Tag / autism

by Erin Nowicki

The Princess Chronicle vol. 2

Welcome to The Princess Chronicle!

Thanks to everyone who messaged me about how they loved the format of my little newspaper-style post; I think it definitely helps break up the flow from those longer blog posts. If you have any ideas of what else I could add to The Princess Chronicle, drop a comment or message me!

Bi-Weekly Journal Entry

Positive: The hunky and I went camping this past weekend at Chain O Lakes near the Wisconsin border. It was so fun, relaxing and invigorating. My SPD didn’t flare up too bad either, so that made it even better. I made sure to bring some compression socks, which helps my SPD in the evenings when it gets colder.

Real Talk: Now I love roughing it in a tent and sleeping on the ground, but the whole Princess and The Pea thing is legit. I can feel every rock, pebble and bump in the ground. Thankfully I have to take medicine to sleep, because I know I would’ve been up all night feeling the “pea” under my sleeping bag. I love to camp, so it’s totally worth it.

The vast majority of health professionals just want to help, so describing your challenges as accurately as possible is really the best approach. Plus, advocating for yourself is important…

-Some great advice from the Love, Your Brain blog

What You Missed Last Week

My hunky, Jon, took time to answer some questions about what it’s like to live with someone who has SPD. He did such a great job and it’s been really cool to see the responses to this. It’s also been neat to hear how his post has already helped others with their relationships. If you missed it, go check it out and if there is another question you’d like answered, make sure to comment on the post so we can do another round!

What To Look Forward To

Next week, I’ll be talking about how hard it is to rate my pain when people inquire about it (especially doctors). I sure am glad that I’m not Pinocchio, because sometimes I have to lie about my pain in order to really have them diagnose the problem…hmmm interesting eh? Make sure to check back next week for more!

If you aren’t a blog person, head over to Twitter and follow me there! I will post little blips from the blog, inspiring quotes, and other fun things.

by Erin Nowicki

The Princess Chronicle vol. 1

Welcome to The Princess Chronicle!

Every other week, I will be doing a newsletter-style of post. It will be a fun post filled with lots of goodies: quotes from my readings about SPD, journal entries about my current week, a recap of the previous week’s post, a quick write up about the upcoming week’s post, and who knows what else will get rotated in. I wanted to keep the momentum going with the blog, but then not overwhelm you with long blog posts about sensitive topics. Here’s what I’m thinking it will look like:

Bi-Weekly Journal Entry

Positive: This past weekend I was able to try a Huggaroo pouch, which I enjoyed immensely. (In the future, I will write a review about it with full details, but I just wanted to mention it as my positive for the week). The deep pressure that it provided, really helped me feel safe and pretty comfortable overall!

Real Talk: Our apartment gets extremely hot since we are on the top floor of an old, badly insulated house. So, we have to have the window units as well as two fans blowing to keep it comfortable. To be honest, I can’t stand the fans because it makes any hair on my body move and brings me an annoying pain. BUT, if we don’t have them on, then I’m sweating, which I hate even more. **ouch**

If we feel overwhelmed, our nervous systems drive us to defend against overstimulation and preserve the self.

Too Loud, Too Bright, Too Fast, Too Tight by Sharon Heller

What You Missed Last Week

I answered some of the main questions that I get after people find out that I have SPD. A takeaway from the post that I want to highlight is: “People tend to think that if someone does something that’s against “social norms” that it’s ok to immediately judge them instead of asking the WHY question and putting forth effort to try to understand.“

What To Look Forward To

Next week’s post is going to be a really great one! My hunky, Jon, agreed to answering some questions about what it’s like to live with someone who has SPD. If you have a question you’d like answered by Jon, drop a comment below or feel free to shoot me an email!

