When you’re chronically ill your daily routine is not the same as everyone else. If you have a 10 o’clock class you get up at 7:30 because on top of getting dressed, and getting out of the house, you have to do breathing treatments and suction mucus out of your lungs because you can’t cough it up yourself. You can’t skip breakfast because it takes more energy to get stuff done in the day, you can’t catch the 9:30 bus, you have to catch the 9 o’clock bus because it takes you half an hour to walk from the bus stop to your class. On top of all of this, you are still trying to be a normal university student by managing school and friends. In this shuffle occasionally the health treatments fall through the cracks. You know that no matter what you do, you will still get sick, you have a bad reaction to the medication in the breathing treatments which makes you so shaky that it’s hard to stand. So you have to decide, do you want to breathe today or do you want to walk. This is even harder when your university campus isn’t accessible to physical disabilities so you know a flight of stair is included in your day. Do you want to breathe or do you want to walk? You have to decide.
Most days you decide that you need to be able to walk, so you skip the breathing treatments. You know you shouldn’t, but you want to be normal. If you skip the breathing treatment you can get out of bed at 7:45 or 8 and still make the bus like everyone else. If you skip the breathing treatments you can walk without holding onto anything if you skip it you can do a flight of stairs without having to sit down halfway up if you skip it your foot doesn’t shake all day. You can function properly.
Then you go to the doctor and they want a chest x-ray because you’re making a weird noise. A noise you’ve become deaf to because you’ve always made that noise, only when you’re sick but still, they see a little fluid in your lungs because you were recently sick. They tell you that you aren’t taking good enough care of yourself and that you need to do Chest Physio Therapy every day, you know it’s fruitless. You know that no matter what you do that you’ll be right back here in a month.
Being told to take better care of yourself means something completely different to someone who is chronically ill. It’s a slap in the face. It means we are failing at something that we already are failing at, it means that we had to make an impossible choice, clear our lungs or standing up, and our doctor doesn’t know. So we replace our breathing treatments with something that adds 1 minute to your morning instead of 12, it also doesn’t give you any weird reactions. None the less, we are right back there a month later.
We are always told we aren’t doing enough, but doctors rarely see past your health status, they don’t see what we are doing. We are living our lives the best we can with a chronic illness. We go to school, we hold jobs, we have families and friends and because we “don’t take good enough care of ourselves” we have a life. If we did everything our doctors said we would be completely healthy and never get yelled at, but we wouldn’t have a life. What’s a life without living? I’ve lived in hospitals it’s not fun, so I’m living while I have the chance. Sorry if that means cutting one thing out of my day to fit something else in.
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Why I hate going to public pools and the beach.
Spring and Such