Wednesday, June 13, 2012

Being ill is a full-time job

Last Friday was one of those days I needed an on-call aide. I had two errands I had to run. I woke up with a migraine, muscles not moving well, my head was really foggy, and I was too tired to be safe driving! One errand could potentially have waited, but as long as one couldn't I felt like I might as well do the other too. I had to go to HMC to manually pick up my Fentanyl prescription because I was running out Friday and couldn't go all weekend without pain meds. I had to be back by four to start my TPN and I had to get my other fluids going before I left.

Being chronically ill is a lot more work than people think. People think we enjoy laying around sleeping or doing other stuff all day, getting paid to not work (I work my butt off, just don't paid), but don't realize that everything we do takes so much energy and it's A LOT of work to be sick. It's hard to even make it to the bathroom sometimes and getting dressed often takes several phases with a lot of rest in between the shirt and the pants. It takes so much work to do the simplest things. There's meds to keep up with, IV fluids to hook up to, TPN to run every single night, doctors appointments, dealing with the whole medical system, insurance issues, phone calls all the time to docs, pharmacies, home health, paperwork to sign and mail back in. Most of the time we are even too tired to pick up the phone and make these calls. Some days I can barely talk. We don't just lay around doing nothing. It's A LOT of work to try to be as healthy as possible and everything takes at least twice as much energy...usually even more. Getting a shower is an overwhelming thought most days and all I want to do when done is take a nap! We work hard and on top of that, we have to fight a lot of tough emotions, fears, frustrations, and challenges that come with this.

We are not lazy. We work really hard, it's just in a different way than most people. But we work JUST as hard, or even harder. We don't get a vacation either. It's a 24/7/365 job. We can't call in sick either. I have to hook up to my fluids and TPN every single day no matter how I feel or how much energy it takes. I have to take my meds all day long regardless of how nauseous I may be or if I am in the middle of a nap. There is no break, there is no choice.

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