Tuesday, January 7, 2014

Chronic Illness Problems

(Note: This is meant to be sort of funny, a way of blowing off steam. But these are actual problems I encounter. Not everyone with chronic illness/invisible disabilities experiences the same problems, but a lot of people will probably relate to at least some of this.)

Need to nap because fatigue. Can’t sleep because pain.

End up rolling around and looking for a comfortable position until the alarm goes off.

Or you can’t let yourself nap because it will ruin your sleep cycle.

Sleep cycle: In pain, can’t sleep at night until total exhaustion takes over. Fall asleep at 5am. Barely get up in time for noon doctor appointment. Either fail to nap as above, or fall asleep for 6 hours and wake up confused with a headache at 9pm. Can’t fall asleep *again* because slept too much + pain. Cycle continues.

Having to write down every thought because they will be forgotten within half an hour otherwise. Unfortunately, always get best ideas while driving.

Or in the shower. Or while trying to sleep at 3am.

Multiple doctors confirm that you cannot work. Social Security Administration contacts these doctors, determines that you can work.

This has happened to me repeatedly, and I still don’t understand it.

Need to use drivey-cart (I think there’s a better name for these?) at grocery store due to fatigue. Have to stand up to reach items on shelves.

Afraid people will see you standing up and think you’re not really disabled and you shouldn’t be using the drivey cart.

When the drivey cart runs out of battery halfway through the store.

It appeared fully charged when you got it. I’m lucky enough to usually have other people shopping with me, but I would imagine some people are just stuck until an employee wanders by.

Lying down = back pain. Standing up = hip and foot pain. Sitting = knee pain.

Only comfortable position is on the couch with back against the armrest and legs stretched out. Not an ideal position for work or crafting, but you can watch Netflix and play with your tablet like a champion.

Forgetting what you’re doing.

Starting to write a blog post, then getting up to wake up your roommate, making coffee to entice roommate to get up, then remembering you made a green smoothie last night and you want your partner to try it, but there are no clean cups, so you wash cups, then start thinking about how it’s weird that a glass cup is called a “glass” and a plastic cup is called a “cup” even though they are functionally the same item made from different materials. When roommate gets up, remember that you wanted to ask him if your DS is in his room, and he says no, so you start looking for it in your own room, then you find your AA battery recharger so of course you have to look for the rechargeable batteries. Then you go in the living room to announce that you found the things and get distracted playing with the cats. Finally remember you were writing a blog post.

This is on a good day. On a bad day you don’t get out of bed until 5pm.

Having to explain to roommates why you either shower only twice a week because of pain and fatigue, or why you take multiple hot baths a day to relieve muscle pain.

I don’t have this problem with my current family, but you’d be surprised how annoyed some roommates can get just because you bathe twice a day.

Carrying a cane even though you don’t have foot or leg problems, just so people will recognize you as disabled.

To get a seat on public transport, or to get out of a car legally parked in an accessible parking space without people yelling at you because you don’t “look disabled.”

Having to do a 24-hour urine sample, TWICE, because somehow the lab messed up and didn’t do the correct tests on the first one.

This involves keeping a jug of your own urine in your refrigerator. I’m glad I don’t live with random roommates anymore, because THAT would be a fun one to explain.

And a series of meds-related problems:

Constantly having your medication changed around by different doctors, so that you have no baseline state to compare with to know if the new medications are working.

Need to eat regularly because blood sugar problems. Meds to regulate blood sugar cause nausea.

Being on so many meds you can’t tell what symptom is a side effect of what drug.

Or maybe it’s a new symptom of one of your illnesses.

Needing to educate friends and roommates about life-threatening illnesses that might arise due to your medications (such as lactic acidosis or serotonin syndrome.)

The classic can’t function without pain meds because pain, can’t function with pain meds because doped up.

And there are more things, but of course I can’t remember them because brain fog.

There’s more fun experiences here: http://chronicillnesscat.tumblr.com

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