I’m just a girl – Diagnosing part 4 (Ehlers-Danlos Syndrome)

I’ve always been bendy. It’s a talent that helped me stand out in dance classes and yoga. As a kid, it also made for a great party trick and an easy way to impress my friends. Can anyone fit in that box? Me! Who can reach the toy behind the sofa? Me! Can anyone match the teacher’s plié and splits? Me!  Stretching also felt great and I found myself eager to spend time moving and testing the boundaries of my body’s flexibility. Sports that relied on balance and fluidity were ideal formats for both showing off and feeling powerful. I…

The day after

Two of my least favorite things to hear from doctors and non-sufferers is, “Pain is all in the head” and “Mind over matter”. There are strong truths in both statements. Modern science has proven that pain is an interpretation by the brain. It does not originate where we feel it. Science has also shown that thoughts, meditation, and prayer can alter and even negate physiological maladies. But here’s the catch, those truths do not make current pain and symptom sufferers feel better.  Friday was my day after. I consider the day after a massive recovery day. It’s a day that…

Care in the upside down

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 of inequality and vulnerability are burning brighter, those of us with chronic medical ailments have to balance empathy and anger with self-preservation and global caretaking.  It is a lot to ask. Simply trying to survive a worldwide pandemic was a heavy enough weight to bring…

Crushed by assumptions

People with bent and broken bodies are often presumed to be weak. We are thought to have the same mental and emotional deficits that our external selves display. This becomes even more complicated with invisible disabilities. Looking healthy but having physical challenges means that people assume laziness and lies on top of the incorrect belief that we are broken all the way through.  While the world reels from Covid-19, we’ve seen a number of arguments pop up explaining why visibly disabled people will be treated less effectively. They will be seen as already damaged. Their quality of life is assumed…

Bedknobs

I don’t currently live with anyone. Over the years I’ve lived alone and shared a home with roommates, friends, partners, and family. There are many positives about having a space to yourself. I think we can all understand the pleasures of finding out that your bustling or shared household is yours alone for a single day. Turning that momentary bliss into an extended reality is pretty great. Of course, there are negatives as well. Cohabitating brings love, interest, joy, and drama to even the quietest home and individualistic person. One of the most glaring issues of living alone as a…

Risk verses reward

Lately, #HighRiskCovid19 has been trending. It’s a small but effective way for those at high-risk of contracting Coronavirus to been seen as real. By posting a portrait and a quick rundown of their reasons for being vulnerable, social media users might absorb the reality that their world is full of physically compromised and invisibly ill individuals. Maybe if they see us, healthy people will be more aware of the importance of flattening the curve and social distancing. At least that’s the hope.  It has been interesting to watch the world adjust to our daily battle of…”Is _____ worth it?” The…

Virus light

I get sick a lot. Most of the time it is a simple cold. Occasionally, my body turns sniffles or a cough into bronchitis, strep throat, pneumonia, or some weird iteration of the flu. My immune system is compromised for an unknown reason. Like many people with chronic diseases, my body is angry and permanently fighting. Inflammation runs wild, allergy markers live at high levels, and constant new symptoms emerge. I’m at a high-risk for contagious diseases. Because of this, and my underlying conditions, I have a cautious life. Not by choice, of course, but by necessity. Since fevers pop…

Trickiness of time

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 history of my diseases. I have approximations, ideas, sporadic notes, and well-intentioned guesses alongside crystal clear bad days and dramatic episodes. There are certainly dates and times logged in hospitals and doctor’s offices. I could spend my time, effort, and money collecting all my medical…

Coming around

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 under the same name-fail as Chronic Fatigue Syndrome.  So, RLS is an actual condition and I have it. It started slowly and developed as a branch off of my Autonomic Small Fiber Neuropathy symptoms. I want to discuss what RLS truly feels like. The commercials…

Slogging through hygiene

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 and your surroundings. All you need to do is brush your teeth, shower, shave, wash your hair, moisturize, trim your nails, change your clothes, etc. But, simplicity rarely exists in our realities. Surviving the microseconds is where we live. When everything hurts, maintaining the squishy…