Tagged Autonomic neuropathy

Coming around

It seems fake. I mean, whose legs aren’t restless? Is there anyone who can sit or lay comfortably in one position without needing to shift? Everyone needs to move from time to time. But, it turns out that Restless Leg Syndrome is a just a terrible name for a real disorder. I think it falls under the same name-fail as Chronic Fatigue Syndrome.  So, RLS is an actual condition and I have it. It started slowly and developed as a branch off of my Autonomic Small Fiber Neuropathy symptoms. I want to discuss what RLS truly feels like. The commercials…

Slogging through hygiene

It’s the more unspoken part of dealing with chronic illness. If being able to get out of bed or going to a doctor’s appointment is a big win, taking care of your daily hygiene needs makes up all the tiny victories in between. It seems so simple. Just take a few minutes to clean yourself and your surroundings. All you need to do is brush your teeth, shower, shave, wash your hair, moisturize, trim your nails, change your clothes, etc. But, simplicity rarely exists in our realities. Surviving the microseconds is where we live. When everything hurts, maintaining the squishy…

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…

Opioids and Judgy McJudgerson

Take a deep breath. This is going to be one of the most polarizing issues that we discuss here. It’s also going to be a long post. However, no matter how long the column is it won’t be long or detailed enough. Pain and pain management is a very complicated discussion. It is intensely personal and biased, even when science is discussed.   My position is different from most people. The way I think about pain has changed over time. It can probably be split into three categories: before illness, start of illness, and chronic sufferer.  BEFORE: I was anti-pain medication.…

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…

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,…

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…

When they ask, “What’s wrong with you?”

My officially diagnosed conditions and their medical definitions are as follows:   Ehlers-Danlos Syndrome (EDS) – Hypermobility type: “A group of disorders that affect connective tissues supporting the skin, bones, blood vessels, and many other organs and tissues. Defects in connective tissues cause the signs and symptoms of these conditions, which range from mildly loose joints to life-threatening complications”. National Institutes of Health Postural Orthostatic Tachycardia Syndrome (POTS): “Postural orthostatic tachycardia syndrome is a condition that affects circulation. It involves the autonomic nervous system and sympathetic nervous system”. Cleveland Clinic Gastroparesis: “A disorder that slows or stops the movement of food from your stomach…