He Gave Me The CURE!!! (SARCASM)

water drop, sarcastic blog, cure for chronic illness

I casually ran into a family friend yesterday when I was out with my mom. He said all the normal things you say when you see a family friend… How are you, when do you leave for college, are you excited, what college did you decide on, etc…

(Side note: the college I chose is known for it’s biking and hiking trails, snowboarding, skiing, and other active things I unfortunately cannot partake in because of my chronic illnesses.)

So, when I reminded him of which college I will be attending in the fall, he strongly recommended, “Oh, you’ll have fun there, get out and do stuff! Hike!” To which I politely reminded, I have a heart condition, I can’t go hiking. (Actually, it’s Postural Orthostatic Tachycardia Syndrome {and other things}, but even though he is a paramedic, I knew he wouldn’t know that that was.) 

Then he proceeded to say, “what heart condition? Don’t let that stop you.”

Oh, I'm a pacifist alright ... I'm about to pass a fist across your face. Angry, ignorant, meme, textpost, punch, face,

At this point, I’m looking at my mom (who has chronic illnesses, too.) and I’m just dumbfounded. So is she.

 

 

I could tell my mom was 1) upset with him, 2) trying to be as sweet and kind as possible, and 3) expecting me to blow up at any second. I kept my cool on the outside, but on the inside I was absolutely furious already, and we haven’t even gotten to the good part yet.

 

My wonderful mom said, “she will do things in college, just not hiking, because she can’t. She has orthostatic intolerance and low blood volume and-”   *HE CUT HER OFF* to say…

“Just cook in cast iron pans and drink water, you’ll be fine. Don’t let that stop you.”

At this point I’m looking around like, is anybody hearing this?????

This is BREAKING NEWS.

How did my General Practitioner, Cardiologist, Gastroenterologist, Endocrinologist, AND Naturopath never suggest this amazing cure??!!?

If I had only known that was all I had to do to be cured of all ailments, I never would’ve gotten a handicap placard for my car! Or spent hundreds of dollars on various doctor appointments and medications! Where has he been all this time??? He should write a BOOK! “The Cure For All Illnesses!”

me when people are ignorant picture, angry lion roar
This was me right after we walked away from this conversation.

Obviously that was sarcasm. A family friend, who is a paramedic, made me very upset, and I wanted to vent about it. This was not the first time I’ve gotten comments like this, but this one just seemed particularly ridiculous to me. He is a paramedic!!

Okay, rant over. Comment below the worst comment you’ve ever gotten about your illness!

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Chronic Illness In High School

 

As a recent high school graduate, here are some tips for surviving high school with chronic illness. I plan to dive deeper into many of these topics individually at some point, so sign up for my email list HERE so you never miss a post! 

 

Get a 504/whatever accommodation paperwork your school uses.

I got a 504 which is basically paperwork with a certain office of the school so that the administration knows what’s going on and can make whatever accommodations you need. For me, I never had to worry about having too many absences and I got extensions/exemptions on a few assignments. For example, my astronomy class required students to attend a “star party” which was basically an event where we had to drive 30 minutes away to a middle school and look in telescopes at stars for about an hour or more. I was unable to attend one of the quarters so I got exempted from it.

 

Don’t associate with people (outside of class) who refuse to make any sort of effort to understand your illness.

During class, talk to the people around you; it makes class more fun. But I personally found it extremely difficult to be around that type of person outside of school. We all have to deal with the people who use the classic lines like, “you don’t look sick!” Or, “just do some yoga, you’ll feel better soon!” But we do not have to invite them into our personal lives. And we shouldn’t.

 

Become okay with saying no.

This was a big one for me. I always wanted to go out and do whatever my friends were doing, but overdoing it always resulted in days of recuperating, and although it may be worth it once in awhile, you have to plan ahead. If you have a giant project due Monday, maybe you shouldn’t go out on Saturday night because you won’t feel good enough to do the work on Sunday if you’re out late. (At least that’s how it is for me.) I plan to write more about this topic in the future, so make sure to sign up for my email list HERE so you don’t miss any new posts!

 

Organization is KEY to success in school for anyone, ill or not.

