Tag / communication

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 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.