Doctor’s offices, infusion clinics, at home hoping for a cancellation so my appointment will be moved up. Wait. Wait. Wait. Test results, consultations, more bland sterile waiting rooms. Generic lifeless rooms that all look the same. Some beige, some green. Fluorescent lights and videos on repeat blaring from TVs suspended above our heads that provide no real hope or comfort. Perhaps they promote the next great medication, or perhaps it is a nature show intended to soothe, but the volume is too loud to be calming. Instead, it is jarring and adds to my migraine or anxiety or both.
Over the last 11 years I have had to do so much waiting. I currently have nine specialists. Nine. I have two regular practitioners with special treatments for me, 20+ diagnoses for both my physical and mental health, and in-home infusions once a month that last five hours at a time for five days in a row. My health is a lot to handle. It honestly is.
In the last two years I have passed over from just having rheumatoid arthritis — something most folks have heard of but may not totally understand — to having rarer neurological diseases that almost no one can pronounce or understand and for which there are few treatments. The main one is small fiber polyneuropathy. I also have large fiber neuropathy — both of these diseases are exacerbated by inflammation from my autoimmune diseases, possibly even caused by them.
Passing the Time, Staying Calm
Waiting like this can be overwhelming and difficult. And it often has been. No matter how strong I think I might be, or no matter how tough or stoic, the relentless grinding and repetition of this waiting cycle wears on me as a patient. It used to dig into me until I began to bring sensory items with me to help me cope.
As time went by, carrying a set of items to help me pass the time became my norm. And if I was anxious, irritated, or wound up about seeing a doctor I would adjust the items accordingly. The items have also changed over the years as I have discovered more and more about myself.
I was diagnosed with sensory processing disorder (SPD) in 2018. SPD for me means that I get overwhelmed by all my senses, but I am exceptionally sensitive to sight and sound. I can’t tolerate fluorescent or bright lights, sudden loud noises, or high-pitched pitches/tones. If I am sitting in a restaurant with background noise, I can’t hear the conversation around me because I can’t filter out the noises and focus on what is near me.
My SPD includes touch, taste, and smell. And because of this I am very sensitive to being overwhelmed and having my body shut down so that I become unable to focus, communicate, or function. Not everyone who has SPD experiences it like me — with all senses or even being overstimulated.
I was also diagnosed with anxiety with panic attacks as well as a form of obsessive compulsive disorder (OCD) in August 2021. Part of my OCD is the obsessive thoughts that spin out of control, so having something to distract my thoughts helps.
In August 2021, I was diagnosed with Autism Spectrum Disorder (ASD). The OCD is part of my ASD. My sensory kits help me when I get overwhelmed. They allow me to deal with what’s happening to me, and to help avoid meltdowns and total shutdowns. Because of this I have set up sets of fidgets — mini sensory kits if you will — and sensory items around my apartment where I work and live so I can just grab something if I need it.
Finding What Sensory Items Work for You
At first it was just a sketchbook and a pen or a pencil. At times my hands hurt too much so I would just zone out and play a game on my phone. It let me not think too much about the pain in my body. It gave me reprieve from planning, analyzing, figuring out my next step, and helped spinning and raucous thoughts caused by my anxiety.
Here are a few more items that I’ve come to rely on over the years.
My SPD caused me to add earbuds, then noise cancelling earbuds, and most recently, noise cancelling headphones. They have made a huge difference in calming me down and helping me handle what comes my way.
Touch is important so I usually have something soft to touch or hold onto, usually something small. I have this sketchbook that has a cover so smooth it makes me sigh reflexively every time I touch it. Plus, a fidget of some kind. I like the popping and spinning kind. I have a bright spinner fidget with three smooth “blades” that is weighted in the center. It feels good to hold it in the center of my hand too. I can spin it, pop the center of the blades back and forth, or just hold the fidget.
I also have cute collectible squishies that are better than stress balls for me. They are softer and easier to squeeze. Stress balls are too difficult for me to handle. I cannot usually squeeze them more than two times. Between the RA and the nerve issues in my hands, I cannot squeeze very tight. That is what makes stress balls useless for me.
If a panic attack hits me, I can grab a squishie to help calm me down, focusing on the sensation in my fingers and my hand to help me step outside myself to break the cycle of panic screaming inside my head.
I picked up crochet during the lockdown. I found it to be extremely calming to count the stitches and hyperfocus on the design, yarn, and hook. If I have a longer time to pass, like during my five-hour, in-home infusions, I try to spend time crocheting. And I love to create pieces for other people. It makes me so happy, which makes the time pass even quicker for me. Plus, I get to be creative even when I am struggling with depression and I’m unable to draw. Although I still bring my sketchbook with me wherever I go to try to create and sketch, despite the depression.
Low music tones are soothing, rumble in my chest, roll through my nervous system to stop it in its tracks. The right music makes me stand still. It makes my nerves stand still. I have created several playlists on Spotify to help me when I am having a rough time. I can melt into my music. Music is a huge stim for me. A stim is a repetitive self-stimulatory behavior that an Autistic person uses to help them regulate external stimuli and/or emotions.
10 Questions to Ask Before Creating Your Sensory Kit
I have thrown quite a few items out there that I use, so I will put them together in a list (see below) to help you create a starting point. But first, here are a few questions to think about when creating your own sensory kit.
- How much can I physically hold/handle right now in a kit? (don’t be overzealous)
- How much time do I have to wait? Adjust items in kit accordingly
- What textures do I like – smooth, mottled, furry, pitted?
- Can I focus for a long time on just one task?
- Do I lose items really easily? Do I need a way to easily secure them if so?
- Do I care if people see what I am doing?
- If I hold a weighted item in my hand, does it calm me down?
- Do visual items calm me down? (pictures, videos, etc.)
- Do I need items to chew on? (gum, tootsie rolls, long-lasting candy, chewable necklace)
- What do I do at the end of the day to relax? How do I replicate that in my sensory kit?
What I Have in My Sensory Kit
I suggest creating your own sensory kit for the next time you have to wait for your doctor in a depressing waiting room. A small kit tucked into your bag for long drives, infusions at an infusion center, to set up next to your bed in case you have panic attacks at night like I do.
Here’s a look at the items I currently have in my sensory kit:
- Small Strathmore sketchbook – 5.5” x 8.5”
- Raffine Sketch Pencils with eraser or Pilot G2 Gel Pen
- Miniature Norman stuffed animal from “Secret Life of Pets” movie
- Pink squishie pig to squish in my hand
- Bright moon spinning fidget that pops
- 1 skein of yarn, 1 hook, and partially crocheted blanket
- Playlists up to date on Spotify
- Kindle App with my latest book
- Latest game updated on my phone
- Emergency inhaler
- Pill box with necessary medicine
- Heating pad
- Noise cancelling headphones
- Charged phone
I am constantly updating and changing my sensory kit as I learn and understand more about myself. Nothing is set in stone. What I do today I may never do again but that is totally okay. Please experiment and find what’s right for you to help you get through that infusion, that panic attack, or even that shutdown. Because this kit is yours and yours alone.
Want to Get More Involved with Patient Advocacy?
The 50-State Network is the grassroots advocacy arm of CreakyJoints and the Global Healthy Living Foundation, comprised of patients with chronic illness who are trained as health care activists to proactively connect with local, state, and federal health policy stakeholders to share their perspective and influence change. If you want to effect change and make health care more affordable and accessible to patients with chronic illness, learn more here.