Like. Lust. Love

Developing and maintaining a romantic relationship isn’t easy on the best of days. We all carry baggage and have expectations that we place on the other person. Even if someone’s situation is “perfect”, they will bring trauma and scars from their past, often subconsciously.  When it comes to handling romance with bent and broken bodies, the obstacles can feel unbeatable. But, they aren’t. Let’s start with dating. The word alone can cause a flood of anxiety. It’s a world where possible partners take a quick look at a picture, then swipe either approval or dismissal, before personalities are even brought up.…

Response required yesterday to a letter received today

We try, desperately, to meet and match deadlines set by the world. But, from work to leisure, time works differently for the broken. Our bodies’ needs outweigh our desires to keep up with a “normal” pace of life. On the truly terrible days, I can’t function. I can’t leave my bed. Every micro-movement, even just laying still, causes agony that doubles down on the internal pain radiating from my nerves, muscles, and joints. Hell-level migraine days see me curled into a ball crying, vomiting, and losing my will to live. There are moments where my stomach refuses even water and…

Suffering with responsibility

A few times a year, one or two celebrities pop up in the media because of a chronic pain related medical diagnosis. This type of sharing seems to be on the rise. There are good and bad aspects to pointing a spotlight on under-explained conditions through a celebrity lens. Often, the headlines focus on how the celebrity has suffered exhaustion and needs to reschedule or pause their current projects. An emphasis is placed on well wishes and very little if anything, is written about the amount of non-famous sufferers. A few general terms (mostly pain and fatigue) are put as…

Air travel

I use to travel, a lot. Multiple times a year, different countries, long trips and short trips, all of which I did with relative ease. I started traveling at a very young age, the simplicity and near-comfort that I felt with the entire airport routine (regardless of my location) has been a part of my identity for most of my life. From being the one who knew all the tips and tricks for getting through different airports quickly to feeling elation at landing in every new city, I reveled in the energy and unexpected adventures of frequent travel.  With my…

The good stuff

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…

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…