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.…

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…

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…