Sunday, January 18, 2015

"What is Lyme Disease like/What is the worst part?"

Sometimes you don't have the words to explain what you are feeling. I feel like most people with chronic illnesses and/or depression find that to be true. I feel like because of this they feel extra distant from society. Not only does society not understand, but those with depression, for example, can't explain how crummy they feel besides "I feel really down today, I don't think I can go running." To society that sounds like an excuse. "You're down? Well get up! Let's go." And that's how I saw it too. But not being able to explain how you really feel to make someone understand is enough to drive you into an even deeper depression than before. 

As human beings we are always trying to express how we feel. Some more louder than others, and some in how they talk, or dress. Some in how they do their hair or whatever, it's how they feel. For me it's sweats, glasses, a Nike Tshirt, ponytail, and no make up, everyday? Yup, Lyme Disease! That's me!

So I'm gonna attempt to try and explain what it's like. And you'll find a lot I'll say "that's the worst part" and that's because at times that one thing is really "the worst part". And another day something else might be "the hardest part." It's just a roll of the dice, day to day, hour by hour. So here is my feeble attempt to try and explain and enlighten y'all about my experience so far.

What is the hardest part?

-sometimes it's exhaustion and that is usually what I explain lyme as. When asked what lyme does to me, I'll usually say I'm always tired. But that doesn't even touch it! I can't explain how crippling constant exhaustion and fatigue are. I don't have the words.

-sometimes I feel like an old lady. There is nothing that can get me to run up and down the court. I couldn't do it to save my life. Not because of pain but because I literally can't do it. I physically cannot get myself to run or move the way I should be able to. And part of that is lack of motivation and depression. The problem is when you realize that, it just sends you into deeper depression knowing that you can't do something that should be simple. It's a vicious circle. And it's not just with basketball. It's everyday stuff, like working with kids. I used to dance with them. Play way more games, bench press kids, tell stories. I can't find the energy or the will to make up stories or do any of that other stuff.

-going out with friends and eating something and thinking to yourself, "I'm going to regret this in the morning." Eating a milkshake (or nearly anything sugary of any kind) and knowing because of that deliciousness you are shoving down your gullet you are going to have a really crappy day tomorrow. But you are out with your friends. You haven't hung out with anyone in weeks! So you indulge. And the next day you can't move, the walls are spinning, you ache and the day is just bad. All from a stupid milkshake. And it's not just that, a bowl of ice cream, candy, chocolate! 2 days after Christmas of not caring and eating whatever I want had me super sick! It was the pits!

-The depression. I want to just pound that thing in the face. It is a crippling handicap. Lacking motivation to see people. To talk to people. To be yourself! It changes you. I don't have words to describe this either, and that is also one of the most frustrating parts, I can't explain how I'm feeling a lot of the time. Depressed doesn't cut it, and it just sounds like an excuse coming from my mouth, so I rarely use it or acknowledge it, when I explain how I am feeling. Besides most people don't understand it anyways.

-sometimes, (and this is still part of depression) the worst part is Feeling like you just need to cry... All the time! Wanting to hide! Feeling like you are in a giant pit and each time you try to climb out you inexplicably get deeper and deeper. That's my best analogy. It makes no sense, just like depression.

-Anxiety. Being glued to your bed in the morning because of either being too exhausted and/or having anxiety about the day ahead. Being so anxious that you are just going to sob. Your heart picks up and you breath super fast. And you can't control anything with in your body. Sometimes you shake. And you just feel completely overwhelmed and out of control. Then when it is over you are left exhausted. If you fight the anxiety for control you are even more exhausted. If you let it take over you cry for 2 hours and are exhausted! It's a lose lose.

-Sometimes I eat nothing. Sometimes I eat everything! There is no medium. I can't be satisfied. Either I am starving. Or food sounds disgusting.

- I have said this before but it's not so much a bad day or good day. It's a bad hour or a good hour.

-Going to church is one of the hardest things I'll do during the week, and I hate that. Church shouldn't be hard! You shouldn't go to church and on the way there be thinking of ways you could be invisible and not see people. I hate that! Because I know it's depression! And I know it's not me. So I fight it. Because that part is NOT gonna win!

-Sometimes the hardest part is waking up at 730 am to take 12 pills and then 830 to take another pill that can't be taken with the other 12. And then remembering to take your other pill at 1pm and then take your next pill at 830pm and then 9 and a half at 10! Sometimes it's the biggest chore to have to do. I think all the time, "freak lets just skip out on all this today" I don't because I know that's stupid. And I learned from the mission you don't skip your meds! But some days taking all of them and lugging around your back pack with all your meds in there all day is the hardest part. I feel like my day is ran by alarms on my phone to take my medication.

-Sometimes the hardest part is seeing people's lives go on, and seeing how you still have a year to a year and a half of recovery and treatment. And it's so hard to not compair yourself to all your friends that are getting closer and closer to graduating, and you are over there like "hey, I have only completed 1 semester yippee!"

-Sometimes the hardest part is going to bed because you know that alarm is going off way to early.

-Sometimes it's getting up after your alarm has gone off 3 times. And you have never used a snooze button in your life. You have prided yourself in not snoozing ever. And now you crave to push it one more time, and you find yourself most days of the week jumping out of bed because your mom is calling you up to scriptures and you know you are going to be running late, again.

-Sometimes having lyme I wish that it would give me green bumps on my arms, or a green tongue. Or something on the outside of my body so people can see that how crappy I'm feeling on the inside is on the outside as well. I'll tell someone I'm sick and they will say "really? You don't look sick." And I'll want to point out the bags under my eyes, but even those can be hidden under glasses or if you wear them for so long they just become natural. So I shrug. Sometimes I just wish I could have something on the outside so people could see how real it is. Even cat green eyes would be cool. But that's a plus probably and there isn't really any positives of being a lyme patient. Just all you can eat prescriptions.
I can probably come up with a bunch more of "the worst things" about Lyme disease. But these seem to cover my basic thought process over how I have felt about the disease. And I still fell like I haven't done justice in explaining it, and again, that's because there aren't very many words that can describe how I'm feeling all the time. But these are a few.


-The Lyme Warrior