If you aren’t a blog person, head over to Twitter and follow me there, where I will post little blips of the blog.

by Erin Nowicki

The Pea

 “In the morning she was asked how she had slept. “Oh, very badly!” said she. “I have scarcely closed my eyes all night. Heaven only knows what was in the bed, but I was lying on something hard, so that I am black and blue all over my body. It’s horrible!” Now they knew that she was a real princess because she had felt the pea right through the twenty mattresses and the twenty eider-down beds. Nobody but a real princess could be as sensitive as that.“

Excerpt from The Princess and The Pea written by Hans Christian Anderson

In my first blog post, I talked a little bit about what Sensory Processing Disorder is and that I have been diagnosed with it. For this post, I wanted to answer a few questions that I get asked the most when people find out that I have SPD. Now, I’m not doing this to make you feel sorry for me or make you feel guilty. I honestly want this to be a place for people to be able to relate to, not feel alone, be educated, and to find more understanding. Make sense?

Question 1: Does this hurt? Does that hurt?

It hurts to be touched…by my clothes, the wind, rain, sweat, the list goes ON and ON. Once I tell someone about SPD, I usually get poked and then they ask if it hurts. After I say that it hurt, they respond with shock, “how can that hurt?” They then proceed to gently brush their finger on my arm and they ask if that hurts; and we go on and on until they’ve put me (without thinking) through excruciating pain and are still baffled at the end of their “experiment.”

I don’t always get frustrated when people do that, because I do know that it’s not something you see every day. I would rather people be aware and feel sad that I have pain instead of being in wonder of it and wanting to see the different things that bring me pain.

Question 2: Can I hug you?

This is the question I get the most. It usually comes with a very quick apology once I tell someone I have SPD, because they realize that their act of love was actually hurting me. I know their hug wasn’t meant to bring pain or to be mean..so I don’t really think much of it being a painful experience when I receive a hug. I am still human and desire to be hugged; I will never turn one down even if it is not as comfortable for me in the moment.

There are hugs that feel better to me: bear hugs are my friend. Bear hugs are also described as deep pressure hugs and that’s exactly what someone with SPD wants. If you give me a gentle hug and barely touch me, that actually brings me more pain; I don’t want to be treated like someone with a contagious disease. All that to say, YES you can hug me, just make it bear hug and we are good. 😀

Questions 3: How can you not like showers?!

Now, I get this question as soon as I say that showers are the worst. I HATE showers….I think hate doesn’t even cover my feelings for showers. I can actually go two weeks without one (thanks to dry shampoo, hats, and baby wipes). Don’t freak out on me…I don’t do that all the time, but if my SPD is bad, I will definitely skip a shower.

For the longest time, I was so ashamed of this because I would usually get made fun of, shamed for being a “disgusting” person, laughed at, & judged. People tend to think that if someone does something that’s against “social norms” that it’s ok to immediately judge them instead of asking the WHY question and putting forth effort to try to understand. Obviously, I’m not quite as ashamed of it as much anymore since I’m writing about this for the world to see, but it sure is taking a lot of courage. And even if this fact about me disgusts you, that is totally ok, BUT, hear me out so maybe you can at least understand where I’m coming from…

So, why do I hate showers so much and why do I hardly take them? I tend to ask this question back: Would you bathe yourself with thousands of needles every day just so you can be socially acceptable? I promise you that I’m not saying this with a sassafras attitude. I’m legitimately asking you this question, because that is my answer to why I hate showers and I dread them each time I have to take one. Showers hurt like fire and it takes all of my mental and physical strength to get in one.

Questions 4: “Why are you being so emotional?”

Physical feelings aren’t the only feelings that are affected by SPD. My emotional feelings are heightened as well. I get upset really easily when it comes to certain things-like commercials, movies with death, when I get angry, volume being too loud, etc… Now, over the years, I’ve been able to adjust my feelings a decent amount, but this still is a work in progress. I’m thankful for my anti-depressants as well, because they’ve helped balance and control my emotions a little better.

Since my brain is being told that something is worse than what is actually happening, I tend to get upset without being able to control it and sometimes not even realize why I’m even upset. Now over the years, I’ve become more aware of this and have actively tried to control these overwhelming feelings.

