Just a little movement

I didn’t realize that I was athletic until I got sick. Playing outside everyday and having sports integrated into my life was something I took for granted. I grew up in a rural place where there weren’t professional or academic sports teams. Everyone was just always outside doing activities. My dad grew up playing organized sports so our weekend, holiday, and after school activities always included tennis, volleyball, swimming, surfing, fishing, baseball, basketball, etc. As I grew older, my sports hobbies took a backseat to everything else. But, I could count on my athleticism to make me comfortable and useful…

Try it out. The long list

There isn’t much that can be done to dramatically ease chronic pain. The medical community calls it “intractable” and “difficult”. The same can be said for many chronic disease symptoms. While we have treatments that show promise and medications that reduce severity, actual life-changing solutions are rare.  It is hard not to stew in frustration and depression when you deal with constant broken body issues. Every single moment reminds you why you are different and how you don’t function. Due to that incessant aggravation, I’ve compiled a list of things I use and do to make my life just a…

Hospital PTSD

Post-traumatic stress disorder (PTSD) is not exclusively a wartime condition. There are innumerable events that can cause the disorder. Personality traits and emotional leanings also contribute to the likelihood of developing PTSD. For centuries, trauma was treated as a momentary cut instead of a deep scar. Today, we realize that lifelong mental distress can be caused by even a single traumatic event.  It may seem counterintuitive to claim that medical spaces and hospitals in particular can cause PTSD. Unfortunately, it is true. The process of recovering from a hospital visit is lengthy and multifaceted. Being out of control, having your…

When I just can’t

It isn’t very often that I am absolutely and completely useless. I can usually pull myself together enough to do a chore or work on something creative. In fact, the act of completing a small goal helps bolster self-worth and a positive mental state. However, today was an empty day. I was physically, mentally, and emotionally drained of function. With chronic illnesses, there is a lot of recovery time for simple tasks. I’ve written about it before and it will continue to be a theme in my posts because it’s important to acknowledge the difference between recovery and laziness. There…

Intimacy for the broken

In a vast library of films, I have yet to see an honest depiction of chronic illness and relationships. There are moments that pop up in television series and informative singular tales in documentaries, but they all lack the truth and complexities of navigating intimacy while dealing with a daily disease.  I use a broad classification of relationships. This term includes acquaintances, friends, lovers, partners, spouses, and family. It fits anyone with whom I have shared a connection or meaningful moments in time. Over the years, it has become clear just how important my health is when dealing with all…

Zebra looking for an umbrella

Having more than one disease complicates everything. Most of those diseases being rare and understudied turn those complications into catastrophes. Doctors don’t know what to do with you and they truly don’t care to try. When you are already suffering from a mystery, the last thing you want is for your doctor to quit helping. Sometimes that dismissal seals a sufferers decision to give up. It reinforces their anxieties and amplifies their pain. Along with hope, their motivation for life disappears.  I asked for help everywhere. At first, I didn’t know what was happening to my body. My early symptoms…

Chasing zzzzzzzzz

I dream of sleep. Laying my head on a pillow, sinking into a pile of blankets or sliding under a crisp cool sheet, taking a slow deep breath and closing my eyes to quickly fade into slumber. Freed from my physical self, my mind drifting over thoughts I didn’t know I had and will never understand. Only waking when my body has been replenished and my head is clear of fog.  That delicious fantasy is far from my sleep reality. With chronic disease and pain, comes difficulty sleeping. It doesn’t matter if you are so fatigued that you can’t lift…

Not theirs to break

Lately, there has been a lot of buzz about treating pain with pain. From studies about the psychology of pain to stories about BDSM as a coping mechanism for living with disease, these articles are written by non sufferers and seem lacking in patient perspectives.  The concept of treating pain with pain is almost instinctual. For instance, we tend to soothe a sore muscle with rubbing, smacking a bug bite that won’t stop itching, or using the distractive method of pinching your arm when your foot hurts. These techniques absolutely work, temporarily. They overload the nervous system and your brain…

I’m just a girl – Diagnosing part 1

I was 18 years old and living in the American south. It was a new adventure after moving to the U.S just a few years prior. Being eighteen and still adjusting to a new culture, my life was a combination of amazing and incredibly stressful. It was a time before social media. The Internet was not a daily thing, a much simpler time in that regard. That lack of access came with its benefits but also left a lot of us lacking easy access to quality information.   About a year into my southern life, I began not feeling well. It…

A walk too far

I am currently staying in a place with good public transportation (by American standards). Not only are the metro stations abundant, the lines are also timely and run across the whole city. There is a stop half a block from my home that takes me to large grocery stores, banks, and other errand locations. Before planning my time here, I had to carefully analyze this urban layout. It had to meet my mobility requirements and provide enough amenities so that I could receive timely deliveries when I couldn’t leave the house.  This overly planned style is not how I use…