August 26, 2015
I believe chronic illnesses can change your life in some weird ways, but sometimes they are the best ways ever. For instance, I wouldn’t have met some of the amazing people I’ve become such close friends with. My illnesses also make ER trips and words like “eosinophilic” just a part of my life, along with “seizures,” “comas” and “spoonies.” My life has changed in some of the weirdest ways, but it’s a good thing. Here’s a list of some of the weird ways my life changed because of my chronic illnesses…
1. I almost always have selfies from a hospital or ER on my phone at any given moment.
My favorite selfies are when I’m drugged from the medicine I take for my chronic illnesses. Someone should learn to take my phone away, but I think it makes for a good text to my best friend the next day.
2. I’ve lost people close to me.
My experience is that when you become ill, people stay for a little while, but when you can’t hang out and you’re too weak to text them back, they might slowly fade away. That even includes family and close friends. And that’s when…
3. I found the world of spoonies.
“Spoonies” are people who are chronically ill and people who deal with being ill. When you find this world online, it can be like magic. You find people like you, people who enjoy the weird things you do. They take photos of their feeding tubes and their ports like it’s nothing, and for a moment when you have to deal with this world, you could feel slightly normal.
4. I set goals for showering, taking meds, eating and anything else.
My goals might be small to some people, but when you have a chronic illness and take a shower, it can be a big freakin’ deal. It’s hard to shower for me; it’s hard to move, let alone do things that are physically hard.
5. Watching Netflix/Hulu/cable has become a sport.
I can tell you all the good shows out, and I can totally win any trivia game on TV shows and movies. I’m really good at Netflixing. It’s a passion at 2 a.m.
6. I’ve learned people don’t always care when you don’t get better fast.
For some reason, some people don’t understand the chronic part of chronic illnesses. They forget that chronic illnesses don’t get better in three months and with rest, and they forget me. But slowly I’ve found the people who stay and stick with me, and those people are my heroes.
7. The guilt of having a chronic/rare/incurable disease is sometimes worse than the pain from the disease.
I have a few moments when I felt horrid because of the guilt. For example, I couldn’t wash dishes and I felt guilty because of it. I want to be there for my family and friends, and I don’t want to make people do things for me. All the money they spend, all the sleepless nights — I notice them and am really thankful for them.
8. People stare at you for weird reasons all the time.
People with chronic illnesses often get stares, whether it’s because you’re in a wheelchair or using a walker, or you have a port connected to a backpack or a feeding tube sticking out of your stomach at the beach or swimming pool… Or for no reason at all. We learn to deal with the stares and we have to learn to laugh about them. But please don’t stare.
9. I’ve learned to enjoy little moments.
I love being able to wash dishes or go to Target on good days, and I love Facetime-ing with my friends who also have chronic illnesses. You might learn to appreciate the little things, too, like the t-shirts your sister got you and the spoon necklace. The smoothie my sister brought me to bed this morning meant more to me than words can say. It’s all the little things.
10. Doctors might call you more than most friends.
I got a call from my allergist the other day, and even this morning they called me. The nurse totally knew who I was. And this happens a lot.
11. I sleep more hours than I’m awake some weeks and vice versa.
A while back, I slept for a bunch of days in a row. Or wait… I was in a coma (coma joke). But sometimes I can’t sleep. Like this week, my body doesn’t want to sleep unless it’s 2 in the afternoon. But last week I was nonstop sleeping.
12. I accepted that my life from this point on is a chronically amazing one.
I might be chronically ill, but I’m also chronically amazing. I will be sick; it’s just a matter of how sick I will be. But I can find the happiness in each day. I will be OK because I will fight until the day my body has no fight left in it. And even then, I’ll fight like hell. And I know I have some amazingly fantastically people who will fight for me and with me and alongside me.
I’m accepting that I’m sick, I’m ill… That changes me — but in the best way possible. It has showed me so much I never knew. It has shown me how to breathe deeply and enjoy the air. It’s been so amazingly wonderful, and my life is good. I like my life. I like the world I have.
I wouldn’t change my spoonie world for a lot. I was born and my journey is unfolding exactly as it should be. I am strong enough to live in my body.
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