I have also been diagnosed with Depression and Anxiety and I will definitely talk about those at some point. I believe my SPD enhances both the depression and anxiety, which is why I can be even more sensitive about certain things.

Question 5: Does that mean sex hurts you?

For me, the hardest thing about this disorder is being married to someone who’s love language is physical touch and desires physical touch daily. Sometimes I find it funny that God brought me someone who has the complete opposite love language as me. What the heck, God! 😉

Like I said about the hugs, I am a human and desire to be hugged…so yes, sometimes I do desire to be intimate with my husband. The annoying part of the situation is that sex is absolutely painful in every way for me and it’s not something that I “crave.” I have to really be intentional about reminding myself that Jon needs physical touch and intimacy more than I do.

I don’t want to give SPD all the credit for the pain; there are other factors that have increased my pain level when it comes to sex. I have some posts coming up where I will talk more in detail about sex and traumas that I’ve experienced.

If you have any questions about me, SPD or any of the content I have posted, please leave a comment below, drop direct message on my Contact page, or shoot me an email. No question is bad or awkward, so please feel free to ask WHATEVER. I will either respond directly or I will write a post that corresponds with your question.

by Erin Nowicki

Fairytale or Not?

You probably know the story about the princess and the pea, but I bet you didn’t know that it is the most relatable fairytale for someone with Sensory Processing Disorder. Before I go any further, I want to establish exactly what SPD is, especially for those of you don’t know what it is. 

STAR Institute defines SPD like this: 

Sensory processing (originally called “sensory integration dysfunction” or SID) refers to the way the nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses.

To simplify this definition:

The “telephone wire” between your nerves and brain is disconnected somehow, which means, that your brain is being told that, for example, putting on clothes is painful- even though you know that it shouldn’t hurt. 

So…back to our fairytale. I remember reading the part of the story where the princess comes to the breakfast table and is absolutely exhausted because there was a small bump (aka the little green pea) that was bothering her all night. I remember TOTALLY relating to her and knowing exactly how she feels. The thing that people find funny and unbelievable is that is has to be “impossible” for a pea to cause pain. That is where they are wrong…this fairytale is not just about my life, but many many other people’s lives who live with Sensory Processing Disorder.

I wasn’t diagnosed with SPD until I was a Sophomore in high school. For many, many years, I got made fun of by “brilliant” doctors who didn’t believe me when I said that I hurt every time I touched something or something touched me. They would always laugh in my face and say that I was crazy and that I was being a drama queen. 

I will never forget the day that my mom and I were told that we weren’t crazy. We both looked at each other and just started sobbing. To have that knowledge that I wasn’t crazy and that I wasn’t making it up made me feel liberated. The doctor who diagnosed me was an occupational therapist who specialized in SPD in Autistic children. See, almost every person with Autism has SPD, but what most people don’t know is that there are tons of people without Autism that have severe cases of SPD (like me) as well.

The thing is, as an adult, there aren’t any reading materials that focus on being an adult with SPD. Most of the material focuses on kids with Autism that have SPD. Also, the support groups I’ve found on social media for adults with SPD, don’t really help either-or really I just haven’t had any success with feeling supported on those platforms. All that to say, I really want this blog to be a place where you can come to for advice, stories about my life while living with SPD, coping mechanisms, inspiration, knowledge, support, etc…

Now, I am a dreamer and have many dreams, but one of my ultimate dreams is to partner with an occupational therapist who specializes in SPD and write a book that is geared for adults living with SPD (whether or not they’ve been diagnosed with it). Maybe that will happen one day, but for now I will start with this blog.

**Disclaimer**

I will be excruciatingly honest about certain aspects of living with SPD and I will not hold any details back no matter how personal they are. Life can be REALLY tough when living with SPD, but if someone doesn’t write about those details, then people aren’t going to be changed for the better- and I don’t want ANYONE to feel the way I felt, because YOU ARE NOT CRAZY!