Spoonie College Life

When you are a spoonie, there are a lot of uphill battles.  One of them is getting an education.  If you are new to our blog, as an FYI we are both college students.  Currently, Nemo is on medical leave, and Tremors is currently enrolled.  We met each other in college, and discovered that we had some similar experiences when it comes to spoonie life as a college students.  

  1. Roommates / Living on Campus: We both live (/ lived) on campus for a variety of reasons.  One being that Tremors cannot drive, and Nemo did not want to deal with the commute.  Having a roommate can be a bit of a sticky situation.  When we were at the same college, we were both first given singles, but this year we decided to room together.  (We also share this apartment like dorm with two other girls)  Living alone in general can be kinda sad.  However, as a spoonie it may be a necessary evil.  There is no one to hide medications from, and no one to hide symptoms / side effects from.  But, if you can find the right roommate this can be solved.  We were able to get along so well not purely based on medical reasons, but because we are in fact quite similar.  Living on campus / with a roommate is not for everyone.  For us, it was the best, or only option.  Living together for us was the best option, and may not be for everyone.
  2. Loud neighbors: Living on campus we have had our share of loud neighbors.  As you can imagine, when you are having a bad flare, and want to sleep the neighbors partying all night is a bit of an annoyance to say the least.  It basically becomes us vs. them, and they tend to win a lot.  This is usually when our roommates start banging on their walls with the hope that they will catch on and be quiet.  Spoonie or not, 3 am wakeup calls are never very welcome here.  
  3. Flares: Flares / general bad days are killers.  You want to try so hard to get up, but it just isn’t going to happen.  Those are days when you just want people to understand and leave you alone.  (Which apparently is too much to ask for sometimes)  This is when (if you have a roommate) having an understanding roommate is great.  You are not alone, and you have someone looking out for you.  They may not totally understand what you are going through, but it can be close.
  4. Campus Bugs / Viruses: Something that happens when you live in a dorm is that there are a ton of viruses going around.  Naturally, the two of us catch EVERY SINGLE virus and bug that goes around.  So naturally, we adore this part of dorm life (not).  Because we just love getting sick.  Also, because what is a simple sniffle for our neighbors turns into a (at least) weeklong illness for us.  
  5. Professors: Sadly, not all professors understand life with a chronic illness.  They think they can watch some medical dramas on TV and be an expert.  HaHaHa.  Nemo has honestly had professors tell her that they understand what she is going through because they watch Grey’s Anatomy.  They could not be more wrong.  While some are absolutely amazing and understanding, others do not understand why I may have problems in class.  For example, if I currently in the hospital, I cannot just pop over for class, or turn in a paper.  Little things like that that seem straight forward are a bit too much for them.  
  6. 8 am / Early class: I believe that we speak for all college students when we say that 8 am classes are evil and unnecessary.  However, they still stick around to make our lives miserable.  8 am class takes on a new meaning as a spoonie, because there are those days when you just cannot get up.  Also, your professor may have a bit of trouble understanding why you cannot come to class, because no one wants to be there.  
  7. Accommodations: These are little lifesavers.  I mean, this gives the ability to ask for extensions, and protects you if something comes up.  These documented accommodations are sometimes the only things that allow us to stay in school.  They are those little miracles that allow you to ask for extensions when you are stuck in the hospital, or email that you can’t make it due to a bad flare.  
  8. Medications: Meds can be worse than the symptoms sometimes.  You also can at times feel as if you are living in a pharmacy when you look at your pills.  I mean, if you are on a ton of meds, they pile up pretty quickly.  These also tend to have a few not so fun side effects.  (Because there is sadly no such thing as a good side effect)
  9. The looks: Sometimes when you are on a college campus and a spoonie you become almost a zoo animal.  Your peers do not totally know how to accept being in class with a spoonie, so they look.  They think they are being discrete, but of course that is too much to ask for.  They ask constant questions, and do not know how to politely deal with an individual with a chronic illness.  We are no strangers to looks.  I mean, we walk around campus with a service dog, and bald (wearing a beanie, but still).  These are not things that are “typical,” or “normal” on our campus.  
  10. The dining hall: For Nemo especially, the dining hall was a not so fun place.  I mean, when you can’t really eat the last place you want to go is to the dining hall.  Especially if it is like ours, and cooks everything with extra salt, oil, butter and cheese.  Which is basically everything that Nemo cannot eat.  That led to Nemo living off of plain tofu, bell peppers and trail mix for a few months until she got out of the meal plan.  This meant that Nemo got to cook food in the comfort of our dorm, or basically live off of food that can be reheated in a microwave.  For Nemo it wasn’t just that the food was not appetizing, it was that she physically could not eat the food.  As you can see, this can cause a bit of a problem.  Especially since a lot of people do not understand how this can be an issue.  
  11. The doubt: When you are a spoonie in college there are many people doubting your abilities.  They are the ones telling you to take it easy, and not believing that you can make it through.  This can come from anyone, but can hurt when it comes from those close to you.  This doubt creates the need to succeed, and the need to prove them wrong.

As spoonie college students, we both know that there are a lot of uphill battles.  There are always going to be things in the way, but we will find a way around them.  

WE BELIEVE IN YOU!

-Nemo, Tremors and Secret Agent Puppy

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