navigating the 20-somethings, chronically ill style.

I'm a funny girl, i have wit, i can make you laugh. I can take your jokes and throw them right back at you without skipping a beat. I'm intelligent. Ill keep a conversation going for hours and really get into it. I'm beautiful even when i first wake up and look like i just got off my flight from Poland after binge drinking for 3 days. I'm 25 years old and I'm single and i have the whole world and everyone in it directly in front of me and here i sit doing nothing with it. I'm not a lazy person i didn't skip college to live in my sisters house and leach off of her. I'm not a druggie who cant hold a job or make a commitment. I'm not a girl who found a man to buy her whatever she wants and spends her time sitting back with her hand out waiting for favors. I'm a girl who has a chronic illness and being sick is my full time job. Lets go back to intelligent and do some math. i take, on average, 42 pills per day. I do, on average, 2.5 hours of breathing treatments and chest physical therapy a day, and each night I'm hooked up for 7 hours to a machine that force feeds me nutrition formula. One week for me is 294 pills, 17.5 hours of breathing treatments, and 49 hours of feedings. Add in grocery shopping. Add in time with friends and family. Add in taking care of myself and my dog, doing things i need to do around the house, running errands, and constant doctors appointments. With my lung function these small tasks become big tasks that drain my energy fast and leave me exhausted. My meds suck my energy, others make me shaky to the point that getting anything done is pretty hard, they mess with my mood and my motivation.

Lets jump to being 25 with the world in front of me. My friends are finding stable jobs, they re moving out and getting engaged, they re having children they re becoming the people that most people become and i love that, i love to see how well my friends are doing and i love to see what they've accomplished but a small part of me is jealous. I should have the world in my hands. I should be out doing great things, but when someone asks me what i do i have to look at the ground and say nothing. I dont do anything. Which of course isn't true i just told you what i do, i keep myself alive and its a big job, but for all intents and purposes in this situation its nothing. The gut reaction is that I'm a bum. I see it in their eyes and yes i can explain all the math and the pills and the treatments, and the whole carrying oxygen around a work environment, and the exhaustion, but lately Ive been saying nothing. Dating is damn near impossible with tubes on your face and hospital visits that last months, but there are good men out there who can look past all that....until they realize that with you a future may not be possible. Kids aren't gonna happen, no white picket fence with 2 babies and a dog. Trying to navigate life is hard, In these years meant to figure out what i want from life and where i want my life to go im barely breathing waiting on a call for new lungs. These extra obstacles are making it even more difficult.....yet I'm not all that mad. I feel like i should be, i should be asking why on Earth do i have to go through this but I'm not. I have a perspective not many people have, I don't work so when a friend is free i usually am too and with limited time in this world i take all the opportunities i can get to see the people i love. I get frustrated about not having an income but i always make it work. Its hard to get a date and hold on to em but I'm a firm believer that a piece of metal i drag behind me in no way reflects my personality and i wont be alone forever. I see statuses about student loans and normal life hardships and i realize that everyone has it tough right now. Its part of being a 20-something, and each persons struggles are just as bad to them as mine are to me, theres no such thing as a life thats just a walk in the park. This is my normal. All i can do is navigate it the best i can and hope that in time my new lungs will come and i can log onto this blog and complain to all of you about how hard it is to be a 20-something in the real world working and paying for college. I think that all in all im doing alright, im getting through it, sickness adds challenges but i always come out stronger than when i went in. Ive got this, and im looking forward to seeing what the rest of my 20's has in store for me. Fingers crossed for a bit more normalcy though!!