So here is a sneak peek into what it is like to live with autism and sensory integration issues. Recently we bought some new bath towels because some of our old ones are in pretty bad shape. I love the bright new royal and navy blue towels we bought, but I can’t stand to use them yet. Why? They aren’t coarse enough yet.
You see, if I use a towel that is fluffy and soft, my body doesn’t like the feel of it, and even worse, I never feel like it is drying me – even though it is. It makes the whole bathing experience feel incomplete and messed up. I have to use the old, ragged towels until the new towels have been used by my husband and washed enough times that they lose their fluffy softness, so I can stand the feel of the fibers against my skin after a bath.
It probably sounds minor to you, but it is hard for me to see those beautiful new towels and know that I can’t use them or it will drive me crazy. I don’t want to use the faded, ugly ones, but they do provide a superior drying experience. Ugh, I know – first world autistic problems, right? But it is annoying.
The whole covid mask thing has been a struggle for me. Probably for several reasons:
#1 – I have bad asthma, especially in hot weather and wearing a mask makes it much worse. Sometimes to the point that I have to escape a store or building immediately so I can breathe again before I have a full-out asthma attack (masks are required in buildings in our county).
#2 – I’m autistic. I have sensory issues galore and masks drive me crazy. I don’t like the feel of them and for me, I never really adjust. Of all the kinds of masks I’ve tried, the only ones I can even kind of stand are the surgeon ones, but even those bug me, and I can only bear them for a short time.
#3 – I have a little piggy nose, so I can’t keep a mask up, it is always slipping below my nose. It has gotten to the point that sometimes I quit pulling it up because it will just slip down again in 2 seconds, and it is easier to breathe with my nose uncovered anyway.
#4 – Anxiety. I think this plays into the asthma and the sensory issues thing. The more my asthma and sensory issues worsen, the more my anxiety kicks in, till the point where I’m not even sure if I’m having trouble breathing because of the mask and asthma, or because of the anxiety.
At this point, I pretty much just try to do outdoor activities or if I do have to go to a store or something, I get in and out as quickly as possible. Thank God I don’t have to work at a business. I don’t know how I would survive.
So what has your experience with masks been? Do they bother you? Did you adjust and get used to them? Are they required where you live? Do you have any of the same issues I have with them?
That headline isn’t exaggerating. I had a horrible dental cleaning experience yesterday. Now to be fair, my teeth are extremely sensitive, just like everything else on my body (thanks autism), so cleanings are never fun for me anyhow. There are always at least a few painful nerves hit during the process.
However, yesterday the lady who regularly cleans my teeth was on maternity leave so I had a new lady who was incredibly slow, annoying, and seemed to manage to hit about every nerve on every tooth, at least on the front ones. I can’t recall the number of times I flinched from the pain. At least a couple times I teared up. I was starting to wish I was having a filling instead, because at least then I would be numbed up some.
I feel bad calling the lady annoying, but to be frankly honest, she was. She was one of those people who just talks and talks and talks, which drives me crazy. It was especially hard not to be annoyed when I was already having a bad experience. A few minutes into the cleaning I was tempted to get up and say “I’m sorry, but I just can’t do this today”, and reschedule for when my normal person gets back. I managed to tough it out though. Glad it is over and my regular cleaner should be back before my next cleaning!
You ever go to a doctor’s appointment and feel like you somehow disappointed them? That’s how I’m feeling today. I went to see my psychiatrist and while he didn’t say anything overly negative or mean, I just left with the feeling that somehow he was a little disappointed in me.
Perhaps I am projecting here, but I kind of feel like he isn’t quite as supportive as my other doctors about my going on SSDI. Not because he doesn’t think I have real problems and medical conditions, but because he seems to think I have a lot of potential and maybe he thinks if I get disability I’m just going to sit around and do nothing the rest of my life.
This may be partly my fault if he has that impression. After all, I don’t normally talk about all the stuff I do enjoy doing while there. I only see him every couple months for a short visit, so I tend to focus on what is going wrong, not what is going right. I don’t talk about all the art I make and sell or the books I write and sell. I don’t talk about my blogging. I don’t talk about all the people I correspond with on social media. I didn’t mention that I was recently made a board member on the International Board of Sensory Accessibility. I didn’t tell him about the art contest I submitted three artworks to this month. I don’t tell him about the online communities for chronic illness, chronic pain, autism, and other conditions that have given me a chance to support others and receive support myself.
I kind of wish I had mentioned some of those things now. Maybe next time.
Some of you will probably find this post funny (honestly it is rather amusing), but if you happen to be autistic, OCD, or have a sensory processing disorder, you may relate to my very real struggles here lol.
So….I am at war with the crickets. Every single night they seem to congregate outside my bedroom window and conspire to drive me crazy and keep me from sleeping. Their constant noise is maddening and sometimes enraging.
I’ve tried several strategies to deal with the issue so far:
Sometimes I just lay in bed and imagine stepping on them all and squishing the life out of them. Or I envision dog-size crickets that I blow apart with an assault rifle. Imagining their cricket heads exploding brings a momentary sense of satisfaction from the annoyance.
