I often say that my disabilities are my full time job. But I don’t think most people fully understand how true that statement is. It is EXHAUSTING being chronically ill. Just organizing all of this on my floor to get a picture made me cry because of how overwhelmed I feel. To help you understand, here’s an outline of what my day always consists of due to chronic illness:
I can’t drive for the first hour or two after waking up because my nighttime meds give me a medication hangover, and it’s dangerous to do things like lift heavy objects or drive until my meds wear off. This happens no matter how much I sleep the night before.
Before I can even get out of bed in the morning, I have a series of exercises I need to do to make sure that there has been no excess pooling of blood in my feet or in my heart, so that when I stand up for the first time I do not immediately pass out. I run through a series of breathing exercises too and slowly sit up, wait a few minutes, and then stand up.
If I’m going to be on my feet for any period of time during the day I put on my compression stockings that either go up to my knee or reach all the way up to my thigh (depending upon how much activity I’ll be doing and how I’m feeling). These ensure that the blood pools in my feet less and my blood has an easier time returning to my heart after reaching my feet, which helps me hopefully pass out less during the day. I also have compression garments for my arms and hands.
I apply a prescription cream to any of the areas of my body that need it and take my pain meds.
I also will potentially put on a variety of braces that support my ankles, knees, fingers, wrists, elbows, and hips (some of these I also carry around in my purse). I might also opt to apply kinesiology tape or athletic tape to my various joints.
In addition, I have two different air filtration masks so if I’m anywhere that has strong airborne chemicals, or someone who is a smoker or vaper, or I am someplace that has used any sort of strong chemical recently, I need to put on the mask to protect the blood vessels in my lungs from getting irritated and burst, therefore filling my lungs with blood. It’s not pretty.
Within the first few hours of my day I have to take my pain meds as well as a medication for my dysautonomia. I have one bottle by my bedside and one bottle that I have in my purse that I take everywhere with me so that I will always have medication on me when I need it.
For my first meal of the day I have a medication that I have to take when I eat (again, always have a bottle in my purse).
Around early evening I have to take my dysautonomia meds and pain meds again, as well as my stomach medication when I eat dinner.
At bedtime I take my vitals, such as my blood pressure and temperature, and record them for my doctors. I have a number of physical therapy exercises that go from my ankles all the way up to my neck and everywhere in between, and these exercises usually take about an hour to complete. Ideally I do these exercises at some point during the day, but I’m not always the best at remembering.
To continue my bedtime routine I take 10 different prescription medications, as well as prescription powders and creams. I also have prescription vitamins and iron.
I sit with ice packs, heating packs or my TENS unit to relieve pain. I have pain cream, pain patches and this really cool roll-on stuff that helps as well with pain. I have a massage tool to massage certain joints to prevent a buildup of tension because of my connective tissue disorder.
I have wrist and hand braces that I have to wear at night, and I sleep with my torso at a 30 degree angle to prevent the blood from pooling in my heart while I sleep. I have a designated barf bucket that lives next to my head (and I carry barf bags with me everywhere I go in case my stomach decides to rebel).
I have a number of “as needed” medications, some of which are over the counter, like Tums, Excedrin Migraine and laxatives. I have prescription as needed medications that I take as my symptoms appear during flares and an inhaler.
I have forearm crutches, a Rollator walker and a folding cane that I keep in my car and use whichever ones the situation calls for. At home I have crutches and a walker to use around the house.
The bag I carry with me everywhere is a little obnoxious. I have to carry around a gallon Ziploc bag filled with prescription pills creams and over the counter medication because my illnesses don’t disappear when I’m out and about, and I can find myself in some very sticky situations without my meds. Like I mentioned before, I have compression garments, air filter masks, braces, etc that live in the bag. Embarrassingly, I also carry flushable wipes with me in case I need them.
I pass out at least once or twice a day, and there are a handful of times when I regained consciousness that I have a seizure. There are days where my brain feels like it forgets how to walk and I genuinely have to put in an immense amount of effort to remember how to put one foot in front of the other. I have to watch everything I eat because my stomach is paralyzed.
I have multiple doctors appointments every week, I’m in frequent communication with my insurance company, and I do an immense amount of rehab in the pool and at the gym as well.
I have to spend hours every day focused on taking care of my illnesses so that they do not control me. I would give anything to be able to work a full-time job or to have been able to go to college, but those are not the cards I was dealt. I have to do everything while in constant pain, fatigue, dizziness, and fear that I will get “punched in the gut by my illnesses” at any moment (ie losing consciousness and collapsing in public, or spewing vomit).
On top of that I deal with severe mental illnesses (I’m mentally ill enough that I lived in one of the world’s premier mental hospitals)… I’m not only trapped in my body, but I’m trapped in my mind as well.
It is exhausting being me, and I wouldn’t wish this life on anyone.
Ungluing Stigma 