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I Wouldn’t Be Who I Am Today Without My Chronic Illness

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The battle you face when your chronically ill is exhausting. It’s a constant battle not only physically but mentally and emotionally. Being chronically ill isn’t what you may think it is — a severe cold here or a hospital visit or two there. It’s a constant war that your body is fighting to stay alive.

I have postural orthostatic tachycardia syndrome (POTS) and a handful of other things I deal with every day. Most of the doctors I’ve seen have never even heard about it, or they know someone who knows someone who faints every now and then if they don’t drink enough water.

Life, at times, can be difficult. There is so much I wish I could do, so I dream about doing those things every day. But I am blessed with the life I have.

The hardest part about being chronically ill is the feeling of being small. You feel like this little girl who isn’t capable of doing the simplest of tasks. There are days I am completely bedridden. I’m homebound and away from work, school and my friends. I was supposed to be doing activities in high school and experiencing once in a lifetime events but I’m in bed.

I started to feel sick when I was around 9 or 10. We noticed something was wrong when I started got sick at the drop of a hat and became horribly winded when I ran up and down the basketball court. I suddenly became too tired to attend dance class. (I live and breathed ballet at the time and would do anything to be in class.) Then one morning, I suddenly fell. But before that life-changing moment, when I had my first near-syncope episode, I had a fulfilled life.

I mean, don’t get me wrong, I am so blessed by the support of my mom and my significant other. I am far better off right now than I was last November when I was diagnosed. I miss the days when I could stay out late and wake up early and when things were carefree. Man, do I miss the feeling of normality.

Even though I’m able to go to work and attend school at my local college, I never forget I am sick.

There are days I believe it’s the worst I have ever felt. I can’t get out of bed and have to have my mom bring me Gatorade,

My medication and food. This is when I’m hardest on myself. I know I can do these simple tasks, but my body fights me. I beat myself up because I should be able to do these simple tasks. I’m ashamed by the fact I’m so dependent on others.

I feel like I let everyone around me down: my friends, my family, my coworkers. But it’s the exact opposite. For those who are chronically ill, we have to tell ourselves that it makes us stronger and more determined.

I am amazing. I continue to fight every moment of the day to keep living just like every other healthy person. I have learned to act as if I am OK to make others around me happy. I have become the master of chugging bottles of water and nasty-tasting electrolytes, waking up at 7 a.m. every day to make sure I take it slow and watching my carbs, protein and sugar intake due to hypoglycemia. (Having POTS wasn’t enough, so adding more things for me to handle makes me a great juggler.)

Getting ready for class and making sure you have enough spoons for your day.
One spoon to get out of bed, two to shower and another three just to make it to class and get in your seat on time.

Then recalculating your spoons because you have dance class later and you need to dance hard to show you know your routines because you have a show coming up. But you don’t have enough spoons. You can’t do this without your spoons. How am I going to have enough spoons to get through this day? Stand up to go get fresh air because your heart is fluttering because you don’t have enough spoons. Then slam, you faint, you’re out of spoons.

Somehow, I can still get ready, pull myself together and smile. I do this without telling anyone I cried myself to sleep because I had a sensory overload and felt pity for myself and those around me who have to deal with me. I have war that is constantly happening within me, and I am gaining ground every day. I can go to work and attend school with my heart flying, thinking I am about to pass out and no one would ever know. I now know the expression “grin and bear it” as if I made it myself.

This is what I have learned in this sometimes unfair world. I am blessed to be able to live, breathe, laugh and all the beautiful things that come with this crazy thing called life.

Yes, there are times when life can be cruel and unfair, but I am beyond proud of myself. I have such a high understanding for others living with the pain of a “chronic illness.” I wouldn’t be the person I am today if I hadn’t faced challenges. I may never be the person I have always dreamt of being, but I will be much more than I have ever hoped.

Lead photo source: Thinkstock Images

Originally published: September 30, 2016
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