Tag / sensory integration dysfunction

by Erin Nowicki

Pinocchio

I promise I won’t label every blog after a fairytale…sometimes I just can’t help that I relate so much to fairytales. I guess it’s because I’m a REAL princess. 😉

“Can you please rate your pain level for me: 10 being the worst and 1 being the best?”

For someone with Sensory Processing Disorder, this can be a difficult question to answer. The thing is, for me, something as simple as running into a doorframe makes my arm feel like it’s immediately bruised or even cut open; to the point where I sometimes get shocked that I’m not bleeding like crazy because it hurts so bad. So, when someone asks me how bad it hurts or to compare the pain to something, my gauge is most likely wrong in a sense. I wasn’t planning on sharing this story (because it’s kind of embarrassing hehe), but it popped in my head while writing this and thought you might like it.

When I was 13 or 14 years old, my family moved off of the Army base and into our first owned house. On moving day, we had been offloading the truck with all of our furniture. It took us the entire day and even when the sun went down, we were still moving stuff. I decided to take a break and go explore my new backyard. The yard was dimly lit, but I saw this beat up dodgeball laying on the ground. And as any kid does when they see a ball and a big backyard before them, they run up and kick it as hard as they can.

It. Wasn’t. A. Ball.

This story is so funny to me now because I legitimately thought that silly rock was a dodgeball and after looking at it the next day, it clearly looked nothing like a ball. Although, in that moment it was embarrassing because honestly, I felt so stupid. My purpose wasn’t only to make you smile with my clumsiness, but to give you an example of how difficult it is to answer the “rate your pain” question.

I have never broken a bone in my life, but in that moment I sure thought I had broken my foot on that massive rock. As soon as I gained my composure, I ran inside the house and called my parents, while sobbing and freaking out because my foot had to be broken. As my parents hurried to take off my shoe and check it out, you guessed it, nothing was wrong with it at all. Are you serious?! What about my toe? It has to be broken! What, it’s not?! But it hurts so incredibly bad, how could nothing be broken?

I hadn’t been diagnosed with SPD yet, so we didn’t realize that I was truly feeling excruciating pain…even though it obviously was not even close to being broken. They asked me to rate my pain and of course I rated it a high 10, but because the physical sight didn’t prove this rating to be accurate, they gave me some ice and I was walking around 10 minutes later with a perfectly fine foot.

This is the part where Pinocchio comes in. 😀

Over the years I’ve had to make decisions when it comes to rating my pain for doctors or even people when they are curious about how different things make me feel. I am thankful I’m not Pinocchio because sometimes I’ve chosen to lie when people ask me if it hurt. I would have a long nose with a cute, little birds nest on the end. 😀

Now I don’t usually condone lying, but when someone asks me if something hurts, and I can logically see that it probably shouldn’t be hurting, I will sometimes choose to lie and say that it doesn’t hurt. I guess my thought is that I don’t want to have to explain my entire disorder, then proceed to explain that it does hurt even though what they are probably doing doesn’t bring pain for a “normal” person, or admit to them that something silly hurts me….wow that was a mouthful.

Maybe this is justifying my lying or maybe not, but a question I ask myself: is it really lying or is it me fighting my disorder in order to strive for “normality”? I like to think of it that way, because it helps me to keep going and fighting this frustrating and maddening disorder. So, if being Pinocchio is my fate, I accept it for now. 😀

Do you have a hard time rating your pain? Do you pull the Pinocchio card to get out of having to explain SPD? I would love to hear from you about how you make those ratings- drop a comment below or feel free to email me!

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 Prince

I don’t think Charles Perrault, the Brother’s Grimm, Hans Christian Anderson, or even J.K. Rowling could’ve created a better prince than the prince who was put into my story. Jon Nowicki is his name and Prince Charming has nothing on him…sorry Char. :p

Here’s a little background on hunky and then I will ask him some questions for you to get a glimpse into what it’s like being married to someone with Sensory Processing Disorder.

Jon was born in Wisconsin and moved to Florida in 5th grade. He has a degree in Music Ministry with an emphasis in percussion and is an incredible drummer. Not only do I get to have him as my drummer for Hello Wonder, he also drums for another awesome band called Flatfoot 56. H enjoys golfing (any Chicago golfers looking for a golfing buddy??), traveling, camping, and cooking.

The thing I love most about him is how much he cares about me. He has never pressured me to do anything I didn’t want to do, he always makes sure I’m comfortable (or at least as comfy as I can be), makes me laugh, feeds my unicorn obsession and is the most selfless person I know. Living with someone who has SPD, can be extremely difficult and I appreciate him so much because he’s patient, always willing to learn, and loves me for me.

♕Interview with a REAL prince♕

Were you aware of Erin having SPD before you got married?

Prince:

I found out about her SPD while we were getting to know each other. I went along and asked and did all the things people do when they find out about it (sorry Erin :)). During the first few months, it was hard to disconnect my fear of “hurting” her or causing her pain.

In the end, it came down to the fact that sometimes the emotional pain of SPD can be harder than the physical pain. Treating her like a “sick” person or steering clear of any physical contact can be just as hard. It took a long time for me to fully process it, but I’ve come to a point where I can be aware of her SPD, but it doesn’t control how I treat her. 

How do you support Erin when she is in a flare up?

Prince:

The best thing I’ve found is to ask what she needs. Communication is a big aspect of steering through the waters of SPD. It’s something we continually try to improve. I can assume that I know what may help, and sometimes I’m lucky, but other times the things that sometimes help could actually make the scenario worse.  Always ask what you can do before you assume what’s best.  

What’s the hardest part of living with someone that has severe SPD?

Prince:

One of the hardest parts for me is not being able to fully relate to her when she is in pain.  Sometimes I feel completely useless when she is flaring up, because I literally can’t do anything to help. That feeling of not being able to do anything for her is always the hardest part. 

How do you cope with the lack of intimacy?

Prince:

There is no real easy answer for this.  It is difficult. As Erin previously said, physical touch is one of my main love languages. The first years of our marriage have been tough. Learning how to live together, become adults, and manage all of it with SPD as well as processing her trauma has been a challenge.

If you know me, I am a fairly easy going, laid back individual. This along with the blessing of patience has helped me a lot with the intimacy aspect of our marriage.  Through the years I’ve also had great friends/mentors alongside of me who have been there for me.  It never hurts to have someone to be able to talk to, even if they don’t fully understand the scope of SPD. Personal honesty and open communication will give you the best chance for success. 

Erin is great about pushing through the pain to meet my needs. An extra hug/kiss/holding hands moment means so much to me. 

Do you have another question for Jon that you’d like answered? Please feel free to leave a comment below or direct message me on the Contacts page. No question is too awkward or uncomfortable, so be free. If I get enough questions, I will drop another blog post with his answers for you all to have.

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.