I kept tidy binders every year of school and it saved me many times. I use one inch binders (2-3 classes per binder) and pocket divider tabs labeled things like “English Bellwork” or “math homework” and I would put everything in the pocket of the tab and I would always know exactly where everything was! It worked SO WELL. You have to figure out what works best for you, but you MUST have organization to keep you sane. Losing assignments is just not something we have the bandwidth for.

 

Sleep!!!

I’m sure you already have a good sleep schedule down by now, but don’t think, “well, I’m in high school now, I should stay up late and not get a good amount of sleep because that’s cool!” No, it’s not cool. I religiously got 8-9 hrs of sleep each night, and it kept me as healthy as an ill person can be. And if not for all four years, by the time junior or senior year rolls around, everyone will be JEALOUS. Everyone else will be chugging coffees to stay awake in class, and you’ll be bragging about your amazing 9 hours of blissful sleep. (One more shameless self promotion – Tips For Better Sleep)

 

Participate in whatever you can/want to participate in.

I’ve always had very limited energy to do extracurricular stuff, but I played in the orchestra during school all four years, and played in a youth symphony that rehearsed in the evening for two years. Don’t do too much, but try to do something. Art club, writing club, music, theater, figure out your thing. You may not find it in high school, but try some things that you can physically handle and see what you enjoy.

 

Find your people.

My people are my mom and my boyfriend. I’ve had other good friends along the way, but my mom has always been the best support in my life. I’ve had two different boyfriends in high school and during their respective years, they were good support too. (The current one more so than the previous one.) Knowing who to trust and lean on is very important. You need to find your support system and stick with them. I already said this, but make sure they’re willing to make an effort to understand your illness(es). Having people who understand that you want to hang out with them, but you can’t walk the mall, is important. Have friends that are willing to come over and drink smoothies and watch old grey’s anatomy episodes on Netflix with you if that’s what your body can tolerate. (I’m not even sorry, check out this post! Alternative Socializing For Spoonies)

 

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12 Tips For Better Sleep

Sleep is one of the most important things for every person, but ESPECIALLY for Spoonies. Here are some tips to help you fall asleep faster, stay asleep better, and wake up feeling more refreshed!

  • Stick to a good sleep schedule
    • The better you stay on a schedule, the more your body will understand when it’s supposed to sleep.
  • Ditch the screens
    • 30-60 minutes before you plan to go to sleep, do something that doesn’t involve backlit-ness. (I’m guilty of this one, I’m always on my phone in bed at night… don’t do it!)
  • Exercise
    • This one is especially tough for spoonies, but there are practically endless reason why this is a good idea… sorry about it.
  • Essential Oils
    • Several oils are said to have relaxing effects that can help you sleep.

  • Temperature Control
    • Make sure your room is a comfortable temperature for you.

 

  • Timed Heating Pad
      • For me, a heating pad on my stomach at night helps a ton. If I have any stomach ache at all, the heating pad helps it go away. Mine has a two-hour shut off timer so I don’t have to worry about falling asleep with it on and causing any issues.

     

  • Have a Bedtime Routine/Ritual
    • This can help you stay off your screens before bed. Some ideas could be meditation, yoga, prayer, read a book, write poetry, etc. Anything away from bright lights and noise.
  • Humidifier
    • I only use one when I’m congested, but I should probably always use one. They are totally awesome.
  • White Noise Machine
    • I don’t personally need one, but my family all swears by them. If you’re a light sleeper, these can really help a lot.
  • Blackout Curtains
    • If you find yourself waking up when the sun comes up even though you’d love to get a couple extra hours of sleep, keep the light out with blackout curtains or a sleep mask.
  • Fuzzy Socks
    • I personally can’t sleep without socks on. I wear regular knee high socks generally. But fuzzy socks are so freaking comfy and cozy, how could you NOT sleep well while wearing them?!
  • Paint Your Room
    • If plausible, paint your walls a calming color with a matte finish, not gloss.

 

There you have it! Some of my favorite ways to get a good night’s sleep.

Comment down below with your favorite strategy for better sleep, and your favorite Essential Oils!

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