I must confess that my bright cheery disposition you see all the time is just a front. Ha, that’s a front. I am far from bright and cheery.LOL. I do have to admit that I am very good at hiding a bad day from the world. Most of those days I stay off the internet. It’s only the really awful ones that I will share and thats for pure cystic fibrosis awareness. Everyone needs to self-reflect when I post those days, why? Because on those days I am just trying to survive minute to minute, breath by breath and you, the healthy, should take a look at what irks you that day and just let it go because nothing is harder than not being able to breathe- no matter your situation.
My everyday is filled with routine and compliance which is non-negotiable. The only variables in my day is what 3 things on my to do list will I be able to achieve. I start the morning in rough shape. My lungs have ‘rested’ all night (I say rest very loosely as there is nothing restful about badly damaged lungs), my chest has seized up from lying down, my breaths are shallow as that’s how we all breathe when sleeping, my stomach is full from feeding 2000 calories and going from prone to sitting up burns 1000 of those calories alone.
Moving about in the morning with no meds on board is wicked hard. Everything is a struggle. I need to get the bronchodialators into my lungs so I can just catch a breath. Even before getting dressed because that takes energy. From there I start the other 5 meds to do. Once I manage to do the mandatory I can finally think about putting in my contacts, having a shower, getting Cali fed and watered, check my emails etc, and then lay out the day ahead of me. I am chronically in pain. Some days I can handle it with my usual non-addicting pain meds and other days I need to ramp it up a notch with an extra dose or a good long nap.
So what happens on the bad days? Well first of all I struggle to even just get out of bed. When I know I am going to have a tough go I am filled with some anxiety. I look at the pile of clothes on my bathroom floor and think ‘crap, I can’t even get those picked up today’. I try to gather my housecoat and head downstairs but am paralyzed by a coughing fit. I sit for 10 minutes just catching what little breath I have left. Cali sits patiently with me pawing for a chin rub. Usually on the bad days my pain is a 9/10 and makes blinking unbearable. Doing the mandatory stuff is extremely difficult when all I can manage is getting to the couch. On these days that begin with such struggle I am mad. I am mad because I have a life to live and I know that today will be a nothing day. A day of just surviving while trying to find some joy in the dark. I still fight to try to exercise, eat, get my meds done and if it takes me 7 hours then it takes me 7 hours. I don’t want to count these days of my life cause they suck. What makes these days even worse is I question whether I did something stupid like staying up to late or drinking too much coke or not walking long enough. Did I do this to myself? I have to remind myself that CF is an asshole and despite doing everything right it still knocks me out.
The very best I can ask for with my health is stability. To know that, yes, the day is long and there’s lots to do but once you get everything done you can resume the good part of your life. To know that my Monday should look the same as my Friday. Stability is a gift. One I am very fortunate to have a lot of. I know my CF can be much worse. I’m not sure I could handle that? I know I’m strong but even steel can melt.
I realized something really poignant last Monday and its that I am never happy with my performances, whether its in the gym, at school, as a business owner, a speaker or whatever. I set these ridiculous high standards for myself and I never let myself just celebrate what I could do. I’ve been struggling with a little exacerbation of my lungs which I self-diagnosed and started a cycle of high dose oral antibiotics. I knew I had something going on as I could feel the inflammation in my lungs which were pleuritic. That just means the area surrounding the chest wall was inflamed from infection and/or fluid. I have gotten rid of that but its set me back a bit from the great workouts I was doing in Edmonton. My point is this: I just did the OPEN workout 18.1, which is a CrossFit workout that over 160000 athletes perform each week for five weeks to see how we stack up worldwide. Its hard, its scary and it tests my limits. I managed to do 86 reps of 3 different movements and instead of celebrating that and giving myself a huge high five I think I should have done better. Like how crazy is that? I just performed a wicked hard workout- one that many in the world could not do with good lungs and I beat myself up because I think I sucked. God damn I need a reality check. I promise to you and to myself, from this moment forward, that I am going to celebrate me and put a smile on my face and maybe even laugh! That’s finding the joy in the dark. I also promise that I will not over analyze every gd thing I do. Just.enjoy.the.victory. Because it is just that, a victory.
So on that note I realized that every bad day has some joy to be found and I am going to find it. I will also allow myself to be mad,disappointed, frustrated and scared when I do have these bad days and I will also let myself off the hook. I will let myself just accept the day as it is and know that tomorrow is a new start. I can’t control what I can’t control. I’ve had some bad days lately and I have mentally had to tell myself to get up and fight. Thank you God for being that voice.
Get busy livin’ or get busy dyin’.
N
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