some way her whole life. I empathise, since I’ve always felt different and lacking something, I’m clearly different from other people, I don’t understand them and they don’t understand me.

This movie has hidden meanings, it reminds me of the book Who moved my cheese? which on the surface, seems like its about mice looking for cheese in a maze, but its really a metaphor for accepting change in your life.

I’ve seen mixed reviews, but I suggest you watch the movie and make up your own mind.

(c) ASD and me 2019

Posted in MRI, Thoughts

Did you know your brain had tonsils?

Posted on by Private Person

I saw the ear specialist last Friday. I didn’t like the news. He said I don’t have a brain tumour or an enlarged blood vessel, he was hoping for. Since its not, he doesn’t know why I have tinnitus in only 1 ear.

He thinks it may be my heart beat echoing in my ear. Oh and I have “cerebellar tonsils that are slightly just over 5mm below the foramen magnum which raises the possibility of a Chiari 1 malformation”. What ever it is, its fucking loud sometimes and extremely annoying. But on the bright side, I may be able to get a free hearing aid.

I was tired after waiting for over an hour and didn’t register what he had said. Then he felt my pulse and he wanted me to listen to my ear and see if it synced up with my heart beat. I was distracted because the specialist is very handsome, so I couldn’t concentrate.

He said I don’t need to see him any more but if it gets worse or I become paralysed on my face, go to the emergency with my MRI results immediately. Then shook my hand. his skin was smooth and cool.

Then we left. My partner wanted to get home to avoid traffic, so I have to go back to the city on the train to get my MRI scan results from the radiologist.

I don’t want anything else wrong with me. Its like a bad game show:

Surprise illness!

A game show I didn’t choose to be on, that I find very boring, tedious, painful, annoying and that I can’t leave.

As for the title, did you know brain had tonsils, do an internet search for “Chiari 1 malformation”, if you want to ruin your day.

(c) ASD and me 2019.