Sometimes I wish people could take a walk in my shoes.
30 seconds. A minute. Five minutes. A day. A lifetime.
I don’t know how long some people would last. Probably not very long. What I deal with on a daily basis is difficult. It’s hard. It’s not for the narrow minded or weak-stomached. There’s a lot of nausea, a lot of dizzy spells, a lot of vomiting. There’s a lot of needles, a lot of alcohol swabbing, a lot of anti-emetics, and a lot of medications that just don’t do what they’re supposed to do.
There’s a lot of giving up, and a lot of lost hope.
People tell me that I’m inconvenient to their life. That my medical conditions are too much for them and they don’t want to deal with me. That I drag them down too much and it’s too much for them to have me in their lives.
I have feelings too. It hurts me, too. I’m still a human being, underneath the needles, the tape, the heart monitors, the insulin pump.
I. Am. Still. A. Person.
I don’t think people realize this, that their words and actions hurt me even more than they would a ‘normal’ person, especially because I try so hard to live a normal life. I try so hard to live my life around my TPN schedule, low blood sugars, POTS episodes, and more, that when I hear about someone being intolerant about my diseases and disorders, it crushes me to the core.
I’m still human.
Here’s what a typical day is for me:
I wake up after 12, usually, because my medication takes hours to work at night due to malabsorption issues. Sometimes they work quickly but other nights they can take 4+ hours. So I wake up after 12 – sometimes I can wake up at 5 pm. If I have class that day, I’ll set my alarm for early in the morning and see how I feel. My TPN usually ends between 8-10 AM, so I end the session and turn my pump off.
Usually I lay there for awhile, checking all of my social media, sending replies to people, unless I was woken up by a low blood sugar. I started keeping a bottle of juice by my bed so I don’t have to leave my bed to treat a low and risk hurting myself.
Then I get up for the bathroom. If it’s a good day, I’m not dizzy and I don’t crash into anything, and I can pee right away. But if my POTS symptoms are bad, I crash into walls and doors, and pieces of furniture, and it takes at least ten minutes to urinate due to bladder paralysis/retention. Then I get back in bed and read, or turn on my TV to Grey’s Anatomy on Netflix.
I’ve mentioned this before, but Grey’s Anatomy is my favorite show. In another post, I’ll talk about how I recently met Kate Walsh, the actress who played Addison for 9 years on Grey’s and Private Practice. Since becoming sick, I play a game (that’s really only funny for people with chronic illnesses) where we joke that if they mention a disease, disorder, test, or medication we’ve tried, have had, have, or are on, we take a shot of a common laxative called miralax, for shits and giggles. There’s actually an entire episode on gastroparesis, and we joke that we need to drink the entire bottle of powder.
Anyway. Usually I spent most of my day in bed watching Netflix. Literally. Until 2-3 am. Unless I have some sort of doctors appointment. This coming Monday I see my endocrinologist and my acupuncturist, which uses up spoons (check out The Spoon Theory right here! It’s vital to my existence) and will leave me exhausted.
Speaking of exhaustion, I generally nap once or twice a day. It’s pretty exhausting, doing nothing at all. Having chronic fatigue syndrome and not getting enough calories per day leaves me exhausted, so I take every chance I get to sleep, especially if I’ve gone to dance class that day. Just tonight I ate dinner (and kept it down somehow!) and needed a nap afterwards because eating exhausted me, if that’s even possible.
Then there’s so many things that factor into how I’m feeling. Blood sugar, temperature, intake of fluids, whether I’m bloated or not, the state of my digestive tract, how my stomach is emptying, my mood – literally anything and everything affects me how I feel on any given day. Even my dogs running in and out of my room, barking at me to be picked up and put in my bed, can throw me off.
If I had a choice my days would go so differently. I would get up and go to class, dance for 7 hours every day, go to all of my rehearsals, and I would be dancing in my dance company’s show next week. People wouldn’t feel inconvenienced by me, I wouldn’t have to rely on my parents for money and support, I would be able to move out of my mothers house, and I wouldn’t have to go on disability.
But my reality is different. I may never get married. I will never hold my own baby in my arms. I will never be able to live on my own because it’s too dangerous for me. I can’t work. Not now at least, and probably not in the future. I can’t earn my own money.
And I’m just one huge fucking inconvenience.
So take a walk in my shoes before you say something insensitive and rude.