Tag Archives: IBS

Stupid Comments Made To Those With Disabilities and Illnesses

I really needed some humor today but Shabaz Says‘s YouTube video, although funny, hits very close to home.

I have an invisible disability. I am Autistic and have sensory processing disorder and an additional diagnosis of Social Anxiety disorder. Nobody can see these things but people often are dismissive and tell me to “get over it”.

Take note of the message in this video and remember that these are things you don’t say to or about ANYONE Autistic or otherwise.

I can take NO credit for the video below. Please subscribe to Shabaz Says‘s channel you YouTube for more great content.

Melissa McGlensey – The Mighty – 22 Truths People Affected by Sensory Processing Disorder Wish Others Understood

Melissa McGlensey wrights about Sensory Processing Disorder on The Mighty.

On a bad day, my sensory issues can be the worst part of my life. What makes it even harder is the fact that nobody, unless they have SPD, can possibly understand the pain and discomfort that I am going through when a full blown attack is happening.

People think I am being dramatic, whining, or complaining… so I keep things to myself. The truth is, some days I feel worse than others. Some days my symptoms go completely unnoticed but when they are bad they can not be ignored.

I can take ZERO credit for the following quotes. Please see the full article here on The Mighty.

“I do not complain about bright lights, smells, tastes, rough touch, etc., just to annoy others. I am overwhelmed by sensations and am learning how to process differently. Until then, please be patient with me.” — Sandra Cusack

“When I need to go reset, it’s not because I’m being dramatic. To be in a room of people is constant stress on my mind and body to make sense of an environment that makes simple sense to you. Sounds, smells, lights, brushes against people, all of it had to be decoded and reiterated into a language my brain can understand, and there can’t be more input when I’m trying to do that. I need a space free from all stimuli to give my brain the break it needs to process things… Just give me a minute to myself. And please don’t interrupt it.” — Hailey Remigio

“Just because I look fine on the outside doesn’t mean I’m not struggling inside… Even the professionals I take my kids to assume so much. They do things like talk to me in a crowded waiting room. They assume just because I’m an adult I’ve figured out how to handle my sensory issues. I didn’t know what SPD was for most of my life.” — Holly Newt

Autism is not my disability.

Autism is not my disability, altough I truly believe that it is the root of all my “superpowers”.

My disability is invisible because I am able to blend in with society. People don’t know if I am suffering. When I speak up asking for help I am told that I am not “Autistic enough”.

Autism is not the disability, although symptoms of my sensory processing difficulties can leave me crippled and unable to function.

The disability is society’s misunderstanding of Autistic people.

Cure culture says erase the Autism. Neurodiversity begs you treat us with compassion, learn about us, and accept us as we are.

Autistic children are sent to therapy to help them look “less Autistic”. They learn to be still, and learn how different they are from everyone else.

We become self-conscious and learn that our differences are something to be ashamed of.

So no, I am not disabled. Society has unrealistic expectations.

 

Off the Spectrum – How Autistic Are you?

YOU ARE ASKING THE WRONG QUESTION!!!

I HATE talking to people who do not know me about my Autism (face to face). I get comments like, well you must be one of those Higher Functioning Autistic’s – since you have a house and a good job. Your life looks great. There is nothing wrong with you.

In general I am a pretty happy and positive person. I’ve worked hard to learn to love myself as I am and have made effort to eliminate all negativity and bad people from my life. I smile all the time, even if I am not feeling well or having a bad day.

Technically my smile is more of a grin or smirk – no teeth. If I force teeth it’slike that scene from the movie Terminator where Arnold Schwarzenegger tried to learn how to smile. I wish I was exaggerating. I can smile with teeth if I am genuinely happy about something,  but this is one thing that I can not fake.

What they don’t see is my suffering. They don’t know that sometimes I am panicking on the inside or going through sensory overload right in front of them. How could they?

Growing up undiagnosed, I learned to hide these things years ago. Nobody sees me freaking out, knows when I am having stomach issues, or my head is pounding from the florescent lighting of the office I work in two to three days a week.

I don’t complain. I smile, push forward pull up my big girl panties and do what I have to do to make sure that I am able to provide the best possible life for myself. I have a good job because I work hard.

My mother allowed me to start working at the age of twelve. I started out with simple jobs like folding towels. She told me to always stay busy, find something to do. If I am on the clock I need to find work to do. So I did.

I put my heart and soul into everything I do THAT is why I have a nice home and a good job NOT because I am a “high functioning” Autistic. Honestly, I am not a fan of these high and low functioning labels.

People say I am high functioning because I have well developed coping mechanisms which basically means I keep all my suffering to myself to make Neurotypical people feel comfortable. Because I can pass for “normal” blend in and be one of “them” I must be high functioning. How offensive.

Please do not ask an Autistic person (or parent) how Autistic they (or their child) are (is).

This would be the number one on a list of things not to say to an Autistic person.

Thank you!

I found the following website while networking with other Aspies online and was VERY pleased with the following info-graphic. Please see the full thing on the Living Amongst Humans blog.  I really enjoyed it.

Full info-graphic here.

asp spec

Kayleigh Kill – How To Live With IBS

More good things from my news feed.

IBS sucks. A topic that is near and dear to my heart (and many Aspies). Kayleigh Kill gives great tips and advice on living with IBS.

Once again I can NOT take credit for this video please check out Kayleigh’s YouTube channel  for more great videos.:)

Kayleigh Kill – Dealing With IBS

More good things from my news feed. A topic that is near and dear to my heart (and many Aspies). Kayleigh Kill talks about her struggles with IBS.

