TBH

It is 6:08 PM on a Friday night. In summer. In the third largest city in America.

I am sitting on my couch, listening to a relaxation playlist on Spotify while my cat kneads my stomach fat.

The excitement of my night will likely be what marinade I choose for the fresh salmon I bought on my way home from work, and what movie I choose on Netflix.

Such has been an accurate description of almost every Friday night I’ve had for the last 5 months.

The most exciting thing I did this weekend was read in the park

Sometimes, this is fine. Sometimes I relish in the slow and hazy schedule of not being able to have a real schedule. I tell myself that I am super zen about the whole thing and that I have accepted my current lot in life. That I’m cool with spending age 24, the so-called “prime of my life,” in a health-induced purgatory because “it is what it is.” Sometimes I mean it.

Sometimes, this is really not fine. This week, I had a good day. A day where for most of it, I pretty much forgot I was sick at all. I went grocery shopping, did some cooking, got my nails done, and went to a wonderful dinner with a group of my closest friends. I ate great food on a patio in the warm weather and told stories and laughed and read our horoscopes. I actually found myself thinking, as I walked home, “maybe I’m fine. Maybe this sickness is going away, and I’m being overly-cautious by passing on social plans for fear of making myself worse.”

The next day was one of the worst symptom days I’ve had in a long time. It felt personal–– like a jab from the universe, saying “you think you’re normal? You think you can do all the things a healthy person can do and not pay for it? You can’t. In case you’d forgotten.”

That night, I laid in bed trying and failing at sleep. I was under the assault of a bone-crushing fatigue that made it impossible to do anything but half-way watch Law & Order reruns and stare at my cat until he got unnerved and turned around.

Tuesday night, me being a normal human at dinner with friends

Sometimes, I have a wise thing to say. A piece of advice. Something I’ve learned from my illness. Something being sick has made me more aware of that I’m thankful for.

Other nights, like that one, or tonight, I don’t. I’m just mad, and sad, and sick. Usually I think I’m making my illness more palatable for the universe by adding a happy spin on the end. “My joints hurt so bad I can’t think–– but it’s fine, I’m really getting to catch up on my reading!” I rarely leave it at “Hey–– I feel like a pile of hot garbage today. That is all.” But I figure sometimes, it’s more honest to leave it at that. And if I truly want people to have awareness of what it’s like to live with a chronic illness, I should be honest, right? Sometimes you have a day that doesn’t end with a bright shiny spin of positivity, and that’s okay, too. Your life is not a PR angle, it’s just your life.

So in the spirit of honesty and not sugarcoating: Hey–– I feel like a pile of hot garbage today. That is all.

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.