Life with Ehlers Danlos: Surviving Exhaustion While Still “Adulting”
March 15, 2016
By Tiffany Early
That’s not exactly a news flash. I’m forever and always tired.
One thing that I have in common with the majority of the chronic illness and rare disease community is my chronic fatigue. There isn’t an easy answer to handling my bone crushing exhaustion. I can nap, change my eating habits, sleep 12 hours a night, and none of those things are going to make a huge difference. I’m just tired, and I feel like my Global Genes family will understand what I mean.
However, regardless of how tired I am, I still have to be an adult. There are, unfortunately, still appointments, errands, and responsibilities that exist in spite of my need to sleep forever. I’ve had to develop a plan for existing in the “grown up world” in spite of the fact that I require a nap. Here are the rules I live by for participating in life.
Know your window.
At any given point during the day I could nap (or at least fall into a sleep like trance- pain makes actual sleep difficult at times). However, there are certain hours of the day when I am more likely to be functional than others. For example, given a choice, I will never schedule anything in the morning. Once I wake up, I spend a few hours getting my blood pressure to rise enough for me to be fully coherent. (Oh coffee, how I love thee!) I just can’t do mornings. I also know that my pain levels go up at night, and tolerating pain is exhausting. I have officially become my grandparents and started scheduling dinner at 4:30 PM. If you want to have plans with me at 8 PM, those plans had better include pajama pants, Netflix, and my super snazzy zebra- striped heating pad. My window of semi- alertness is roughly noon until five. If I have any say in the matter, I always schedule within that window.
Have a backup plan.
Obviously, the entire world doesn’t revolve around my “window” though, so I try to have a backup plan. This involves a little bit of everything imaginable. The other day while driving across town for an allergy shot (Yes, I know. My life is very glamorous.), I was so tired that I wasn’t sure I could drive the entire 5 minutes to get there. I don’t mean that I was sleepy and feared that I would nod off- I mean, that I was so fatigued that I couldn’t muster the energy to hold my arms up to turn the steering wheel. My car is equipped for such moments. I pulled off the road and ate a snack I had stashed in the car. I went through a drive-thru for a cold drink. (Obviously, my fatigue would be worse if I made a regular habit of popping through a drive-thru, but desperate times call for desperate measures.) Ten minutes later- I was functional. I went straight home afterward and crashed for a couple hours, but I was able to safely accomplish my task. That’s what mattered.
Fuel is important.
I am hardly an expert on making healthy food choices. If you put a chocolate chip cookie in front of me, I can promise you it will disappear almost immediately. However, I have learned that if I don’t give my body some decent fuel, my fatigue is more crushing than normal. Before I attempted writing this, I fixed a protein smoothie to ensure that my body was somewhat nourished and hopefully capable of doing its best. If I’m hungry, I’m extra exhausted. If I overeat, I’m extra exhausted. It’s a delicate balance.
Operate in energy-saving mode.
When my cell phone is running low on batter, it switches to energy save mode. The screen isn’t as bright; the phone doesn’t vibrate every time I have a notification. Essentially, my phone will do all the same basic functions it normally does, but a few of the extra “bells and whistles” aren’t present. I’m pretty sure I live life that way. I feed my family, but I use many pre-chopped/ pre-cooked products. We eat off paper plates. If there’s a scrap of food left, I freeze it. It could be repurposed into a low energy meal later. I also do this regarding my personal appearance. If I have to go somewhere in the first half of the day, I shower the night before (because showers use what little energy I have). I braid my hair before bed, so it will look like I attempted to curl it the next day. Anything that I can do that will save me from expending needless amounts of energy, I do it. I’m not lazy; I’m practical.
Try to keep the chip off your shoulder.
This probably makes me a terrible person, but this is the hardest tip to life with fatigue for me to follow. There was a time in my pre-disabled life when I thought I was tired. However, I was one “sleep in day” or early bedtime away from being back to normal. (Granted, I’ve always had Ehlers Danlos Syndrome, but I wasn’t overwhelmingly symptomatic until about 5 years ago.) Now, no amount of rest is going to make me feel normal. That’s fine; I’ve accepted it as a way of life. However, some days I lack in compassion for healthy people who complain about being tired. Again, I know that makes me a horrible person. While I try not to act like I’m “Tiffany, Queen of Suffering,” sometimes I’m overwhelmed by others’ complaining about their exhaustion. I feel like they should understand that mine is obviously worse. I’m wrong. I’m oh so very wrong. First, there is no comparing suffering. Every person has struggles, and it is just obnoxious of me to pretend I understand someone else’s life. I know that. I really do. Having said that, I would be lying if I told you that I never have a chip on my shoulder in regard to fatigue. It’s a waste of energy to feel that way- not to mention it could quickly make me a needlessly hateful and bitter person. I don’t want to live that way, so I’m trying to carefully guard my shoulders to keep the metaphoric “chips” away.
The truth is that I will always be tired. It’s part of my disorder. I’m learning to handle it as responsibly as possible. Living with a chronic illness will never be simple, but as long as I keep trying to find what works I’m hoping I’ll stay ahead of the curve. There will be days when I’m tired and cranky and not fit for human interaction. On those days, maybe I’ll just call off the whole “being an adult” thing. My dog and Netflix won’t judge me as harshly.
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.
Facebook– Facebook Support Group Instagram-| @crazychronictiff
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