Once again I can NOT take credit for this video please check out Kayleigh’s YouTube channel  for more great videos. 🙂

 

I Said No (To Something I’d Been Looking Forward to)

Every time I publish a blog about being tough and pushing yourself, there are always comments complaining that I am not paying enough attention to self care.

Yes it is possible to practice self care while pushing yourself. I do it every single day.

In the morning, when my sensory issues bother me the most, it is hard for me to get out of bed but I PUSH myself to do it anyway because I know the pain is only temporary. I try to brush my teeth, because doing so is good for me, but if the sensation is too much to handle on any given day I will stop.

I like to touch my limits, but I am very careful to be respectful of them. Pushing too far is not helpful to anyone.

Some things just suck too much to push through, like last night. I awoke to a spinning room and gargling stomach just after two am. Finally, after four hours of vomiting,  I am able to fall asleep.

When I wake up at eight I feel much better but my stomach is still tender and my body weak. I’d been looking forward to going out to lunch with my friend, but I  texted her to reschedule this morning. Today I need to rest and take care of myself. I also need to work (thank goodness I work from home).

Once again pushing myself while being respectful to what my limits are at this moment. I can handle working from home under a pile of blankets right now, but would not be able to handle doing anything in public.

Pushing. Pulling. Finding the right balance and never giving up.

 

 

Aspies – We Need to Toughen Up

I’ve been fairly successful in life because I push myself. I don’t have a big house, fancy car, or name brand things, but our modest home and practical vehicles serve us just fine. We life day to day, paycheck to paycheck, but life is good. We have what we need.

Every day I push myself to my limits – as I write this blog I am struggling through sensory overload just trying to get words out.

When I’ve gone too long without refreshing my batteries I sometimes get sensory overload. Many people now understand that sensory overload is something that many Aspies struggle with, but my sensory overload is a bit different.

All of my senses seem to connect to two parts of my body – my head and my stomach. Most of the time when I am worn down I will get a “headache”. Naps or long hot baths are often an excellent cure when all of my characteristic Aspie anxiety ends up in my head. I can (and do) push past a headache for a few hours if I need to get through my work day, although if I go too long I might cry.

Headaches are horrible but when everything shifts to my stomach I am crippled. every sound, smell, or movement, makes me gag. Sometimes all I cam do is like in bed in a quiet room but not today.

Today I am fighting the swirling nausea. I am choking down the urge to vomit. I’ve got work in five minutes and I’ve got a life to get to. My job lets me work from home fairly often, so on days like this – when I wonder how many hours of my life have been spent with my head in a toilet – are my own little secret. Never let them see you sweat.

Toughen up Aspies – the world doesn’t understand us yet, so we have to fight to fit in.  I am sick but I am pushing myself as hard as I can.

Autistic Comorbids

Many people on the Autism Spectrum have other comorbid disorders (myself included). Below are a few things that bother me even now as an adult.

Anxiety – I live in a near constant state of anxiety. The only thing that helps is my overly logical mind. I can normally “out logic” my anxiety and then distract myself. When a panic attack occurs, I can sit “calmly” on the outside and nobody would ever know anything was wrong (unless they noticed that I was a bit spaced out or tried to get me to talk).

Insomnia – my entire life. I have a hard time falling asleep and wake often. If I know that I have to get up earlier than usual in the morning my anxiety will keep me up all night in anticipation. Getting out of bed is also extremely difficult because I still feel tired.

Gastrointestinal / bowel disorders – I’ve always had problems with my stomach, as long as I can remember. There are certain foods that can trigger a horrible vomiting attack, but the main thing that seems to cause this is stress. It is possible that my stomach illness are what happens in the most extreme version of a “meltdown” but that is more of a theory for now.

Attention-deficit hyperactivity disorder (ADHD) – My teachers tried to convince my mother that I had ADHD in elementary school. I am easily distracted and have a hard time focusing on things that I am not interested in. My mind wanders off. However I have hyper-focus while working on tasks I enjoy. Luckily my mother refused to have me evaluated for ADHD because she did not want me medicated. I honestly think this is just part of the AS personality type.

Depression – it runs in my family and I now believe this is actually Autistic Burnout.

Sensory problems – most of us have these. Mine seem to worsen and become more intense when I am tired, but there are certain things I can never tolerate for long. Certain lights give me headaches and hurt my eyes. I can NOT handle the feeling of a manual toothbrush in my mouth or getting my nails filed. Also there is only a few types of socks that I can wear.

Nonverbal learning disorder – People with this disorder may not at times comprehend nonverbal cues such as facial expression or tone of voice. Has trouble interpreting nonverbal cues like facial expressions or body language and may have poor coordination. (Yes, Yes, and YES!)

Obsessive-compulsive disorder –  I have more obsessions than compulsions. Most of the time I am able to mentally talk myself out of doing something that I fell heavily compelled to do. (Although the nagging thoughts / urge to do something can linger on until I find something else to occupy my mind.)

“Obsessions themselves are the unwanted thoughts or impulses that seem to “pop up” repeatedly in the mind. These intruding thoughts can be fears, unreasonable worries, or a need to do things. When a person is tense or under stress, the obsessions can worsen.

Compulsions are the behaviors that may result from the obsessive thoughts [. . .] Compulsions may be rituals, repeating certain actions, counting, or other recurrent behaviors.”

Epilepsy  / Seizures – I have only ever had one seizure and it was at a time where I had way too much stress in my life. Perhaps this was brain overload in its most extreme form.