Tagged Chronic disease

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…

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…