For the PFAM carnival, Duncan wants to know what my illness feels like. Well, Duncan, since you asked, my illness feels like ASDLKHGA[OYI2(&^#!$LJBFAPDGI09*^@~(*^{KLJAHSDGO[YAWEGFB;L. Got it? Oh wait, that’s how I feel about my illness.

imagine being the pea (rather than the princess)

What does my illness feel like? Well, it’s awful. There are no words to describe it. It makes you feel like you’re buried under a mountain of mattresses and like you can’t get out. In order to do anything (like walking across the room and putting your laundry away), you feel like you’re a robot trying to learn how to walk while waist-deep in an ocean of molasses. Things like light, smell, food, and inpatient people stress me out and stress causes pain which causes fatigue which causes me to lose weight (but also have something to talk about in therapy.) Illness numbs my mind so I easily lose my train of thought or just can’t think because wait, WHAT are we talking about again? That’s what chronic fatigue syndrome feels like.

Plus the pain. I don’t have any way to adequately describe the pain. Except that a pain scale of 1-10 is just WAY too simplistic. I can tell you about persistent, throbbing, intense, background, fluctuating, numbing, stabbing, and localized pain. I can tell you about achy pain, about the feeling that you can’t use your eyes or ears correctly & you guess that can be called pain too?

Ehlers-Danlos syndrome or a connective tissue disorder (if that’s what I have). Well, pretty much that means that anything is more dangerous, so you’re constantly having to be alert. Try doing that at the same time as battle brain fog. There’s no point in trying to have energy for anything else. Anyways, I have to be really careful when I walk or reach for things or lay down or write or whatever, because my body is super flexible. That means I can sit in some really awkward position and not even realize it until six months later I’m trying to figure out what that stabbing pain is in my hip. Oh? Sitting with your legs double-crossed isn’t normal??? Ooops. My left elbow gets pulled out of joint pretty easily, so I have to make sure I don’t slam that elbow against the wall while I’m asleep or try to lift things with just my left arm. It means that I fall really easily so I have to wear tennis shoes all the time, and even then I’ve fallen on flat surfaces and had to spend months in physical therapy. It means that I can’t wear fun shoes like all my friends and they like to make fun of me for it. It means that I have to wear long sleeves and leggings if I want to be outside at night in the summer; why? Because I bruise really easily and mosquito bites turn into bruises and then I look like a victim of child abuse or maybe domestic violence now that I’m older. It also means that I don’t have a typical response to almost anything, so add a huge amount of frustration to everything.

in case you forgot what Oscar the Grouch typically looks like

It means that I come across as a very cynical person. Abigail, are you sure you need to wear leggings to watch fireworks? I mean, why are you so worried about people thinking you’re a victim of abuse? That’s ridiculous. Everyone can see that you’re happy. OR Abigail, why don’t you ever want to have a good time? Maybe things will just be fine this time. Mostly, I’m just very practical. I’ve discovered things like if I’m around loud noises for an hour, sometimes I’ll be in bed for four hours recovering. So guess what? Going to that church service just isn’t worth it. Or it takes forever for those bruises to heal, so I’m not taking my chances. Because people do ask.

I’ve become an Eeyore. He’s cynical and doesn’t look at the bright side of anything. But, he’s still pretty happy. He’s not like Oscar the Grouch. He has friends, and he cares about them. He likes the color purple and knows that going to a birthday party is important. He just looks at life differently. Because that’s who he is. And so, most of the time, I have Eeyore days. I’m being honest & transparent. That might come across as Eeyore the cynical. And that’s okay. Because I like Eeyore.

In fact, I’ve decorated my bedroom with an Eeyore theme.* Just a little bit. And more in a sophisticated way than nursery decor. It’s not super obvious because I didn’t want to overwhelm my friends with doom and gloom. But seeing him makes me happy. Because he gets me. That life is hard. And painful. And exhausting. So he’s peeking out of various nooks and crannies.

And to give you a glimpse of what my room could look like, I compiled this treasury on etsy. It’s a bit much, especially since I have nowhere near that many light switches to cover. But it’s the general sentiment.

with love (and honesty),

Abigail Cashelle

___

*I gravitate towards smiling Eeyore though. He’s surprising not that hard to find. But you do have to look. And that’s the Eeyore I know.

Advertisements

One thought on “What Chronic Fatigue Syndrome & Ehlers-Danlos Syndrome Feel Like

Thoughts?

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s