Were tired. Were exhausted. Were sick. We are NOT lazy.

Im tired. Im so tired i feel like my limbs weigh 30 lbs each. I feel as though the lids of my eyes are made of lead, and all i can do is fight to keep them open for a little longer. I inhale coffee and energy drinks despite the bad effects to be able to get a little bit done throughout my day. Im labeled as lazy. Sometimes the jokes are thrown around without thought and its hard to fault a person for making a genuine mistake, but it hurts. Real, physical, and emotional exhaustion takes over my body on a daily basis and heres what you need to know about it.

1) im not a lazy person. my bedroom and living room tend to reflect that of a poorly organized college student with clothing flung about, jewelry on random tables and nail polish bottles on every surface. The blankets are a permanent fixture of my couch for quick naps and times when i need to lay down and they almost never get put away. This sounds lazy, i could clean. i absolutely could im not saying i dont have it in me but depending on my day i may not have the energy for it. "the spoon theory" is a great example of how my body works on a daily basis and i urge you to check it out. It basically states that on any given day im allotted a certain amount of spoons, each equal to a task or chore or anything i might need to do that day and when they run out, so do i. i can no longer get the things done that i need to. Hense the clothing piles and the dissaray. sometimes its just not in the spoons.

2) when i make plans i make small plans not because i dont like you, not because i dont wanna spend all night living it up and going out but because my body literally cannot handle it. By 8pm i am usually spent (yes, despite the nap i took a few hours ago) and i need to go home and lay down. My heart and my lungs pump at such a high rate to keep my body moving it takes all of my energy to do even small tasks and outings. I need to wear my oxygen and recharge and let my body catch up to where im at. Breathing treatments need to be done to open my airways so i can get the proper amount of oxygen flowing through my system. My social life is barely there and believe me in not happy about it either. Im quite depressed to be honest thinking back on my days and nights downtown living like a 20-something should be.

3) i need to cancel plans. all the time. i make them hoping that ill have some energy to go out but i dont. i make plans to go to your house or go to dinner but i can barely muster taking a shower at times.This type of pure and utter exhaustion is overwhelming and hard to control, a cup of coffee will not solve it but i promise you that the second i feel well again i will raincheck those plans and be there for you!!!

4) most importantly, understand. try your best to understand where im coming from. My illness takes a toll on me that i never thought would be possible. i never imagined by body would need to work this hard to simply stay just enough afloat that i dont drown. I never imagined that one doctors appointment at 9am would mean spending the next few hours sleeping and hoping that when i wake up i can just get this one load of laundry done. I myself never saw a future on oxygen as common as it is. i never saw my friends leave simply because i can never go out, or when i do its mainly chair dancing and just talking because anything else is simply too tiring. Please be patient with us, its hard to have friends and family who struggle and to watch them go though that but its harder to be the one whos struggling knowing how frustrated the people around you are getting.

Lately ive had a lot of trouble with this topic. ive been so tired to the point ive lost entire days, my family tries their best to understand but sometimes the eye rolls and jokes come out and its painful to know what they think of me. It hurts to know they think i lay here for no reason while my clothes pile up and its hard to hear my niece jokes on how messy i am or how she constantly brings up the times i sleep till late in the day. i want so desperately to have a working body that doesnt need the rest that this one does. It crushes me at times, I can try harder, but i also know my limits. I know when i need a break.

Im Rachel Whidden and these are my excuses.

ex·cuse

verb

ikˈskyo͞oz/

1. 1.

   attempt to lessen the blame attaching to (a fault or offense); seek to defend or justify.
2. -google dictionary

This morning i woke up not to the obnoxious "good morning" song i use for my alarm tone, but to the sun coming in my window. I was in a warm bed with too many blankets and my puppy sleeping in my arms as always...a seemingly perfect morning, yet i could barely open my eyes. I felt physically exhausted, possibly from the work it took to breathe all night or possibly from the constant cough attacks waking me up every few hours. Without thinking i reached down to the nebulizer that hasn't left my bedside in days and poured a vial of albuterol into the cup knowing it'd be almost impossible to start my day with airways that refuse to open. I have a list of things to get done today, a few things id like to do just for me, and a list of "excuses" 10 miles long already forming in my mind for why i can only do half of it. I'm not ashamed to use them, they're perfectly valid, and heres why.

When i first started getting sicker i felt ashamed at the menial tasks i could not complete on my own. I felt like less of a person every time i asked for help to bring the groceries in or heard the snickers from my coworkers saying "shes soooo slow, i swear that girl is made of molasses". The looks of pure disgust when i had to excuse myself from the sales floor to break down after being yelled at for spreading my sickness to customers or the self hatred i formed towards myself as i tried desperately to stifle my cough so the band of assholes following me down the school hallways faking a cough and laughing at me would hopefully disband when they ran out of fuel.

