Chronic Illness isn’t Cute

Everyone reading this is beautiful in their own right.  I’m a huge proponent of natural beauty,  and I rarely wear makeup. But after years of dealing with chronic illnesses, I know as well as any of you that sometimes, it’s hard to feel cute when you’re ill. Puffy florinef or prednisone cheeks, weird connective tissue disorder scarring, those dark circles under the eyes- and these are only a few of the things I notice when I look in the mirror. Throw in some chunky joint supports and my compression tights? I feel like a walking disaster.

I fimd self care so incredibly important because of this. Taking some time to pamper myself, put on some makeup, a cute outfit, and take some selfies? Some days thay works as well as calling my therapist. Some days it doesn’t,  of course, but hey- I’ll take small victories.

My favorite thing to do when I’m feeling down and ugly is take a relaxing bath. Burn a spa candle, add some pain-relief soak (bonus if it smells good), and relax while reading a book and sipping om some powerade so I don’t pass out. But not everyone can do this, so here are some other suggestions:

-take a walk, or go for a drive. A change of scenery can be just what you need if you’ve been stuck inside.
-do your makeup! Whether you want to go simple (a bit of mascara to open up tired eyes, sneakily applied blush makes your rash or flushing look intentional) or go for a full-on glamour look, the concentration for makeup can take your mind off your bad day, plus you’ll look fabulous at the end.
-Cook some comfort food! Or order in. You deserve it. You always deserve it.
-watch some movies, especially something funny. Nothing cheers me up like a classic Disney movie.
-Call or text a friend. I’m fairly sure studies have shown that talking to friends and family can lift your spirits. If they haven’t,  I’m sure it probably can’t hurt.
-get out of your pajamas. Even if you only put on “real pants” to go to the mailbox, it can be nice to pick out an outfit and try it on!
-read! Whether it’s your favorite blog, a news article,  or a novel, it gets your mind off whatever for a bit.

Obviously not everyone can do all of these tips, and that’s okay. You have to find what works for you! What do you do to get your mood and self-esteem up while dealing with chronic illness?

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Sunday Snippets

I haven’t blogged in a while, so I decided to make a short post while suffering from painsomnia.

-How do the rest of you deal with painsomnia? Personally, I try to read, but sometimes the pain is too much, and sometimes I just can’t find anything that sounds good. I finished the two books from the Grisha Trilogy that are out so far, and I really enjoyed them, but the book I read next, “The Selection,” wasn’t as interesting to me. It might have been partly because I was in more pain while reading “The Selection,” which usually makes me think things are worse than they are.

-I’m now a contributor and twitter manager for my mom’s blog, simplysouthermom.com ! If you like gluten free recipes, product reviews, and crafts, then be sure to check her out. All of the gluten-free recipes are tested by me, the picky celiac, and I have to say, they’re pretty good!

-I’ve recently had trouble digesting almost anything I ate, and suddenly developed an allergy to peanut butter. So far, supplementing with digestive enzymes and cutting out lactose has helped, but I’m waiting on a trip to the gastroenterologist. Has anyone else with celiac had this happen? I haven’t even been glutened, I just kind of…stopped being able to eat anything? 

– I have cool new things planned for this blog, and I’ll be live-blogging a trip to the Gluten Free Wellness Expo in Nashville this spring! More details on that as they come forth, but I’m excited there’s a gluten-free expo so close to me. This way I can try new products and recipes and spice up my gluten free life! I’m definitely tired of plain white gluten free rice, and skinless unseasoned baked chicken breast. (Currently my only two safe foods.)

 

 

Celiac and the Dorm

When I learned I had celiac, I was living in a dorm. I had a microwave, a mini-fridge, a new diagnosis, and no clue what to do next. The dining hall tried to accommodate me, but everything was cross – contaminated and salad gets boring after the 276th consecutive meal consisting entirely of raw veggies with light Italian dressing. (There was only one gluten free dressing on campus, apparently.)

Luckily, I went through this by myself, but you don’t have to. With more celiac awareness than ever,  many campuses have their own celiac support group. If yours doesn’t,  like mine, see if there’s one nearby. My current town has one that’s hosted by the local gluten-free restaurant. 

Talk to your disability services and have them help you contact the dining hall. Our dinners were provided by Sodexo, so it was nice to have a liason between me and the huge company.

If your dining hall is inhospitable or even worse, buffet style, you may need to keep a few food items in your dorm.  You’ll want to anyway for snacks or late night cravings.

When I first entered the world of celiac, I was overwhelmed with gluten free junk food and had no clue what to buy. I tried so many brands and items and wound up throwing them most away. Now, I stick to brands I’ve tried, and eat as many naturally gluten free foods as possible. If I’m craving pretzels or bread, I know I won’t go wrong with glutino, udi’s,  or gratify.

A few other things that saved me during that awful first year of celiac were microwave rice pouches, corn and rice Chex, Greek yogurt, lentil crackers, and hummus. To this day, rice is my go-to when I can’t think of anything to eat.

When did you find out you had celiac? Was it a difficult transition?

Getting It.

Once you get sick, everyone has advice for you. Some of it is good, some of it is bad, and at least some of it is well-meaning. I’ve been told to take alka-seltzer, try yoga, go vegan, lose weight, gain weight, and everything in between.

You also get a lot of weird questions about your illnesses. There are the usual ones, about whether you can eat a certain thing, do a certain thing, and when  you’re going to get better.  (My answers are probably not, probably,  and never, in that order.)

I always think that people can’t surprise me with weirder advice or questions, but they always do. While on a recent trip to visit family, someone sat me down to have a discussion about Ehlers Danlos. I thought I was prepared. Then the first question out of their mouth was “So, how will this benefit you, evolutionarily?”

I was stunned, but unfortunately this type of scenario is common. I’ve developed talking points to steer the conversation away from me if the conversation about my illness gets out if control. I’ve also trained my friends and fiancé to jump in if they see me getting uncomfortable or annoyed. Sometimes,  neither of these measures are enough, and I have to find another way to deflect questions or advice.

I’m not rude to well-meaning people, of course,  but when you have been sick your whole life,  you learn to do what you have to do.

How do you deal with people who just don’t get it? How do you deal with unwanted advice or questions?