"When I Wake Up"

Written on: 15 April 2015

I wake up every morning hoping…

that today will be a better day

               it will be an easier day than yesterday

               it will be a day where I won’t embarrass myself

               I won’t have flare ups

               I won’t have to explain myself

               they will understand

               that my invisible illness is not visible

                              or that it is

                              so they will understand

                              what I am going through

Oh, only if they understood

               the pain

               the embarrassment

               the struggle

               the weakness

               the numbness

               the loneliness

When I finally get through the day

I go to bed hoping…

               That tomorrow will be better

               That I did everything I was supposed to

               That I put up a good fight

               That I was strong enough

               And that tomorrow I will be strong enough…

                

“Moments in Time”

Written on: 17 April 2015

There are moments in time

When I forget

When I forget I am ill

               I forget how I felt earlier that day

               I forget what it feels like to be weak

               I forget what it feels like to be dizzy

               I forget what it feels like to be in pain

               I forget what it feels like to feel vulnerable

In those moments I enjoy life

               I enjoy the little things in life

               I enjoy Laughter

               I enjoy friends

               I enjoy family

               I enjoy feeling normal

Later on I realize something 

That I still get those moments

And then

I feel blessed.

"slings and arrows of outrageous fortune"

There's a line from Hamlet that can be taken in from a chronic illness stand point. I have been having troubles controlling my symptoms for the last week (won't go into the details now), but as one of my (lets just call him a mentor) told me, while I was crying over the phone worrying, that "you can't control the uncontrollable." He gave me some needed perspective on my situation, he has a chronic illness himself and has friends and colleagues that also live with chronic illnesses. He talked me through it by asking me questions like: have you gotten enough sleep? Have you been eating?

 

He knows I am stressed with finals week coming up. He was helping me figure out what my "triggers" are. Triggers are what causes, essentially, a flare up. Mine, as I found out are: lack of sleep, caffeine, stress, not eating in a while...and that is all I have so far. So yeah, as I ponder this I wonder how the hell am I going to escape these four "triggers"? I am never hungry and when I do eat, I eat very little (small stomach), I am a caffeine addict (Starbucks), I am a college student, so there goes the sleep and here comes the stress.

 

Also, while I have been thinking about all of these things I remembered what one of my very supportive professors had sent me in an email about my "misfortune." He said that he suspects that it ""weighs heavily on you (something you always took for granted suddenly creating trouble) and sometimes artistic expression gives us permission to explore the limits of our own existence (the "slings and arrows of outrageous fortune" as Hamlet says)."" So yeah pretty freaking deep, right?? I am not going to lie, when I first read this email I cried. I felt as if someone understood me and my "misfortune."

 

But not until today did I actually look up the meaning of what Hamlet had said in  Act 3 Scene 1. It is obviously a metaphor, someone said that Hamlet is talking about "suffering and enduring the hardships of a situation that he is in." Someone else said that it means to "put up with all of the bad things life has to offer." Everyone has their own interpretation of Hamlet but, I think I like the first one. That is what a chronic illness is, it is enduring a hardship of a situation that I was put in and there is nothing I can do about it.

Quote from the book "Man's Search for Meaning" Author Viktor Frankl

Frankl was a German Psychiatrist who spent five years in a Nazi Concentration Camp. He wrote that when he was in the camp he could tell that if certain people would ever be released, which ones would be okay and which would not.

 

He wrote: "Everything in life can be taken from you except one thing; your freedom to choose how you will respond to the situation. This is what determines the quality of the life that we've lived. Not whether we have been rich or poor, famous or unknown, healthy or suffering. What determines our quality of life is how we relate to these realities. What kind of meaning we assign them. What kind of attitude we cling to about them. What state of mind we allow them to trigger."

Invisible Illness Website

Here is a good website that I found last night. It is an invisible illness website with a bunch of articles, suggestions of books and some other great things. http://invisibleillnessweek.com/

I hate blogs but here is why I decided to start one.

As you can tell I am not a huge fan of people that blog about their life and all of their problems. But for those who stumble across my blog and do not know me: Hello my name is Shelby St. Pierre, about a month ago I was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) it is a form of Dysautonomia, which is a nervous system dysfunction. I am not going to go into details right now, maybe later. Oh, yeah I am 18. There you now understand the title of my blog. Now for the reason as to why I decided to start a blog. First; it is the 21st century. Second; for my family and friends. I feel as though it is important for them to understand what is going on with me. And it is also important to me that they understand. NOT because I want their pity, that is the last thing I want. Third; I know they want to know, maybe not all of them. I know it is hard for them to ask me certain questions about what is going on with me and this illness. So why not put it in a blog? And blog about saying that it is Ok for anyone to ask me any questions they want. Finally; I know I am not the only one in my family and out of my close friends that is struggling with an illness. I want them to know that they are not the only ones with this struggle. I want them to know that it is ok to open up and talk about it and how they are feeling. And even though they feel like it, they are not a burden. Well that is all I have for tonight. I am not going to make any promises about when I am going to blog except for when I feel like it. Have a great morning. I love you all!