Posts

My Double Life

I live a double life, there is no denying that. My friends see one thing but I know that is not who I really am. How do I manage to juggle so many identities at once, how do I explain who I am to others. My friends all see my outer shell, they see a girl who is in college. They see somebody just like them, they see a lie. When they leave school they go out with friends, have fun with family, they get to do whatever they want but I don't. I have to set alarms to make sure I take my medication throughout the day or else I will be to sick to attend class, my facade will be broken.  Even during classes I am forced to take medications, displaying to my peers that there is something wrong with me.   I am on a first name basis with all of my doctors as well as much of the ER staff. The hospital is the place where everybody knows my name. While my friends wonder where they will work, I wonder if I will ever be able to work.   I spend my weekends in the hospital getti...

I Have a Chronic Illness

We don't think everyone knows what a chronic illness is.  They might have heard the term, or they may know someone who has a chronic illness.  However, they still may not fully grasp the subject.  For example, people close to us constantly ask when we are going to be cured.  News flash, we aren't, so the answer is never.  It's just something we have to learn to live with.  We will never be fully free from this condition.  We are reliant on doctors, nurses, and more medications than you can count.  Our phones can spell out medication names as well as what our conditions are with one letter.  We have good days, bad days, and straight up awful days.  At any moment our good days can become bad.  We can go out with friends somedays, but others we are stuck in bed.  We might have to cancel, we might not be feeling great.  We sometimes pretend that we are feeling okay when we really are not. We ask that people learn more about c...

I am not my diagnosis

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No one goes out like this--certainly not us We have to admit that one of our professors gave the idea for this week’s post.   Let’s be honest here, no one walks around holding giant signs with their conditions listed.   Your diagnosis is not your label.   The question is why do some people believe that it is.   The answers to that are endless, but basically some people are just awful.   Why must our diagnosis be the only thing that we are?   Why can’t we be known as something that is positive?   We are both daughters, sisters, students and so much more than our diagnoses.   We love watching random movies and TV shows.   We love to relax and go out with friends.   Though we might not be able to do absolutely everything, we still try.   There are days where we just need to take a break, and others where we can act fairly normal.   We do not go out where we go and start giving out our diagnoses.   If necessary, or if...

College Survival Tip #3 Back to School

First, we would like to apologize/acknowledge our absence over summer.  Simply put, our summers were full of hospitalizations, appointments, medication changes, vacations, and more.  Now, with colleges starting back up again I (Tremors) decided that it was time for another survival tip: how to survive the back to school rush. Back to school is something that everyone dreads in some way, shape, or form.  It means the end of the freedom of summer time, and back to the grind at school.  Which is frankly isn't something I look forward to since I really like relaxing over summer.  When you go back to school as a spoonie there is a lot that you have to do.  You need to make sure you have your housing set, that you have your accommodations in place, you need to talk to your professors, and you have to get your body use to a new schedule.  None of this is something that people truly enjoy doing. To survive back to school as a spoonie: 1.) Do not try to d...

It's not like the movies

I don’t know about you, but we certainly have noticed quite a few books / movies that are about individuals with some sort of illness.  Now, if you look at these books / movies closer there is something pretty obvious about them.  They are pretty much all romances, and let’s just say the two of our life experiences do not match up (at all).  Today we decided to examine a little deeper how little our lives relate to these stories that are beloved by many.  We aren’t saying don’t read these books, we are just saying from the point of view of someone with a chronic illness, there is not a lot of things in common.   Chronic Illnesses aren’t glamorous: Chronic illness is more than a label.  It is something that takes over your life, and the lives of everyone around you.  It is days of feeling too sick to get out of bed.  Days of taking a crazy amount of medications, and some including some not so fun side effects.  There are countless a...

"I know EXACTLY what you are going through"

When you have a chronic illness a lot people do not know how to respond or how to talk to you about it.  They can be confused, feel bad, or can be completely clueless.  Now some people are great, and they are the people that in someway can understand what you are going through (maybe they are going through it themselves, know someone who has, or they are just good at being there for you).  However, more often than not you find the individuals who have no idea how to address someone who is chronically ill.  Today we decided to tell you about 2 things people have said to us that aren’t the best things to say to someone who is chronically ill.   This honestly sounds like something that we could have made up.  I mean, who would say something like this to a person?  Sadly, this has happened a lot, and always leads the intense need/desire to roll your eyes.  The statement goes along the lines of “Oh I understand what you are going through--I watch ...