So many terrible things happen when you have a chronic illness. There are hours, sometimes even weeks and months, which go by before a calm spell hits. At that time, with the chaos of survival temporarily quieted, we have a chance to appreciate the lessons we learned during the bad days. Those small servings of good stuff can help us find reasons to push through and keep fighting. The primary lesson learned from dealing with a chronic illness is patience. It is inevitable. You can only push yourself so hard when your body is broken. Developing patience with yourself is…
For the bent, broken, and busted bodies in this world
Losing my face
It would be a lie to say that how I look doesn’t matter. Pretending that we aren’t all judged immediately through passing glances and in-person meetings. Claiming that pictures aren’t scanned by thousands of eyes searching for every perfection and, more eagerly, every flaw. I know this. Everyone knows this. It’s a world crammed with warring messages, “Everybody is perfect!” and “Plastic surgery is at an all-time high!” “Love your body.” and “Eat less. Exercise more.” You are told that you will never look good enough, but you pretend that you think you are perfect. Fix your face with filters,…
A chaotic home
Life throws so many obstacles our way. It can be easy to get caught up in it all. This means sometimes forgetting your limitations and needs until you have passed a tipping point. Add to this the general difficulties of living with chronic symptoms in a chaotic home environment… maintaining your normal flies out the window. Many people with disabling medical conditions don’t get a lot of say in where they live. Some stay with family, others can manage independently, and some end up drifting between temporary shelters and homelessness. A few of us live with partners, friends, or strangers.…
Medical desperation
There are so many people with chronic and mysterious symptoms that the western world has developed show-and-tell entertainment around being sick. There are television shows, corporate websites, online series, and major news segments dedicated to showcasing all of our complications. Why do we engage with industries that make a profit off of our pain? Simple. We are desperate. With hundreds of thousands, even millions of people looking for cures to their long-term ailments, the appeal of sharing your problem with the world and getting a solution quickly is overwhelming. Maybe there is a doctor out there who is interested in…
I’m just a girl – Diagnosing part 2
I didn’t have headaches growing up. None of my family or friends suffered from migraines. People having world shaking headaches was not something I knew anything about. I assumed that all headaches could be solved with rest and over-the-counter medications. I had no idea that my entire life would change the day I felt my head split open. It was around 6pm on a weekday. I was at my parent’s house preparing for my next move. My folks had left earlier that day for a short vacation and I was going about my evening routine. Out of nowhere, I felt…
More than tired
Tiredness and fatigue are not the same things. There is a general perception that being fatigued means the same thing as being tired. When in fact, the two words describe very different experiences. Tiredness hits like a wave that you ride. You go from active and energized to a slowly building exhaustion that crests with a barrage of being tired. Tiredness can be fixed with different versions of repose. From needing some time to sit down to sleeping, it can often be alleviated with caffeine or a nap. You can rally your energy and complete tasks even when you are…
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…
