What It's Like Living As A Spoonie

At 16, I Was Diagnosed With EDS And It Changed My Life Forever

It has changed everything.

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For as long as I can remember, I have suffered from chronic pain, injuries for seemingly no reason, and hypermobility. After 16 years of not knowing what was happening to me or why and countless trips to doctors in an effort to finally find answers, I was diagnosed with Ehlers-Danlos Syndrome.

Ehlers-Danlos Syndrome (or EDS) is a disorder affecting the collagen in your body causing it to be looser and more fragile than that of people without the genetic marker. Though it has been a few years since I was diagnosed and I have had plenty of time to adjust to life with a diagnosis, the things that most people don't know are still present in both my life and others who suffer from invisible illness.

Imagine this: it's 9 a.m., your alarm has just gone off and the sun is peeking through your window. Everything seems fine... until you stand up, that is. The moment your feet hit the floor you're overtaken with dizziness and pain, a feeling most people will never experience. That's what waking up with an invisible illness is like, not to say waking up is an easy task for everyone, but something so simple can truly take so much out of you when your body is working against you.

Now, despite such an unpleasant first feeling, life still happens around us. We drag ourselves out of bed and get ready for the day, pushing through the pain just to get through work or school. We still strive to be the best that we can be and will do as much as we can to accomplish that, we just have a few extra barriers blocking our paths.

Explaining invisible illness to those who don't understand is nearly as difficult as getting through the day. If I had a quarter for every time I've heard the words "But you don't look sick." after telling somebody I am, I would be rich. Illness does not have to be externally visible to be present, and that is the most important thing to recognize.

Often times, it takes multiple explanations, Google searches for visuals and trying to make your illness physically obvious for people to understand that you truly mean it when you say you can't carry that box of stuff for work or sit in the front of the room. Having to explain what you're feeling over and over again without success can be pretty taxing and sometimes even invalidating.

Something many people with invisible or chronic illness have taken to using as a metaphor for what life is like for us is the Spoon Theory. The easiest way to explain this theory is to imagine that every day you are given 12 spoons (less if you've been sick or have forgotten to take your medication) and for every activity you participate in, you have to turn in a given amount of spoons. Something simple, like brushing your teeth, would cost one spoon. The harder or more involved the task, the more spoons you have to give up. This theory is a perfect representation of life with chronic/invisible illness and truly helps those around us to understand what we feel daily.

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A list Of 15 Inspiring Words That Mean So Much

A single word can mean a lot.
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Positivity is so important in life. A lot of times we always go to quotes for empowerment but I have realized that just one word can be just as powerful. Here is a list of inspiring words.

1. Worthy

Realizing your self-worth is important. Self-worth can really make or break a persons personality. Always know that you are worthy of respect. And also, never compare yourself to others.

2. Courage

Be courageous in life. Life has so many opportunities so do not be scared to grasp any opportunity that comes your way. You have the ability to do anything you have your heart and mind set to do, even the things that frighten you.

3. Enough

When you are feeling down and feeling that nothing you do is ever good enough, know that you are more than enough. And yes there is always room for improvement but when it comes to my self-worth I always have to remind myself that I am enough.

4. Blessed

Be thankful. A lot of times we forget how blessed we are. We focus so much on stress and the bad things that are going on in our lives that we tend to forget all of the beautiful things we have in life.

5. Focus

Focus on your goals, focus on positive things, and focus on the ones you love. Do not focus on things that will keep you from not reaching your goals and people that do not have good intentions for your life.

6. Laugh

Laughing is one of the best forms of medicine. Life is truly better with laughter.

7. Warrior

Through the good and the bad you are a warrior. Be strong, soldier.

8. Seek

Seek new things. Allow yourself to grow in life. Do not just be stuck.

9. Faith

During the bad times, no matter the circumstances, have faith that everything will be all right.

10. Live

Start living because life is honestly way too short. Live life the way you want to live. Do not let anyone try to control you.

11. Enjoy

Enjoy everything that life has to offer. Enjoy even the littlest of things because, as I said before, life is short. And plus, there is no time to live life with regrets.

12. Believe

Believe in yourself and never stop. Believing in yourself brings so many blessings and opportunities in your life.

13. Serendipity

A lot of times we look for things to fill an empty void that we have. Usually what we are looking for comes when we are not looking at all. Your serendipity will come.

14. Create

Share your ideas with the world. Creativity brings change to your life. However you chose to use your creativity do not be scared to show your intelligence, talent, and passion.

15. Love

The world is already full of so much hate, so love unconditionally with all your heart.

Cover Image Credit: Tanveer Naseer

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What Having Type 1 Diabetes For 11 Years Has Taught Me

When I was diagnosed, the only thing that I could think about was that whatever this "diabetes thing" was — it must be really bad. Little did I know that, almost 11 years later, I could look back at this "diabetes thing" as something that has been really good for my life.

