Spoonies are Amazing

When you are a chronically ill there are many sacrifices.  Chronic illness takes over your life, and changes everything.  You become a spoonie.  (Which means that you use spoons as a measure for daily activities they are able to do.  In the spoon theory you have 12 spoons to spend for the entire day.  For example, getting out of bed may cost you one spoon, while making a meal may cost three) You have to change your entire day to make sure that you have the ability to make it through it.  While you desire a “normal” life, however you life does not work that way.  You have days where you cannot get out of bed.  You have days when you cannot eat.  You have days when you are in so much pain, that you do not know what to do.  With these kinds of days, you naturally may be unable to go out with friends, go to work, go to class, etc.  It happens, and all I want is for people without chronic illness to understand that I am sorry.  To them, I am sleeping in, or ditching class.  I am ignoring them, and blowing them off.  Please understand that this is not true.  Nobody wants to be this sick.

1)       Please know that I want to be normal.  I want to be able to live my life.  I want to be able to travel.  I want to be able to go out.  I do not want to spend my time in clinics and hospital rooms.  I would give almost anything to be able to trade lives. If I had a normal life  I would go out with friends, and to go on vacations. However this is not reality, my reality is that  my friends include nurses, and other patients.  My phone automatically recognizes obscure medication names, and my second home is the hospital.  I have memorized the hospital menus, and know more people at the hospital than at school.  

2)       Invisible Illnesses are real.  I may look healthy, but trust me, I am not;  I am sick.  Please do not doubt me, living the way that I do is not something that a person would lie about, it is not something that a person would ever desire.  Please do not make comments along the lines of “But you don’t look sick.”  I am sick, and I will be for the rest of my life.  Yourcomments “you are to pretty to be sick”, “you are too young to be sick”, “but you looks so healthy” are not a compliment, they make me want to curl up in a ball and cry.  Pretending to be normal takes all my energy, and while I am glad that I have pulled it off that does not make me feel any better on the inside. Hiding my bad days is to make you feel better, not me.

3) During a “bad day” I am lucky to get out of bed.  On a flare day, it is amazing if I get dressed, or take a shower.  I should honestly get a medal if i go shopping for food, take a shower, or interact with another human.  When I feel awful the last thing I want to do is to leave the house, but I leave because the world is not built for spoonie. You can't just quit life whenever your body retaliates, especially if your body retaliates more than it cooperates. So we settle for small accomplishments like not throwing up after taking medication, and being able to sleep through the night without pain.

(If you want to find more look up spoonie achievements--we did not make them!)

4) Even though it can be hard to have a chronic illness, the biggest upside is that when you meet a fellow spoonie, you are friends for life.  When you find someone who understands the day to day struggle, you are linked.  You understand each other on a deeper level.  You may not have the same diagnosis, but all spoonies share that connection.  You understand the fake smiles, and doctors appointments.  You understand the nights spent lying awake, or the days where all you do is sleep.  You understand the horrors of medication side effects, and the relief a diagnosis can bring.  This happened with the two of us.  We figured out that we were both spoonies, and after that we were inseparable.  

Do you think I want to be this sick?  Do you think that I want to live in the hospital?  Do you think that I want to have to live my life with medication and doctor's deciding my every move?  Would you pick this life?  A life full of appointment and pills? A life where nobody can tell you what tomorrow, let alone next year holds? To be able to live a life that remotely resembles “normal” is hard when you have a chronic illness.  Your life is flipped upside down, and many do not understand that.  When someone with a chronic illness cancels on you because they are not feeling well, they are not feeling well.  If they say that they have an important appointment they need to go to, believe them.  While we can not speak for all spoonies we feel that this is the life we were given so we might as well live it.

TO ALL THE SPOONIES OUT THERE WE BELIEVE IN YOU!

-NEMO, TREMORS AND SECRET AGENT PUPPY