Niagara Falls lit up turquoise in honor of Dysautonomia Awareness Month.
I try to keep my posts general about chronic illness, but since October is Dysautonomia Awareness Month, I have to “make some noise for turquoise.” Dysautonomia is an umbrella term that describes a variety of conditions. While each condition manifests itself in unique ways, the one thing everyone with dysautonomia has in common is that our autonomic nervous system malfunctions, which basically means we struggle with the functions our body is suppose to handle “automatically.”
My specific brand of dysautonomia is called Postural Orthostatic Tachycardia Syndrome, or POTS. This syndrome is primarily characterized by an increase in heart rate of 30 beats per minute or more upon standing (or an increase that exceeds 120 bpm). Having a racing heart is uncomfortable in and of itself, but of course, the symptoms don’t stop there, and it is often misdiagnosed or categorized as “just anxiety.”
The TV show The Doctors did a segment on POTS this week. It told the story of a woman with POTS who was called a “faker” due to her illness being invisible. I hear stories like this all the time, which is heartbreaking. Luckily, my close family and friends are extremely supportive, and most have seen my illness during its not-so-invisible moments.
I encourage you to watch the segment here, and if you want even more information about POTS or dysautonomia, check out Dysautonomia International. And, don’t forget to don your turquoise this month to support dysautonomia awareness — or in my case, teal.*
* Two years ago, a friend of my mine texted me and asked me what color represented dysautonomia. In my brain fog state, I matter of factly replied, “Teal!” About a month later, I received a package in the mail that included a super-cute teal scarf. The moment I saw it, I died laughing because I realized immediately that I must have typed “teal” when I meant to type “turquoise.” Close enough. I still love my teal scarf because it is pretty and represents such a kind, compassionate gesture on behalf of a wonderful friend. Plus, I love being reminded of times when brain fog is funny.
Recently while watching Golden Girls, Betty White’s character, Rose Nylund, had a particularly rough day and said something that both made me laugh and nod my head in agreement: “I feel like crawling under the covers and eating Velveeta out of the box.”
Photo credit: Nana B. Agyei
Not only do I feel this way on occasion due to my illness but writing can make me feel this way too. That’s when I realized that writing and chronic illness have a lot in common.
Waiting to hear back about your query, waiting for inspiration to strike, waiting for your writing career to truly start … writing is a waiting game. Chronic illness is no different: waiting for a diagnosis, waiting rooms, doctors’ waitlists, waiting for a treatment to work, etc.
I don’t receive personal emails very often, so usually when I check my email, it is some combination of work-related messages, spam and messages from organizations or retailers I’ve had some affiliation with in the past. And, by “some affiliation with” I mean shopping.
©Photocreo via Canva.com
Today, however, one of the emails caused a stir of emotion. The subject line alerted me that it was time for Fall Skeeball League sign ups. I bet you didn’t know I played on a skeeball team in my past life.
I am certainly no skeeball whiz kid, but I love it! Combine that with having a standing date each week with two of my good friends and pumpkin ale, and you have yourself a recipe for fun. But ultimately, I have a love/hate relationship with this fond memory. Continue reading
When it comes to chronic illness, social media can be a blessing and a curse. Especially if your condition prevents you from getting out of the house, social media can be a great way to keep in touch with friends and family. It can also be a great way to connect with online support groups.
Photo credit: Jason Howie
Being a member of an online support group comes with many benefits. First, you can make friends with people who are struggling with the same conditions and symptoms. Having a friend that truly understands what you are going through is invaluable. In addition to meeting people who you connect with on a personal level, the online support group can give you a feeling of belonging, provide you with knowledge and educational resources about your condition, and give you a place to seek comfort, let off steam or assuage your fears.
However, as with most things, there can be negatives to participating in social media when you are struggling with a chronic illness:
1. Fear of missing out (aka FOMO)
When your illness limits your ability to participate in social activities, Facebook, Twitter and Instagram can be death traps of self-pity, frustration and jealousy. From seeing pictures of your friends enjoying a night out to posts about weddings, babies, new jobs and new homes, social media can quickly make you feel like your life isn’t measuring up.