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In the middle of July in 2008, I started drinking an average of two or three gallons of water a day, going to the bathroom two or three times per hour, and losing a ton of weight. On July 21, 2008, after my parents pretty much self-diagnosed me at home with extra ketone strips, my doctor came into the room with tears streaming down her face and the news that I had Type 1 Diabetes. Everyone in the room, including the doctors, was crying. The only thing that I could think was that whatever this "diabetes thing" was- it must be really bad. Little did I know that, almost 11 years later, I could look back at this "diabetes things" as something that has been really good for my life.

Over the next couple days, I experienced a lot of new things- learning how do to seven to eight injections a day in my stomach, eight to fourteen finger pricks a day, a lot of big medical words, a lot of tears, and thankfully the knowledge that this all was not my fault. I found so much comfort knowing that I had diabetes because my immune system that killed all my beta cells, and knowing that there was nothing that I could have done to prevent it.

At that point, I knew God wanted this for me for some reason.

In the week following the diagnosis, I loved having diabetes. I felt special because I was different and my friends wanted me to talk about it all the time because they were fascinated by all things diabetes related. However, as I continued to have injection after injection and count carb after carb, I began to question why this had to happen to me and began to question why I should even take care of myself because, after all, this taxing disease would follow me for the rest of my life.

My perspective completely changed as I sat down to watch the 2011 Indy 500 with my dad. Watching the Indy 500 had been a tradition for my dad and me since he first showed me the sport in when I was nine. I loved the history, the loud engines, and the high speeds of it all and became a big fan of Danica Patrick, before she went to NASCAR.

The 2011 Indy 500 seemed like any other race, but little did I know that it would be the last Indy 500 I would watch on the couch.

As they introduced the drivers, we watched as Charlie Kimball, a rookie, waived to the crowd. By the time he had finished waiving, my dad was in tears. This was because as Charlie was waiving to the crowd, they announced him as Charlie Kimball, the first IndyCar driver to drive with Type 1 Diabetes. This was absolutely unheard of and it seemed literally impossible that he could race at more than 220 miles per hour while having diabetes, an extremely unpredictable disease. With tears in his eyes, my dad turned to me and said words I will never forget.

"You're going to meet that guy, Mary Clare. I want you to know that you can do anything with diabetes."

Meeting Charlie for the first time in the pit of the Iowa Speedway in Newton, Iowa. June 2011. Photo Credit: Mary Clare Halpin

Later that year, at a race in Newton, Iowa, my dad's promise was fulfilled as I met "the first IndyCar driver to drive with Type 1 Diabetes"- Charlie Kimball. Charlie took my sister, my dad, and me into the pits on race day to show us his race car and how he manages his diabetes inside and outside of the car. He told me "the diagnosis of diabetes has been a speed bump, not a roadblock." I decided in that moment to make diabetes my speed bump and that I wasn't going to let it slow me down; after all, Charlie can go 220+ miles an hour with diabetes.

In the days following the race, I wrote Charlie a four-page thank you note explaining all that he done for me. I did not hear anything back from Charlie until the next May, when my dad got a call from ESPN. They were calling him to asking him if I could be a part of the piece that they were doing to show how Charlie inspires kids with diabetes for the pre-show of the Indy 500. We obviously said "yes" and a few weeks later an ESPN crew came to Kansas City to interview my mom, my dad, and I and to film me at lacrosse practice and dance class.

After they finished, the producer told my family that they wanted to finish the piece, which aired before the start of the race, by filming me live in the pits talking to Charlie before the Indy 500. We made the trip out to Indianapolis that Memorial Day weekend, a tradition that will always be extremely special to our family because what Charlie has done for my life. Charlie brought us to dinner with his family and friends on Friday night, brought me with him to ride in the race parade the day before the race, inspired me through the way he helps those with diabetes, and introduced me to the all the traditions and the magic of the Indy 500, something that means the world to me.

Talking in the pits with Charlie at the Indianapolis Motor Speedway before the 2012 Indy 500. May 2012. Photo Credit: Mary Clare Halpin

Because of Charlie's living example and light he brought to my struggle, my life has been changed forever. I no longer look at diabetes as something that hurts me, but rather has helped me. I feel lucky that God chose me to have diabetes because I wouldn't have met Charlie and I wouldn't be the person I am today. I have not only been able to experience incredible things and a positive outlook on something difficult I have to deal with every day due to Charlie's impact on my life, but I have learned two extremely valuable lessons at a young age — bring light to others and find your "why."

I try everyday day to bring light to each person I come in contact with because I know it can change lives, just as Charlie has done for me. I try to bring light because we all have something that affects us every day and it just takes one person to change our "_____ thing" into something really good.

When the injections get to be too much, or I do not want to get up in the middle of the night to treat my low blood sugar, I think of my "why." Finding the deepest desire of my heart, to be a good wife and mom someday, and using it to motivate me to do the simple and the big things has made my life so fulfilling. I know that, as I am enjoying my life with my own family someday, I will be thanking the nineteen-year-old me someday that I did the work to make my dream possible.

However large your "roadblock" or struggle may seem, know that I am rooting for you. If you just change your perspective and use it instead as a speed bump, you can slow down and use improve your life. And you'll win your race.

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