About 7 years ago, I went from being an exercise enthusiast to suddenly needing a nap after walking up the 5 steps to my house. It became a daily occurrence to feel as if I had simultaneously been hit by a truck while also fighting flu-like aches, pain, and EXTREME exhaustion. I had always taken pride in being strong, athletic, and capable but suddenly I couldn’t physically make it through preparing breakfast and getting my kids ready for school drop off. Numerous Doctors would come up with little in the way of answers. Most medical professionals I would see, brushed it off as being a busy Mom; tiredness just came with the territory. No one seemed to believe me when I said that months prior I could run for an hour without effort. Now I could not even carry my purse from the car and into my home without being out of breath. This wasn’t normal for me. One particularly pleasant male Doctor would tell me “Maybe you’re just getting old. Time to accept it.” Yes…..at 41 it was probably time to start giving up on life. Maybe I should just start digging that grave.
My health issues continued undiagnosed for a long time and I would eventually lose my eyebrows and eyelashes. I gained about 15 pounds and had discovered a very noticeable bald spot at the crown of my hairline. To combat some of the physical changes, I took to wearing false eyelashes and some clip-on bangs. This was not out of vanity, although it WAS TOUGH to suddenly look in the mirror and barely recognize myself. I found that if I fixed myself up a bit, I mentally just felt better and could somewhat fake out the tiredness enough to push through and function in a relatively normal capacity on most days. If I felt like garbage but could look in the mirror and feel somewhat like less of a mess, it did put me in a more positive frame of mind. I gave up less often. I pushed through.
My friends were kind but perhaps a bit dishonest with their positive reactions to my fake hair “enhancements,” but my Grandma at ninety-three was more brutally honest. Grandma would take one look at me wearing my fake bangs and exclaim, “What is that….a dead rat on your head? Take that stupid thing off! You look ridiculous.” That was the end of my foray into the world of fake hair. I just gave up attempting to hide my thinning hair. I cut off probably about 12 inches of my previously long, thick hair and began to part it differently. I am fully aware that any cosmetic changes I experienced are nothing in comparison to facing an illness that leaves your life in question. I am no fool. I know it could have been worse. It still sucked though. My body was betraying me and no amount of positive behavior or thinking could change that. I always assumed that people who did not take care of themselves were just possibly lazy and I attributed my good health to more than luck and good genes. I believed that because I put the effort in to take care of myself, I would always remain healthy and strong and I took great pride in being athletic. Now I could barely get out of bed unless I absolutely had to and even then……it was a struggle. I became a jerk. I was angry. I like to be busy.
As my physical pain became more debilitating, I found it extremely difficult to continue being the hands-on Mama that I always had been. I was not fully present. It became tough to stay awake past 8:00 pm. There were some days when I was worried that I might need to CRAWL up my stairs to make it to bed. My legs just felt too weak to carry me. It also became difficult to remain enthusiastic for the inevitable, neverending stories from my kids at bedtime. I just had zero tolerance for any bedtime delay tactics because I just wanted to cry from being in physical pain. I needed to sleep. I didn’t need to hear ONE MORE story about how the pizza at school was soggy and how your friend looked at you funny in the hallway! I understood that my kids needed to talk about their day, but I was always barely hanging on. Eventually, my family sensed my exhaustion and saw how much I was struggling, so they would remain quiet or just “act out” and be difficult. I didn’t want to miss out. I would make blanket “beds” on the floor next to my own bed so that I could just lie down and TRY to hear the stories. The kids thought it was fun, but I often fell asleep mid-story. I had to trust that my kids would remain happy, resilient, and make good decisions, even when I couldn’t always give immediate guidance. This was a giant leap of faith and, also a major producer of Mama guilt.
