By Tiffany Early
Last month I took EDS on vacation to Disney World. EDS behaved the same as every toddler I met in the Magic Kingdom- a lot of crying, whining, and expelling of bodily fluids. This month I’m keeping life a little lower key. As a matter of fact, the most interesting place I’ve taken EDS since returning home from vacation is to the allergist. (I know, you’re amazed at the excitement in my life. So am I.) However, eventually my husband will grow tired of watching me binge on Netflix and Diet Coke, and he’ll want to venture into the real world. Here are a few tips I’ve picked up along the way while having date nights with my husband, EDS, and me.
Spontaneity is dead.
Occasionally I’ll see people post a meme on social media where a significant other leaves a note that says something to the effect of, “Be ready by 8. It’s a surprise.” My social media friends will gush over how romantic this gesture is. To me, it’s a nightmare. If my husband told me to be ready at a specific time, I would be a wreck. First of all, I struggle to get ready with a deadline. Second, I would be a hot mess if I were going somewhere and didn’t know the details. (Will there be food? Will there be food that doesn’t make me sick? Are we going somewhere climate controlled? Will there be access to water? Should I pack a cooler? Do I need to bring Snookie the Wheelchair?) I need a plan, and I may have to make changes to the plan along the way.
You look good in daylight too. I promise.
Whoever came up with the notion that dates are an evening activity obviously doesn’t understand that I don’t wear “real” clothes after 7 PM. Joe (that’s my husband) has learned that it’s much easier to take day trips with me. The last time we decided to go out together in the evening, I ended up taking a nap in a booth in downtown Nashville. (In my defense, the music was soothing.) Joe and I wait until he has a day off. He’s not worn out from work, and I’m not trying to function outside my window.
Staying awake is more important than perfect eye brows.
If I spend hours getting ready, I’ll never leave the house. I’ve to learn to accept my lack of energy and live in spite of it. My outfits aren’t as well coordinated as they were at one point, and I still haven’t mastered winged eyeliner. However, I can pull myself together enough to get out of the house and not scare small children. That’s an accomplishment.
As my EDS symptoms have become more noticeable, my life has become more complicated. My trips out of the house revolve around doctors appointments. My awake hours have turned into a lifelong game of “Manage That Symptom.” However, I have a spouse who has chosen me to be by his side for life. (I have no clue why, but I’m not going to question it too much.) I want to give him my best. That doesn’t always mean I’ll look my best or that my body will act the best. However, I’m committed to pushing through symptoms as best I can to enjoy life with this guy. That attitude has allowed me to go on adventures I would have never thought were possible with EDS.
When you have a chronic condition, you don’t get to take days off to enjoy life. Instead you play a waiting game of hoping for a better day and enduring the worst ones. What I have learned, however, is that relationships (with significant others, family, and friends) are worth the time and energy investment. Having fun with those you love is more complicated with a chronic condition, but I promise, it’s definitely worth it.
“What dating tips do you have for EDSers or any of our rare disease family? What do you do in order to enjoy yourself in spite of illness?”
Tiffany Early is a 31-year-old former middle school teacher who enjoys blogging from her back porch. She is an advocate for Ehlers Danlos Syndrome, Dysautonomia, and the chronic illness/ disabled community everywhere. Tiffany lives in Campbellsville, Kentucky (roughly the middle of nowhere) with her super fabulous husband Joe and tiny but aggressive dog, Zoey. She enjoys adventures with her husband, Netflix marathons with Zoey, and hanging out with her family- especially her super cute nephew and niece, Hagan and Mia.
Tiffany manages her blog ( www.crazychroniclife.wordpress.com ) where she examines life and relationships with chronic illness while laughing at the absurdity of the whole debacle. She also writes about her adventures in “Snooki”- the attention-seeking wheelchair. She also runs an online support group for those living with chronic illness. Tiffany strives to find the bright side . . . or at least the humorous side to living with Ehlers Danlos Syndrome every day and wishes peace, love, and health to the entire rare disease community.