I tried apologizing for my ongoing "cold" and i laughed it off with every joke about how maybe if i didn't smoke so much id be fine. i made every excuse for my illness except for the one that really mattered : i am chronically ill. This itself is technically an excuse. Its a justification for why i cannot do something or why i am the way that i am. Its a reason that i need to sleep and take various pills before each and every social event in order to feel well enough to do said thing. Ive always felt that making excuses based on my illness made me a weaker person. Thankfully i now realize that's not true.

I try to stay as busy as possible but the behind the scenes is brutal. I go to dinner after a 4 hour nap and an anti nausea pill. I see a movie after a small nap and always before 8pm as being out too much later just isn't something can handle. I cancel plans left and right because i know that while id love to go to your birthday party my body cant physically handle being out that night. I make excuses right and left and I'm done apologizing for them. As should everyone with a chronic illness. Know your limits. Know that a 45 min workout two days a week is an accomplishment when every fiber of your being in struggling to keep going. Know that the dinner your going to tonight is a big deal and order that steak cause your a bad ass bitch and you deserve it!! You did laundry today? Your a goddamn rock star and you deserve awards!! Being sick isn't easy. Allow yourself the power to recognize what you can and cannot do. The people who love and support you will understand every step of the way.

I implore you to check out the spoon theory for a well written explanation on how we make the decisions on what to do each day and why we cannot fit as much into our days as you'd like us to.

make your excuses. don't apologize for them. this is your life and your body. own it, do what you can, and accept what you cant. your worth far too much in this world to feel bad about ow others perceive you. the battles you face are long and they're hard but as long as you do what you can when you can baby your golden!!

*as a side note id like to include the links to my new posts ive been writing for CBS Chicago, http://chicago.cbslocal.com/2016/02/10/cystic-fibrosis-lung-transplant/?cid=facebook_CBS_Chicago

 im very excited to bring awareness to the struggles and triumphs of being a 20-something chronically ill woman navigating life between sick days and transplant meeting. The latest post is my third one and the links to the first two are at the bottom of the publication as well as a link to my new facebook page as im no longer accepting randon friend requests on my personal FB. My page will have updates on my health, my blogs, and my day to day for anyone interested in following me!! Also feel free to check out my instagram link on the side of this post in the about me section. Thank you for all the love adn support!! & Thank you for the patience between posts as lately my health has declined quite dramatically and i havent had the time or energy to post regularly as before. I appreciate all the love and feedback ive gotten so far with these posts and its an honor to have impacted so many lives. <3

My Illness is Invisible, But I am Not.

This morning i woke up and took the puppy out like every other morning, made a cup of tea to drink while i do my treatments, and got all my meds ready. Suddenly i had a coughing fit and when it was over the tissue i grabbed was filled with bright red blood. Yet i dont panic. I throw it away and i finish strapping on my vest and filling my nebulizer cup with the vial of albuterol i pulled out along with all my other meds and start my treatments with a few extra tissues on hand and an old t shirt so i dont stain my pj tank if i cough more up suddenly. This is my CF life. This is something i dont worry about unless it gets worse. This is just something ill mention at my next appointment, but its no big deal. This is what nobody sees. People look at me and see a fairly normal girl, sure i have oxygen on, but i dont look sick. My face is full and i laugh and smile and run errands and go out with my friends. What they cant see is how hard my heart is working to keep my lungs moving. The strain makes my normal heart rate in the 100s at times. They cant see the build up of secretions making me work for every breath i take. Thick sticky mucus that clogs my airways and chokes me on a daily basis. Strangers on the street dont know that ill spend hours today inhaling medicines and working out my lungs just to stay stable at a measely 28% lung function, they dont know that by the end of the day ill have taken close to 30 pills to maintain my weight, mental stability, vitamin levels, digestion, control pain, and fix various other things that my body cant maintain properly on its own. Yet youd never know. This is where the term invisible illness comes from, There are 30,000 other people with CF in this country going through this similar routine and youd never guess. The things we go through seem impossible to most, yet this is our life. This is normal. Lately ive been really aware of the lack of awareness to invisible illnesses, not just Cystic Fibrosis, but so many others as well. Ive gained friends with struggles youd never know about yet they're barely hanging on. If you take anything away from reading this today its just be aware. Be aware of everyone around you. When you see a young girl park in the handicapped spot your not a hero when you tell her she should be ashamed to take that spot from someone who needs it because she probably needs it more than you know. When you see a man coughing dont assume hes a bag of germs and give him dirty looks his lungs may be doing the best they can. Next time you make fun of someone for being skin and bones because "real women have curves" keep in mind all the women who struggle day in and day out to eat as much as they can but their bodies refuse to take the nutrition they consume. Be aware that these struggles exist and just cause you cant see them doesnt make them non existent. My disease is very real and i feel it every day.