Tagged Chronic disease

Achoo!

Dealing with chronic disease forces you to expect the unexpected. New symptoms and weird manifestations of the disorders pop up all the time. Occasionally, a non-related medical issue will present and you have to figure out if it is truly a new symptom or a manifestation stemming from a previous condition. As you know, all those aches and pains that encapsulate chronic diseases show up in wildly diverse ways.  One of my daily symptoms is nausea. It can be severe or mild, but it is always there. Because of this, when I’m coming down with the flu or even food…

Life saving distractions

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 the millions of us who gear up to face each day. It is difficult to find distractions from pain and other loud symptoms. I often have to use multiple techniques at once. This might look like someone with an attention problem to an outsider. If…

I’m just girl – Diagnosing Part 3

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 sensations. After all, the human body is a weird machine.  No one in my family has much trust in modern medicine. From religious reasons to superstitious avoidance and general unease with the practice, I wasn’t brought up with doctor visits. The occasional trip for stiches…

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…

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…