I’m not one of the lifers. My chronic conditions took over less than a decade ago. While I had experienced some symptoms earlier, my overwhelming and life-altering issues only developed in my late twenties. Of course, any amount of time with severe pain and symptoms feels like an eternity. Looking back to days of physical … Continue reading Welcome to the bumpiest road
I’ve written about the weight of sharing one’s chronic medical conditions for people in the public eye. I’ve also touched on explaining illness in all types of relationships. How does that look? What is your responsibility to share the issues and symptoms that you face? How much and how loud do you go? Who do you … Continue reading Is it a secret?
You know the pain. The mental and emotional annihilation. When your stomach drops and your heart tightens. It happens to everyone. Multiple times. Throughout your life, that feeling will waver and heighten over and over again. It will occur in friendships, romances, with peers, in the workplace, around strangers, and every other type of setting … Continue reading Emotional destruction
I’ve lost count of the number of prescription medications that I have tried. At last count, the number was creeping into the upper 50s. Yep. From the time of my first, body-destroying migraine until today, I have tried over fifty separate pharmaceutical drugs. I’m not counting the intravenous or in-hospital abortive meds. Just the pills, … Continue reading What’s the alternative?
When the world seems to be in utter chaos, how do we get the care that we need? Well, our planet has never been perfect and our lives have never been “normal”. We have always been outside the model of average and strapped in for a turbulent ride. Now that lights shinning on general themes … Continue reading Care in the upside down
Someone recently asked me how long ago my medical issues started. With a blank stare and stuttered excuse, I realized that I couldn’t answer that question accurately. I began to wonder if I was lacking as a proactive patient. Here's the thing, I’m not sure that I want to have a perfect schedule and exact … Continue reading Trickiness of time
It seems fake. I mean, whose legs aren’t restless? Is there anyone who can sit or lay comfortably in one position without needing to shift? Everyone needs to move from time to time. But, it turns out that Restless Leg Syndrome is a just a terrible name for a real disorder. I think it falls … Continue reading Coming around
It’s the more unspoken part of dealing with chronic illness. If being able to get out of bed or going to a doctor’s appointment is a big win, taking care of your daily hygiene needs makes up all the tiny victories in between. It seems so simple. Just take a few minutes to clean yourself … Continue reading Slogging through hygiene
You aren’t lazy. Nothing about coping with chronic illness and pain equates to slothfulness. Each moment that you decide to stay in the fight is brave and exhausting. Every second that you don’t give over to the ease of eternal sleep shows enormous strength and fortitude. You are amazing and your struggle is acknowledged by … Continue reading Life saving distractions
I just assumed that every person became light headed when they stood for an extended period of time. Standing up quickly or being overly active would always leave me with a spinning room and short light show. It was something I naturally compensated for through the years. I figured that everyone lived with these daily … Continue reading I’m just girl – Diagnosing part 3 (Postural Orthostatic Tachycardia Syndrome)