So this past week I have been making some willful decisions of rebellion. They are bad decisions on my part because they only hurt me. I feel like one of those asshole anarchists in Ottawa. My actions are doing nothing but hurting myself same as those in Ottawa. So what have I been doing?
I have been eating extremely poorly and losing weight. I have only done 3 night feeds since I started trikafta 4 months ago. I have continued drinking my beloved coke and eating high fat nutritionally deficient snacks. I am living my old life. Although in my old life I would counter the bad nutrition with a night of good nutrition. So why the hell am I making these choices?
I am currently in a rebellion phase. Similar to the 3 year old not willing to eat their peas. I am consciously choosing this behaviour because of Trikafta. I am walking a very thin line at the moment. A dangerous thin line. I am stubbornly pushing myself to see how far I can go with real dire consequences. I am being an asshole, truth be told. I am emboldened by my new found improvement in my health and have mentally just stopped fighting. I have been enjoying this freedom but am coming up to the point of no return unless I get my act together. I am writing this as my new manifesto. This is my true pivot. I am admitting my downfall for all to read. I am the most unsuccessful version of myself at this moment. And it stopped last night.
I think I just wanted a vacation from my life. I have been on the struggle bus as a first class passenger for so many years that it felt good to get off. Gawd I wish I hadn’t let myself down. I am ashamed of this fall from grace but I am getting back on the struggle bus gleefully and with renewed hope of much better, smart, healthy choices.
As a CF patient we are told to eat whatever has calories, no matter what it is. We need fat on our bodies to get us through the tough times when getting sicker. Lung function is tied to malnutrition. Bad nutrition, losing weight = bad lung function and further decline. Despite being on trikafta this still holds true. No, I haven’t been struggling lung wise to the level of the pre-trikafta days but it has come down from the beautiful days of the initial start due to my own poor decision making. I am not proud but I am not going any deeper into that tunnel. I know that I need to fuel my body with good food not fast, cheap, garbage. Right now my body is a truck stop and now I need to get it to be a luxury 5 star resort.
I have to do a HUGE mindset shift with feeding my body with healthy choices and not whatever has calories. It doesn’t work that way anymore and if it means I inject a can of nutritionally dense liquid nutrition versus a chocolate bar, that is the new decision to make. It’s going to take a monumental amount of work on my part to switch this brainwashing to a healthy mindset…a lot of work!
My parents and my friend Carol have been providing me with meals when they are able and truthfully those are the most healthy I eat. Especially those from Carol. Thank you Carol, you are my inspiration to try to find a healthy balance in meal prep and meal planning. Right now my diet is serving me no good. If anyone wants to drop off a healthy meal once in awhile I will gladly accept. It’s going to be awhile until I get to my own way of healthy eating. But I am starting with my dinner tonight. I just injected a can of food for lunch instead of eating the bag of Miss Vickies chips. Step 1. So thank you for witnessing my confession here and feel free to keep me accountable. Guilt is a wonderful motivator in this situation. I look forward to the next big change in my life but I know it will take all my might. So now to figure out how to get off my coke addiction …