Love, Butterflies, and Ginger Ale.

There are certain things in life you don’t appreciate fully when you’re young. Like taking naps, or having a spring break. Or your relationship with your grandparents.

I was very close to my Gramma as a little kid–– she babysat us often, and I remember doing puzzles with her, or taking the bus to the mall (she never, ever drove), or watching soaps in her living room. I remember playing rummy with cards that had baby zoo animals on them, and that she always had snacks we liked at her apartment. I remember that she had a popcorn ceiling–– something I didn’t have a name for until many years later, but that I always just associated with Gramma’s house.

She liked butterflies, and anything made of pewter, and reading, and she really loved Taco Bell, which in retrospect is hilarious for its incongruity. And she was sick, pretty much always. Not in the alarming way most people’s grandparents are sick, where it signifies that death is coming–– the chronic kind, where most of my childhood was spent in the back of my mom’s van, chatting with her while we drove her to doctor’s appointments.

I was young when she developed dementia, and while she technically lived well into my college years, all of my viscerally happy memories of her are squeezed into my childhood. I was diagnosed with Crohn’s disease when I was 17, long after her mind was already fairly out of sorts. And now, at 24, when a flare has taken me into the territory of truly, chronically sick person, I find myself missing the relationship we could have had now that I am an adult.

When you’re sick, you seek out people who might best understand. It’s not anyone’s fault if they can’t understand–– in fact, it’s great news for your loved ones if they can’t fully understand. It means they’re healthy, which is all I want for the people in my life. But sometimes, when symptoms are bad and you need a commiserating ear, another chronically ill person is the best possible option. Especially when that person is family.

I know if my Gramma were around, we could sit around and watch TV, and I wouldn’t feel bad at all bitching to her about how my steroid taper is making my hips hurt so bad that I can’t sleep. She would probably tell me about her own joint pain, and messed up sleep schedule, and how getting from point A to point B leaves her winded. We would probably make a joke of it and drink some ginger ale and then she’d force me to take home a stuffed animal she had in her apartment.

But even though she’s not around, I feel like I can learn about living with sickness from her even in retrospect. While she definitely didn’t live life mistake-free, she did a lot of things I can take away for myself. She threw her energy into loving her grandkids. She made us feel special when I’m sure she wasn’t feeling that way herself. She read a lot, and tried to keep her mind up even when it was fighting against her–– the nurses in her assisted living facility had to repeatedly clean out her room because she was hoarding books, a fact about her last years that I love a lot.

So on days like today–– her birthday–– I will get my own struggles together and take away the things she would have wanted me to. And I will also drink a ginger ale in her honor.

Namast'ay in Bed... Indefinitely.

It’s time to talk about chronic fatigue!

I know what you’re thinking–– that’s just a fancy way to say “tired.”

Extreme, chronic fatigue is a lot like love–– until you’ve experienced it yourself, it’s hard to really “get it.” That’s probably where the comparisons to love end, though. Fatigue sucks.

As a kid, I always thought migraines were just really bad headaches. Then I started getting chronic migraines and I was like “wow, this is a whole different universe of pain.” That’s how fatigue is–– it’s hard to conceptualize the extreme nature of being that physically exhausted until you’ve been there. But I’ll do my best to help explain!

Unless you’re a robot, you probably know what it’s like to feel tired. If you are a robot and are reading this, please email me. I would like to be your friend, like in the movie Bicentennial Man, until I die but you never die and instead just mourn me forever.

For all the non-robots out there, you know what it’s like to be tired. Whether it’s from not getting enough sleep, or a long day at work, or helping a friend move, you’ve maybe been tired a lot! Life is busy! It’s 2016! People always want us to answer all of our emails so promptly!

But take that level of physical exhaustion and now double it a few times, so it’s not just “tired,” but something that alters your thoughts and your joints and your whole being. It makes your body ache and it makes you lose your train of thought when you go to speak. And humor me for a second and imagine that no amount of rest would make that tired go away. You could nap, put your feet up, “rest your eyes” as my grandma would say, but you would still find yourself just as tired. That’s kind of what chronic fatigue is like.

Suffice it to say that sucks, amirite? And a lot of people suffering from chronic fatigue have it as the result of another illness, like Lupus or Endometriosis. For me, I experience chronic fatigue because of my Crohn’s disease, but I’m also treating my Crohn’s with a steroid that gives me insomnia. It’s like the medical life cycle of hell.

A past, flare-free and fun~ life

So why am I telling you all these depressing things about fatigue? Is it so you’ll feel bad and donate to a GoFundMe I’m creating for a new, bionic body that doesn’t get tired? More logically, it’s because it’s important to know these things if you have a fatigue sufferer in your own everyday life–– which many of you probably do.

I’m 24 years old, I live in the third biggest city in America, and I really love to go out with my friends. When I’m not in a Crohn’s flare, my social life often involves 24 hour diners, requesting Beyonce at 4 AM bars, and occasionally puking on my own stylish ankle boots. I tell you all of this because after over a month of being in a flare, I really feel the need to remind the world that I CAN BE FUN, GODDAMMIT.

The problem is that when I’m sick like I am now, the fatigue takes all of that and pretty much says “nope!” For a while I couldn’t even go to work, and now I’m super proud of the days where I can make it through a whole work day and almost immediately pass out when I get home. That energy level makes it a bit hard to do things like go to happy hour or attend a friend’s party.

Life in a flare? More naps, more Netflix, more icy hots.

So if you know someone who suffers from chronic fatigue, or any chronic illness that may be accompanied by it, cut them some slack if they have to leave the party early or can’t make it to whatever cool thing is happening this weekend. Believe me–– they wish they could. They want to be able to do all the “normal” things, but being young and sick isn’t normal. So sometimes it’s important to make allowances and realize that while a night in with Scandal and some tea may sound like a homebody cop out, fatigue isn’t a made up symptom, and it doesn’t just mean you’re “over tired.” Your body physically needs the rest like it needs medicine.

Living with fatigue means constantly fighting your own internal clock for a few more hours to get things done. It means anxiety and feeling like a bad friend when you have to cancel plans because you physically can’t make it out. So fight on, fellow fatiguers! Take a break when you need it! Invest in a onesie and a lavender scented candle! I see you, I support you, and I will now be going to sleep.