A Day In My Life With Cystic Fibrosis
Today I want to share a little look inside my life. I don’t talk a whole lot about CF, and that’s something I’m slowly bringing more into the open as my online platform grows. For me, it’s kinda just the way life has always been, so while I realize it’s not everyone’s normal, it also doesn’t feel like that big of a deal to me. It’s what I’ve always known.
Still, I want to answer some questions I’ve been receiving, and maybe offer hope and inspiration to parents of babies and children with CF. Not every case is the same, most are really different and there’s sort of a range of severity with CF. I have a pretty mild case that hasn’t impacted my life too awful much- and to be totally honest I’ve gotten away with being totally non-compliant with the doctor’s orders for most of my life, outside of 2 or 3 exacerbations that led to hospitalizations over the past decade. Other than those 3 two-week bouts of illness, most people can’t even tell I have CF from the outside looking in, and it really hasn’t held me back in life outside of difficulties maintaining jobs in the healthcare field I used to be so passionate about.
For anyone who doesn’t know, cystic fibrosis is a genetic disorder of the pancreas that basically causes all of the mucus linings in the body (especially the lungs and digestive system) to be super thick and sticky. It makes our lungs a stellar breading ground for bacteria and other infections, and makes things like sinus infections and the common cold potentially life-threatening.
Disclaimer: I’m not a medical professional and no part of this post is medical advice. I’m just sharing my experience and thoughts as someone with cystic fibrosis. ALWAYS run things by your doc, don’t just do what I do please. Take care of yourself. You’re worth it.
Anyway, here’s a look inside my CF routines and how they fit into my lifestyle. :)
I’m an unusual CFer in that I’m actually vegan (in fact, I run a vegan blog called Oh, She’s Vegan!) and I am able to work from home as a spiritual lifestyle coach and virtual assistant + graphic/website designer. Being able to be at home and have so much flexibility in my schedule is a huge weight off my shoulders when it comes to my health. It makes living with CF almost effortless, relative to what I know a lot of other adults with CF are facing.
I aim to do two treatments per day.
One takes 20 minutes, the other takes 40 because of the different medications and breathing exercises I do.
A treatment, for me, consists of:
an Albuterol inhaler (which helps to open my airways so the meds can get in and the mucus can get out)
nebulized 7% hypertonic saline (aka salt water. This helps dry up the mucus and also irritates my lungs to help me cough. I’m honestly not sure if the coughing part is what it’s intended to do or just a happy accident but it sure works! Also, this stuff hurts to breathe in, you’re literally inhaling salt.)
& during the longer treatments I also have nebulized Pulmozyme (which helps to reduce inflammation and thin the mucus in my lungs over time so that it’s easier to get out)
I’ll also use airway clearance equipment like the Aerobika or Flutter for breathing exercises and to help loosen any stuff stuck in my lungs.
Usually there’s not really anything there and this has no effect on me, but if I’m even just starting to catch a cold or something, there’s a huge difference in what this does. It really helps keep mucus from hanging out in my lungs and growing bacteria and fungus rapidly- which is what most CF hospitalizations are due to. There are other methods of airway clearance, but these are what I use.
Outside of my treatments, I still take a lot of personal responsibility for my physical health.
This looks like a little cardio and a deep breathing practice I usually do through yoga.
I try to go for a quick run every single day- just around the block usually, and then 2-3 times per week I do Blogilates or another workout from home. I love Blogilates because she really gets me out of my head and puts me in a mindset to have more fun in life, which I think is really important!
I’ll follow my run and treatment up with a good yoga session. Sometimes I will follow yoga videos online, other times I go through my own flow, and sometimes I just sit in a pose that feels good for deep breathing and I’ll just focus on my breath for 5-30 minutes.
That’s all the active stuff I do to take care of my body as an adult with cystic fibrosis.
I also pay a lot of attention to my diet and take care to get enough of the right types of food.
As a vegan with CF, I have to really watch my calories, fats, and proteins especially! I usually get extra nutrients and such with smoothies- so I aim to eat 2-3 large meals per day, and I’ll usually have 2-3 snacks with massive smoothies full of nut butters and chia seeds.
Before deciding to live a vegan lifestyle, I always noticed meat and dairy upset my stomach and I limited quantities as much as I could even as a child. This isn’t right for everyone, but for me it’s been an amazing change.
To sneak in more calories, I really focus on nuts and seeds! I am obsessed with peanut butter and avocados, I cook just about everything in coconut or olive oil, and I pack my smoothies full of kale and spinach, peanut butter, and tons of bananas. It works really well for me. On occasion I’ll also add protein powder to up the calories and protein.
Then comes the mindset work!
I am a survivor of child abuse and trauma, so it’s hard to say exactly how much of my struggles with anxiety and depression in the past were due to my CF and how much was due to what I experienced as a child, but either way I’ve taken a lot of responsibility for the way that I think and feel on a daily basis. I set time aside for myself each day to do whatever I need to do- from allowing feelings in and processing them, to exploring new sides of myself and just giving myself time to not care or worry about certain things.
I think the inner work is really key to staying healthy, because if you’re in a space where you’re dreading waking up or you don’t love and care for yourself enough to do your treatments, take care of your body, and make sure your basic needs are being met, CF is going to eat you alive.
Laughter is a really important part of my days.
I joke all the time that my favorite airway clearance technique is watching funny cat videos, but I really think there’s some truth to it! When I was really little I would laugh until I cried literally every day, and it felt amazing for my lungs.
Laughing loosens me up, it helps me to relax and embrace myself where I am. It feels amazing to laugh, it sparks connections and bonding when I’m laughing with other people, and it gives me a sense of peace and love for the world around me.
Even if funny cat videos on Youtube aren’t for you, I seriously recommend finding something to laugh about every single day. A really good deep belly laugh that brings tears to your eyes. It’s a game-changer!
So that’s a little look inside what I do for myself and how I approach self-care as someone with cystic fibrosis. I hope you find this insight to my life and mindset helpful, and if you want to see more posts like this be sure to let me know!