A few nights I have gone outside at around 2am (when I normally go to bed), and took a broom to try to sweep them all away from the area or sprayed bug spray all around the area. Unfortunately, one night it was raining and windy when I did the bug spray thing and most of it ended up blowing back in my face and I think I might have poisoned myself instead of them. I don’t know if any of my neighbors have seen any of these late-night confrontations, but if they have, I do wonder what they think…
Yesterday we went to Home Depot and got some outside insect repellent pellets to put all along the yard on that side of the house. Not sure if that will work either, but it’s worth a try I suppose. The crickets were still around last night, so it definitely hasn’t worked yet.
Before you suggest noise-cancelling headphones or ear plugs, please know that those things are sensory hell to me in themselves. I do not like the feeling of headphones and certainly couldn’t sleep with them in. Same with ear plugs.
Yesterday was a weird day. I started feeling hypomanic (probably because of my psychiatrist upping my antidepressant again). Even though I was already feeling restless and off, I decided to go ahead and go with my husband to our weekly meditation group. Turns out that wasn’t the best idea. Have you ever tried meditating or even just sitting still in the dark for 30 minutes while hypomanic? STRESSFUL.
I didn’t outwardly spaz out or draw attention to myself, but I sure felt like it. My head was buzzing with what felt like a million thoughts and feelings, and my body wanted to get up and run around the room. I wanted to scream, but of course I didn’t want to make a scene and freak everyone out, so I screamed on the inside. By the time it was over, I felt like a nervous wreck.
As we were leaving, I told my husband what was going on and how much I had struggled, but I’m pretty sure he didn’t really get it, because a few minutes later he sort of sent me over the edge a bit. We stopped at the Chick-fil-A drive-thru to get some ice cream, and I became pretty agitated because there were two lanes and the one we joined took FOREVER. People who joined the other line after we got there had gotten their food and driven off BEFORE we ever got to order! Normally this kind of thing wouldn’t bother me so much, but in the state of mind I was in, it was infuriating.
My husband tried to distract me and cheer me up by being playful and sort of tickling/poking me. Normally this would make me laugh, but with all my senses already on overdrive and feeling angry, I screamed at him to stop and smacked his hand away. It was a huge overreaction and I felt bad afterwards, but I simply couldn’t help it. The rest of the drive home I could tell he was not sure how to act and that made me feel even worse.
Today I’m feeling more normal again, but we’ll see how it goes once I take my medication…
This is going to be a bit of a rant. Yesterday I received a letter from the orthopedic doctor and pain management clinic I was seeing for my upper back/neck pain. That letter turned my mood sour quickly. It said that I had been non-compliant with physical therapy and the spinal injections they had ordered, so they were kicking me out of the practice.
Why did it tick me off? Because the way they expressed it is totally not what we had discussed in person. First of all, I was not “non-compliant” with physical therapy. I tried it for several weeks and it WORSENED the pain rather than helping. It also caused widespread fibromyalgia and chronic fatigue syndrome flares throughout my body. This wasn’t the first time I had tried physical therapy, so I had been worried from the start, but they had promised they would accommodate my conditions, which they didn’t actually seem to do.
When I called the physical therapy office to explain that it was worsening my back pain and my fibromyalgia/cfs symptoms, they seemed understanding at the time. I was also having issues driving myself to therapy because when my back pain flares up, I can barely turn my head because of the neck pain. I asked the physical therapy office if I should perhaps try again in the summer when my husband could drive me, but the lady said that if the sessions were causing me that many problems, trying it again in the summer didn’t make much sense.
As for the spinal shots, the main reason I was fearful about going through with them is because they would not offer any kind of sedation. You see, I had been told how important it is for spinal injections that you be absolutely still during the process or you could cause damage to the spine. As an autistic person with severe sensory issues and intense over-sensitivity to any kind of sensory input (including pain), this worried me. I also have severe anxiety and that can sometimes make me shake and tremble involuntarily.
I had researched the shots and noticed that many other places offer sedation. I even talked to a few other people who had undergone the shots and had been sedated. I was not trying to be a pain or a drama queen, I was simply being cautious. Affording the shots was also a major issue at the time (since they required full payment up front), which I had explained to them.
In the end, I’m not upset that they were unable to further help me, I had already kind of figured that out. However, I am upset at the accusatory tone of the letter they sent me and the obvious insensitivity and lack of understanding for people who suffer from chronic pain/chronic illness and people who happen to have autism or other sensory processing difficulties. By the way, I will be sending them a letter back stating much of what I just said here. Hopefully they will learn something.
Hello! Today I’m sharing my most recent fan Q&A video from my YouTube vlog. In it I discuss my favorite musicians besides Michael Jackson and Nirvana, whether I believe having high-functioning autism makes it harder to have a romantic relationship, and exactly what kind of suicidal thoughts I have had in the past and why I hope people get help if they themselves are struggling with thoughts like that. If any of you have a question for me you would like answered in a future video, please ask in the comments section of this post or the video itself!
From the feedback I have gotten from those who watch my YouTube videos, it seems that people are most interested in hearing more about my experiences with Asperger’s Syndrome/high-functioning autism, so I am going to try to focus on that some. I figured the logical first step would be a video talking about how I got my diagnosis of Asperger’s Syndrome and how that affected me. So here you go…