My story – Chloe
The simplicity of it all swims around: wake up, complete your tasks, go to sleep, and again and again. Day after day. But when it comes down to it, your body has something to say. It looks like you’ll be taking it easy today. What you call a luxury, you’d have to press your eyelids tight together to see. With every inkling of energy you have remaining, the swirls of joy return once again. One where the checklists are completed and the conversations leave giggles smeared across our sore faces. The vague aroma of lavender sweetens your lungs with the sparks of stability and security, never relenting to even the boldest of threats. Open your eyes and the fog hangs over you still. The feeling of your heart sulking deeper shakes your core as you yearn to wake up in the world behind your eyes.
The reality is, the sky has changed hue, the ground has opened up, everything you once knew of was flipped upside down. Your pride has suffered mass casualties since the pain rose, symptoms became unbearable, you lost the job, the relationship crumbled, friendships dissipated, just like that. The tides turned seemingly against you.
Captured by the immediate dread, the awareness that your body is not in homeostasis, and may never be again. And of course, there’s the norm of opening your eyes, feeling in control of your body and ready to attack the day. It seems far-fetched at times. I’ve heard of a midlife crisis, and even a quarter life crisis, but I’m finding my way through the core of a quarter life chronic crisis.
With every new symptom and diagnosis, my life looks unlike what I’d ever imagine.
I have been experiencing chronic pain for over five years, and long ago I gave up the idea of living pain-free. Of course, I dream of it (don’t we all!), but I had to switch my approach to be more attainable for the short-term. With hypermobile Ehlers-Danlos Syndrome, my joints require movement to keep them strong, preventing pain and subluxations. Having difficulty with simple activities makes it incredibly difficult to balance pain with mobility.
On top of hEDS, I have been diagnosed with several of its comorbidities such as Vasovagal Syncope, Scoliosis, GERD (Gastroesophageal reflux disease), PFD (Pelvic Floor Dysfunction), and even more yet to be diagnosed. With not always knowing when symptoms may present themselves, the daily challenge of being a full-time adult is unattainable. So, I don’t make it a goal. And that’s fine, I know I will thrive as a human better if I feel better in my own body, going at my pace. I should be able to take a rest day suddenly, because my body deserves and needs the rest. Anyone deserves that. Bodies work best when they feel the best.
I have some unfortunate news. Chronic pain isn’t a one day rest and reset. I wish it worked like that. We experience hangovers, but not the typical kind. The hangover from pushing your body too much, burnt out of energy and definitely sensing the height of the pain. It carries over into the next day, maybe multiple days, or may lead into a full on flare-up. Taking a day off won’t be a cure-all. It may be necessary, but there are no promises about feeling much better after. Most chronically ill individuals desire to do more than their bodies can allow. It takes a large mentality shift to reframe one’s abilities. Waking up, my first thought is always how much pain I’m in.
I want to stay and just distract myself from the pain, but I know I need to focus on lowering that pain if I want to be successful with the effort I put into my day. Time to open my chronic illness toolbox.
All the things I have gathered throughout my experiences push me to be consistent with preventing or treating my symptoms. The physical therapy exercises, light stretching, mobility aids, and many braces, but also to take care of my hunger and full bladder. Regardless, I’ve learned that there is always something. One thing triggers another so easily with a chronic illness. Symptoms are unavoidable and unpredictable at times, but minimizing pain can change the quality of my day. If I have tried everything in my toolbox to alleviate it, I have to choose to either push pain and symptoms aside if I am going to accomplish anything, or take the rest my body needs. That choice isn’t always an easy one either. The balance between your physical self and your mentality is sometimes one of the biggest challenges to continue overcoming. It’s a lot of balancing to do, truly. And to keep it up we must continue to walk on the balance beam, on and on.
I should have a tally chart with years worth of days tallied off. You don’t just live through the years; you feel through each day. Each tally scratch of irritation turns to annoyance, then stubbornness, then straight up pain. If you can’t feel anything else besides grip onto the emotions the pain is causing, will there ever be anything besides pain again? Anxiety plays a large role in my day-to-day life as a chronically ill young adult. An adult would be able to do more than I’m able, and the guilt attaches onto my thoughts when I frequently face challenges with ‘adulting’. But even so, I remember that most adults don’t have trouble standing in the shower, washing their hair, chewing their food, walking, standing, or even sitting. How does one function under the influence of chronic pain? Disassociation, meditation, medication and rumination. The prime ensemble that performs the show.
Learning how to shift from disassociating to directing those thoughts somewhere is a difficult step to take. Taking persistent negative energy from the pain and throwing it right back to the pain, sends it in loops until disassociation freezes you up in its own sense of comfort. A warm hug to carve away the pain, suddenly. But it isn’t any easier letting go from the hug. I spent my fair share of time locked in on the dreary grey walls, an empty slate to take into sight.
The emptiness around it feels okay at first, digging out what you didn’t want to reside in you. The direction the grey wall takes you ends up on the other side of your thoughts. Not a great place. Instead, directing the thoughts to what fills your cup, something you’re interested in learning about, an idea you have, or the joys that put a smile on your face when you least expect it, will be a better guide for you. It is sometimes hard to sense any progress is being made when there are so many layers to it, like untangling your basket of chargers. Even after they’re taken apart, it’s time to charge up.
Meditation comes difficult at times, still. It isn’t always what is helpful, and it takes awareness of what I need in that moment to get me one step further. Working out other emotional needs first to filter my thoughts and establish a clearer working space for me has a bigger impact on me than I realize. Anxious thoughts can be compressing, and depressive feelings force themselves into my brittle body. Establishing a clearer sense of awareness surrounding myself as a whole person was more important, not just the labels of my diagnoses. The whole person I know has emotions, valid, true feelings. I try to pick apart each perceivable sentiment to speak with it face to face rather than leave it behind the door. It won’t always make sense during the moment, but over time, the growth will show itself. Emotions stay stored within until it’s let out and dealt with.
Sure, placing a name and reason for the emotion doesn’t fix everything for those of us with a chronic illness. However, by articulating experiences around feelings such as frustration, sadness, or fear, it can help us develop a deeper understanding of our emotional states to create the sense of control in our lives we’ve been lacking. It allows us to set realistic expectations for our desired outcomes, guiding us toward a more fulfilling quality of life.
It’s true, I miss the ease, the flow the day brought me. I’d wake up to my alarm, be annoyed about the weather, enter my golden chariot, and off we go. Lots has changed since then. I see my goals get swallowed by the diagnoses and symptoms. The enemy of comparison is difficult to get past. Especially when what you are comparing is the same being. You vs. you. Only time stands in between, to understand fully and move on from. The comparison doesn’t heal though. It steals the energy that you need in order to be the full version of yourself. Pain makes it that much more challenging. Let the clouds part for you, let the sun slip back to paint your hair. The exasperating journey our diagnoses take us on doesn’t deserve to dull the rest of us.