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6 New Year's Resolutions I'm Making for Surviving 2020 With Chronic Illness

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Who has two thumbs, speaks moderate French and has a variety of conditions including Ehlers Danlos syndrome, borderline personality disorder and narcolepsy? This moi!

OK, I need to pause because listing all that off is exhausting. And I’m not even counting your basics like post-traumatic stress disorder, depression, anxiety and everything else you’d assume would come with being physically broken.

Because of the Ehlers Danlos Syndrome, my whole body aches. A syndrome characterized by a lack of collagen, my corneas have abrasions that distort my vision. My joints creak together. My hips dislocate, my arms distort in my sleep and get stuck under me, causing constant sprains and intense pain. With narcolepsy, I constantly feel like I’ve been awake for days and might either fade or get a burst of energy at any given moment.

To give you a taste of what life is like, I was misdiagnosed with multiple sclerosis for years because of the physical and neurological effects of each disorder.

I often see people living their normal lives and I don’t understand how they can just do things all day long, every day; to me it’s bizarre, frankly. So when people ask for New Year’s resolutions as 2019 comes to a close, mine are going to look a little different.

1. Rest.

I wake up every day with a to-do list already tumbling around my head. I need to have a perfectly clean and organized home. I need to take my daughter to fun places to get her energy out. I need to excel at work. I need to excel at writing and managing my dog’s Instagram (she now has more followers than I do). Maybe I’ll make a video for YouTube or record voice acting snippets for HitRecord.

With this fear of not accomplishing what I think I need to, I exhaust myself. I imagine the fear developed as a coping mechanism to fight the narcolepsy — to keep me awake and functional, to blend in with the non-narcoleptics.

But you know what? Narcoleptics are allowed to rest — encouraged, even. My doctor told me to nap…”insane,” right?

So I resolve to go easier on myself. To embrace couch time cuddled up with my emotional support dog and to keep a lighter schedule.

2. Be vocal about the things I cannot do.

No — I’m not going to meet you for karaoke at 9 p.m. after I survived a whole work week. No — I can’t ride with you to the event because you want to go early and stay late and I physically can’t. No — I can’t watch your kids…they’re great, but it wears out my whole body.

But please keep inviting me. Some days are better than others. Some days I can, which leads me to my next resolution.

3. Focus on what I can do. 

I can’t see well enough to drive. So I moved to the downtown area of my old city and found an ophthalmologist, therapist and job within one mile. When it’s warm, I zoom around town on a sweet vintage road bike I found on Marketplace for $40. When it’s snowy, I can shuffle around in my snow pants and ski jacket, rosy cheeked and bundled up beyond recognition.

I can’t stay mentally alert long enough to work full-time days in an office, but I’ve found a wonderful place where I can work part-time, keep a regular schedule and work on my creative projects during my random bursts of energy at home.

I also have a secret nap spot at work, but keep that to yourself, please.

Standing up long enough to prepare meals is hard on my body, but I have absolutely mastered prepping crock pot freezer meals in advance…and ordering delivery.

I can’t really go out at night with my friends because I just think about my bed. So we’ve started having “Pajama Days” on weekend mornings: hot drinks, slippers, musicals and long talks.

I can’t drink coffee because Ehlers Danlos Syndrome comes with gastritis and other stomach problems, but I do because I’m stubborn and I need it.

4. Try to be grateful. 

Even if some days all I can do is the try part.

Maybe keep a journal or something.

5. Forgive myself.

Today I will likely not get my apartment to the point of being ready for a Better Homes and Gardens photo shoot. But the dishes will be done, the laundry put away (fingers crossed) and, ultimately, I will sit down tonight near my little Christmas tree and look around the cozy home I have created.

I will not write “The Great American Novel,” but maybe I’ll push out a few notes or paragraphs. I probably won’t make any stop motion videos, or do as many push-ups as I can. It’s too snowy to zoom around the city, but I’ll shuffle the dog around the block and get some cute pictures of her.

Some days I will not accomplish as much. Some days I will leave work early, curl up on the couch and chain watch cooking shows and feel like a failure.

And I may drift through life more slowly than those around me.

I may not accomplish all of the things that I dream of, but I can make just enough money. I can teach my daughter how to be kind. I can spoil a little Rottweiner (not a typo, she’s half wiener-dog) rescued from the middle of an Alabama road.

So I can resolve to forgive myself, even if it’s an active choice moment to moment. It’s hard but not as hard as my next resolution.

6. Forgive those who don’t understand.

The anger that comes with chronic illness is a topic for an entirely different article altogether. Years of misdiagnosis keeping me from any kind of helpful treatment. Years of “you’re just depressed” and not being allowed to sleep during the day when I physically needed to. Every piece of unsolicited advice or every time I was called “aggravating” for needing to cancel plans…there is so much anger.

But I can use my words to explain how I feel. I can connect with communities of people who also have my diagnoses and feel less alone. I can find the good words, the encouragement, the kindness and help I’ve received. I can see it through all the anger. For every friend I can’t meet up with at night, there are five that will come over Saturday morning for Pajama Day.

Forgiving, I think, is the most important, yet difficult thing a person can do. And sometimes it takes practice and daily work. And sometimes anger will creep back and need to be confronted.

So I resolve to put the work in. Even when I feel like I can’t do anything.

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Originally published: December 12, 2019
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