I am thankful for A LOT. More then words can probably list. But most of all I am thankful for the people who love me for me & don't pass judgement. Throughout this disease I have got my fair share of sarcastic comments from people who I believed to be my friends. When I have a good day & I am active, or get dressed up to celebrate a holiday, I feel like its a huge accomplishment. Often times I cry tears of joy because I can't believe I was able to just get out of bed. So I was shocked when people I loved came at me with negative comments instead of being happy for me. I want the people I love to feel the same joy I feel when I get to be normal for a brief moment & do things they get to do every day and take for granted. I live in my bed 24/7, and have been for this whole year. Getting to feel normal is AMAZING, and of course I'd love to celebrate that with those I love. But that hasn't always been the case.. Words of support like "That's so awesome you could do that," or "I'm glad you got to have a good day," are things that make my heart happy. When I love people I love them deeply. I hate to see them hurting & I am beyond the moon when they feel joy. But more times than none lately with some friends I feel like it's an interrogation, even if its not on purpose. I hate that I have to explain why I do this & why I do that, but then why I'm not better & can't drive somewhere. It sucks (to put it bluntly).
So here is my explanation to the world. Am I healthy? No. I actually spend 99% of my time laying in my bed in my pajamas, sleeping approximately 13 hours a night. I am almost always in some kind of pain, and yes it's a huge accomplishment for me to shower or do any simple task on most days. I eat 100% of my meals in bed because its too painful & exhausting to go downstairs for it. It's a job to get all the calories I need in every day when I am almost always nauseous. I survive partly due to frequent Epsom salt baths & most my time is spent remembering when I need to take my next medicine or how to manage the pain I have at the moment. I take 15+ supplements/meds daily to simply function.
Life isn't glamorous. It's not something amazing. The things we all do in regular life on a daily basis are taken for granted until you can no longer do then anymore & I learned that. So amongst all the difficulty I face daily I try to keep as much normal as possible. And when a birthday or holiday comes my family makes a big deal out of it to cheer me up & remind me I'm still myself underneath it all. We all dress up, I put on makeup (once in a blue moon) & we enjoy the day, the moment, the time to the fullest. I am reminded no matter how crummy I feel on the inside I can also feel pretty. It's been a long 11 months going through everything & when I feel good I know I deserve it to enjoy it.
People will always judge without taking the time to know everything. But until you have walked a mile in my shoes I don't want to hear negative opinions. I simply don't have time for it. I have always been a positive, bubbly, talkative & happy individual. And just because I was dealt a bad set of cards I'm not going to lay down & die and let myself fall into a depression. I can get through this pouting being a Debby downer, or I can get through this being positive & happy even if I have to smile through the pain. Lyme disease has taken away my freedom & my health, but I won't let it take my livelihood. I'm sorry if you think I look "too good" to be sick, or I'm "too happy & normal sounding to be as bad as I say I am." If anyone honestly believes that please feel free to exit my life.
And for my amazing friends who love me through all of this (you know who you are), I will forever be grateful for that unconditional support. I know I couldn't keep pushing through without it. It makes me feel empowered when i'm motivated by saying how glad you are I had a good day, or compliment me on achievements I've made health wise. That positive reinforcement reminds me why I'm still fighting day in & day out.
Lastly, for everyone who can relate to what I just talked about, know that it does slowly get better. Sometimes I wondered if people are so bothered by joy to criticize it then why on earth are they still paying attention? Then I realized a lot of individuals like to hear that someone else has it worse then them. But when they see a picture of me & I'm not the horrible looking person they imagined, it's like annoying to them. I guess I burst some bubbles along the way. Sorry, I'm not letting myself go, I'm still me. If you want to see a disaster open up a gossip magazine. Just know there will always be those who pass judgement or want to put you under a microscope. If you haven't yet, unfriend those people... It's not worth it. And then remind yourself of the awesome, glorious, wonderful friends you DO have. They rock, and they will be there through thick or thin the rest of your life :)