The More You Know (About Me)

When people ask me if I'm ok I generally give them the "I'm fine or I'm ok" line. I guess it's because I don't want to let anyone down, I don't want to people to feel bad for me, and I don't want to be a burden to anyone. From the outside, it looks like I have my shit together. But on the inside, I'm hurting, physically and mentally. I have chronic fatigue, Hashimoto's, migraines from Intracranial Hypertension, IBS, and anxiety. That's all on a good day. It's a nice little cocktail of yummy disorders and symptoms. 

Chronic illness can be very isolating. If you see me out one day have a great time, please don't assume it's like that every day. It's not. You don't see the days where I spend my time in bed or on the couch because of the pain. You don't see me laying in the dark to block out the light that's making my migraine worse. You don't see me laying on the bathroom floor in the fetal position because my insides are slowly killing me. You may see a picture of me and think "oh she looks great! She doesn't look sick!" There's a reason why invisible illnesses are called invisible. It doesn't mean I'm not in pain. Most likely I am. That doesn't mean I shouldn't get out and see the beauty life has to offer. A picture cannot always tell you if someone is sick or not. Don't always assume you know what a person is going through just by looking at their photo. 

For the most part, I'm a pretty positive person. I try to always look on the bright side of things. I choose happiness and positivity. But I have my days. Everyone has their days and they're allowed to have them. Here's some things as my friend or family member you should know about when it comes to me being chronically sick.

Please don't have the same expectations from me.

I have limitations. I know my limits. I can't go on rollercoasters anymore. I can't bungee jump. Running a marathon isn't for me. If those are the kind of things you're into, enjoy them! It's just going to have to be without me. Just please don't rub it in my face and please don't push me to do it. 

My life is different from yours.

Not only do I have my own health issues to deal with, I am also a caregiver for my mom who has MS. Between the two of us, a lot of our time is spent at various doctors offices. We also spend a lot time advocating for ourselves and attend events related to our diseases. Along with all of our appointments, we spend a lot time battling various symptoms and side effects from medications. Being chronically ill is time consuming and a full-time job. It's a job we didn't apply for, and we're not getting paid the big bucks to have them.

Don't compare your tiredness to my fatigue.

Being tired and fatigue are two different things. Being tired is staying up to 2 a.m. and then having to work at 7 a.m. Being fatigue is a constant, relentless exhaustion. You can sleep 8, 10, or 12 hours a day and you still wake up exhausted. You can have 1 cup or 6 cups of coffee and you're still exhausted. Your eyes are always heavy. Sometimes the fatigue so bad that even my eyelashes hurt! Fatigue makes me nauseous, irritable, confused, and helpless. I feel it all over my body, every second, of every day. 

I need time to recover.

If I go out the night before, don't assume I can go out the next day. Sometimes I can, other times I need a day to recover. Going out can take up all my energy and deplete me of everything I got. Some days I need to lay on the couch all day and rest. Please be ok with that. 

Don't talk about the "C" word.

Cures. We all want one. Cures are something most of us will never see in our lifetime. I appreciate the diet and exercise routine that your cousins aunts coworkers mailman has tried, but spare me. Don't you think I've already thought of those options? Don't you think I've already tried it?

I'm not whining.

I live my life pretty positively. But I'm human. I have days where I hate everything. I have days where I can be negative. Everyone is allowed to have those days. Instead of thinking that I'm complaining, comfort me, reassure me. Hold my hand and tell me it's going to be alright. Hug me tight. Listen to me. Hear me. Believe me. Accept me. Love me.