CF hurts. That is the one thing I wish people knew or could understand. It hurts physically, emotionally, and spiritually.
Let me start with the physical. I ache every single day. Imagine coughing so hard your whole body tenses and hurts, so hard that you pull muscles and even crack ribs. So hard you get an instant headache. So hard you are afraid to eat for fear of only throwing it up later. So hard you can't control you bladder and pee yourself or even worse poop yourself because the meds that are suppose to control that aren't working right either. And now you have to clean yourself and whatever else you may have messed on all while trying to catch your breath from the coughing fit that caused it all. Imagine every single breath you take hurting, hurting so much you take shorter breaths which only make matters worse and you have to use O2 because your stats drop and your heart rate climbs. Now imagine doing this several times a day. It all might not happen everytime I have a coughing fit, but it hurts everytime I cough. I also have arthritis and osteopenia caused from CF, which causes more pains else where. I take ibprophen twice a day to help with the pain, and when I pull muscles and it gets real bad I have to take muscle relaxers and stronger pain meds.
Let's move on to the emotional. I break down more than I'd like to admit. Those coughing episodes I just spoke of are exhausting. I'm a mom and wife, although lately I'm not very good at either. I sleep about 12 hours a day if not more. This is because of 2 reasons 1. My body physically requires more sleep to breath than most. 2. On top of that I also have narcolepsy which causes excessive sleepiness. I do have a medication to help me stay awake more often, but that causes weight loss I cannot afford to lose. Not to mention imagine having energy to do things but your body failing you at every attempt to do things, you your stuck with all this energy to do nothing or fight your body doing so. So I don't take the med to keep me awake. Colton hates how much I sleep. So I'm left with the guilt of sleeping away my time with Colton that I know is limited because he is growing up so fast. Then there's the hurt of not having enough energy or air to go outside with him and play in the snow, make snowmen, go sledding. So I watch out the window and cry while he does these things with his dad or my mom. I'm also riddled with guilt of not being a good housewife. Brad works everyday at an unthankful job to provide a good life for us, but then he comes home to do the work I should be doing. Cooking, cleaning, laundry, all the things I use to be able to do. He does these things without complaint and completely forgiving to me for not being able to all while helping me to try and stay healthy. He calls everyday to check on me and worries about me relentlessly. I'm ashamed to say I'm not always nice to him. I'm terrible at being empathic to him or anyone really that doesn't have a grave disease when they are sick. I just think must be nice to only have a cold, to wake up and all that's wrong is your back or head hurts, must be nice to know after a while you'll be better and back to your life. I don't have that luxury as many don't. So here I am feeling bad for not feeling bad! Well sometimes I don't feel bad about not feeling bad. But for Brad I do, because I'm his wife and he should be able to complain to me without feeling like I'm just gonna tell him to suck it up, which I have said before. I break down the most when I'm sick, when I'm sick I get scared, when I get scared I cry, yell, and have been known to throw and break stuff. I'm scared I'm going to die, I'm not scared of dying, I'm scared of what my death will do to my family and friends, most importantly Brad and Colton. So I fight, when I feel like giving in when this disease is ravaging my body I fight, when I think I can't do another treatment I fight and do it anyways, when I'm covered in my own body fluids and want to scream, I say fuck you CF and I fight. I am almost always emotional drained from the battle that goes on between my body, my heart, and my disease.
Last but certainly not least is my spiritual well being. I was raised on Prayers, I am living proof to the power of prayer. I believe in God and I believe Jesus will come back for us all one day. My spirituality has not always been strong and I go through times of wavering in my faith. I think it's natural with all I go through to have those seeds of doubt sometimes. Then Colton will do something so profound I can't doubt Gods plan for me and my family. It all wears on me like a heavy cloak I can't take off, like I was cursed with this burden and I must carry it to my death. I don't know His plan for my life and more often than I'd like to admit I ask why, that answer has not come yet. Or maybe it has and I missed it. Either way I just continue to pray for myself, that I may be worthy of His kingdom when my time comes.
I'm sorry if this disappoints readers who are use to my usual positive attitude about life and CF. This is the truth of my existence right now and I will always be honest about that. I'm having bad days but it's not a bad life, and when it gets better I'm sure I'll have a more positive look on it again. It just gets hard sometimes to always keep that smile when the truth is all I want to do is cry.