The Mama guilt would continue with things like playing at the playground. If my children asked to play at the park, I would immediately be thinking ahead that if we went to the park I would run out of my limited energy for the day. I would be wiped out before we even traveled back home….but then it would be time to make lunch, clean up and head to a class or lesson. No time to rest. I began to plan my days always looking for options to rest. I would worry about how my knees would not always want to cooperate with my attempts to walk. You kind of need to walk and run after your kids on a playground. If I had been seen sitting down at the park and not interacting with my kids, I would certainly just look lazy to others. And what if one of the kids asked me to push them on the swing? Nobody would be able to see how tough that was for me. I looked perfectly capable. If I said “no,” and someone were to hear me…….that would not be viewed kindly. Bad Mom. I would be a bad Mom. I didn’t want to be a bad Mom. I didn’t want to be judged.
The opportunities to be a disappointment as a Mom lurked everywhere. How can you be a crafty Pinterest Mama like you are supposed to be (sarcasm) when your hands cannot easily open jars of paint? Don’t these kiddos want to watch yet another T.V. show? How about some YouTube videos? Now I would be rotting their brains. Awesome. The T.V. as a babysitter is perhaps the most villainized Mama move but I often had no choice. I needed to conserve my energy and do only what was necessary, such as basic clean up, food prep, and laundry. These activities would leave me exhausted, in pain, and in need of a long nap. If I did not give in to my need to sleep, I wouldn’t be capable of keeping up with all of the other late day activities and appointments. Often, I would still need to pull onto the side of the road and start a movie on our way home from an activity so that I could quickly catch a 20-minute nap because I would be nodding off while driving. In case you were wondering, falling asleep while driving is not exactly safe. It would take 2 more years, but an extremely attentive female physician would look further than the Mommy burnout theory and would discover Lyme disease and two autoimmune illnesses. A healthy autoimmune system is meant to fight off harmful germs that should not be in your body. Basically, when you have an autoimmune disorder, your body fights healthy tissue as if it is a threat. This will lead to inflammation, muscle aches, exhaustion, pain, and damage to joints that cannot be undone. There may also be inflammation and damage to your lungs and heart. By the time someone listened to me and did the proper diagnostic detective work, I had been missing out on so much in my life. I even lost a few friends. It’s no fun to hang out with someone who falls asleep on your couch, leaving you to tend to her children during a playdate. Many friends never even thought to ask me why I was suddenly behaving so differently. Simply asking if I was alright may have been nice. When had I ever just fallen asleep while hanging out?
Fast forward to today and I have finally found a better combination of medication, supplements, and self-care. Most people would look at me and see a very well put together person but looks are deceiving and I still have days where I struggle to function. My “disability” (of sorts) is silent. I have more energy most days now. Not every day… but on those less than stellar days I choose to give myself some grace and bow out of life for a while. I cannot help anyone else if I am out of commission. Mamas forget that. Take care of YOU first. My hair eventually grew back. I have eyelashes again. Yay! Those pesky eyebrows still choose not to cooperate too well, so I usually fill them in with some powder to avoid looking like some bald-browed, alien-type creature. If you ever see me in the frozen food aisle sporting brows like Groucho Marx, keep your comments to yourself please! It probably was a rough morning trying to get the kiddos to school on time and the brows being “on fleek” was not my top priority.
This story was not shared to elicit any sympathy for me. I share my experience mostly as a reminder that EVERYONE is dealing with……. SOMETHING; struggling with their own issues, each in their own way. You may never even notice that someone close to you is struggling. You may not even admit when you are having your own difficulties. It is generally frowned upon to admit a need to just STOP. Give yourself a little bit of grace on days when you are not 100%. You really do enough. You deserve to recharge. Extend that graciousness to others too. We all could use it these days.
Jenn Miele Leslie lives in Woodbridge, CT with her husband, three kids ages 8, 10 and 15 and two bulldogs who likes to fart and snore. Originally from Long Island, N.Y. (yes, that IS how you say it – if you’re from there you just understand) she misses being able to find a decent bagel or breakfast sandwich. Once an Art Therapist specializing in working with adults with various developmental disabilities, Jenn now spends her time shuttling her minions to: school; playdates; dance classes and competitions; occupational therapy; coding classes; and what feels like a million additional places, on a daily basis. In her occasional down time, Jenn enjoys photography, painting and an iTunes playlist that boasts way too many 90’s alternative songs.