Ehlers-Danlos Awareness: Tell It Like It Is

I want to keep this whole blog space as positive as I can. I also want to keep it as honest as I can. So, let’s be honest.

I’m pretty good at acting like I’m totally fine and normal and cheery, even when I don’t feel so great. But… sometimes I’m not. And some days I don’t want to be.

Because, in the name of honesty, some days suck - and often for no apparent reason. Yesterday was 100% one of those days for me. It didn’t make sense. I had a really good weekend, my midterm stress should’ve dissipated, and I didn’t have too much on my plate. I woke up and it was a drizzly day. I had an okay workout that took away a little of the pain I started the day with. I was a little extra restless during econ, but not much worse than usual. I even got to see Jon Stewart talk on campus after class.

I was feeling pretty low-energy, though, and ended up feeling starving for most of the day. After lunch, I ate nuts, berries, and granola by the handful. I was sticking bananas and toast and spoons into nut butter jars and pouring bowl after bowl of cereal and Greek yogurt until past 10 pm. Nothing really stuck to me, though. My focus was approximately non-existent, which was really helpful for the reading I needed to finish up. I even needed to cut a conversation with my mom short because I couldn’t focus on our conversation. I was in a whole lot of pain. 

Some days are just like that. There. I said it: some days suck.

Whether you have a chronic illness or not, I bet you know that’s true. And if you do have a chronic illness, you know that if your regular days are no walk in the park, your bad days are a little more like a treacherous, icy hike uphill.

So. Chronic illness patient or not, you’re having one of your crappy days. Well, actually, I really hope you’re not. But let’s pretend you are. How do you go about making it better?

Not every day is fabulous. Here are 5 ways @EllenSlater makes those bad days a little better. Click To Tweet

Cry

Honestly, I live with roommates and would usually rather not. But it really helps so much. There’s this huge release of tension, anger, and emotion. You can’t always explain why you want to cry or why you can just keep crying. I’ve cried for two hours for no apparent reason. It can make you feel completely crazy, but when you’re done… you feel a little freer. 

Don’t judge yourself

I’m not a master at this at all. But I’m learning, and when you can do it, it helps. You need the extra energy, or even just the comfort, so eat the food you crave. Drink an extra cup of coffee if that floats your boat. Walk obnoxiously slowly if moving feels like a chore. Wear the comfiest clothes you can. Give yourself what you objectively deem “too many” breaks. You need to do what you need to do to keep going. No one else can prescribe that, and you’re not going to help yourself by telling yourself you’re doing the whole day wrong. If you’re doing the day at all, even if that means it’s 80% napping and snacking, you’re doing it right. I promise.

Dance party

Turn on some music and dance a little. Or a lot. Feel free to go crazy if you’re up to it. If not, I’ve found that just listening to some good upbeat music can make you smile. Music isn’t your thing? Audiobooks and podcasts make excellent distractions, too. Jim Dale does a killer reading of the Harry Potter books, and here’s a list of funny podcasts. 

Plan

What are you going to do when you feel better? Because you will feel better and there are plenty of things you want to do. Sometimes it’s easy to lose sight of that when you aren’t feeling well, but tomorrow is a new day - and next week is a new week. You will have time to do the things you want, so make a plan for then and try to relax for now.

5 tricks @EllenSlater keeps up her sleeve for those less-than-fabulous days Click To Tweet

Tell someone

If someone you care about asks how you are, don’t lie and say you’re doing great. Tell them you’re struggling. Sharing the burden of a shitty day can make it feel a little bit better. If no one specifically asks, I bet you can find someone to tell. And if not? Shoot me an email: [email protected]. 

How do you crush a crappy day?

After eating about 1/3 of my food yesterday, I need new snack suggestions. Ready, go!