A Day In The Life Of Someone With Cystic Fibrosis
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Health and Wellness

A Day In The Life Of Someone With Cystic Fibrosis

The healthy version.

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A Day In The Life Of Someone With Cystic Fibrosis
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Cystic Fibrosis, A.K.A, "sixty-five roses" to the kids because that is much less of a mouthful. Cystic Fibrosis is a genetic disease that affects 30,000 people in the United States and 70,000 worldwide. I just happen to be one of those "oh-so-lucky" few. It mainly affects the respiratory system and digestive system, specifically, the lungs and pancreas.

But as someone with CF gets older, it can begin to affect other parts of the body. But I'm not here to spit off a bunch of facts that in the end would sound like a report for school. I'm going to attempt to put into words how it feels to have Cystic Fibrosis. Disclaimer: CF is different for literally everyone that has it. We're like snowflakes in the way that from afar, we (people who CF) all look the same, but once we're under the microscope, we are very, very different.

Waking up with Cystic Fibrosis; Waking up is the 2nd hardest part of the day when you have CF. (The first hardest part is going to sleep, but we'll get to that later.) When you wake up and you have CF, it takes a bit longer for your lungs to wake up. Imagine waking up with a tiny coffee straw in your mouth being the only way you can breathe. That's how it feels.

To get the lungs to wake up and start properly working, as best as lung diseased lungs can, you have to do physical therapy and breathing treatments. There are multiple different forms of physical therapy but that most common one is called "the vest." The vest is a vest (obviously) that you put on and plug two tubes into the side. You turn on a machine that is connected to the two tubes that then pushes air into the vest and begins to shake the vest and the person hooked up to it. This is meant to help clear the lungs.

Along with the vest comes the breathing treatments. Each patient has their own array of breathing treatments tailored specifically to them and just how sick they are but the typical order goes, albuterol, which is used to open up the airways, hypertonic saline, Pulmozyme, and an inhaled antibiotic used to treat whatever lung infection may be present.

I personally have to add an inhaler called Dulera to the end of this because as if CF wasn't enough stress on my lungs, I also have asthma. The process of doing all of this takes anywhere from 30 minutes-2 hours JUST for the morning routine. After doing all of this, it's time to take all of the morning medicines. Yeah, there's still more. I'm lucky in the way that I don't have too many pills to take in the morning, mainly just vitamins, other supplements, and one for acid reflux. The average CF patient takes anywhere from 10-30 pills a day, some even needing to take more.

Daytime with CF; My daytime with CF is when the other things that come with Cystic Fibrosis give me problems. CFRD is Cystic Fibrosis Related Diabetes. 50% of all people with CF develop CFRD by the time they are adults. To put it in simple terms, this happens because our pancreas suck and his lazy and just doesn't like to work properly either. Like clockwork, I was officially diagnosed with CFRD right after my 18th birthday. It wasn't causing many problems until recently.

This is how my pancreas works. When I eat something that has carbs or sugar in it, which is always, my pancreas just doesn't release insulin like it should and my blood sugar skyrockets, this rarely ever gives me any symptoms. The problem comes into play when my pancreas finally realizes that my blood sugar is too high and it starts going into overdrive, releasing too much insulin. This then causes my blood sugar to drop rapidly.

This is when the symptoms like lightheadedness, shaking of the hands, and nausea set in. I also get low every single time I exercise no matter how much I eat or don't beforehand. The other day when I got back from a walk, my blood sugar was 41, extremely low...like about to go unconscious low is in between 30-40. Daytime is also when I struggle most with my asthma, especially if I'm out-and-about. It gets a bit annoying having to constantly carry around that huge inhaler in a tiny purse made only for a wallet.

Nighttime is basically my worst enemy when it comes to dealing with CF. I love the nighttime with all my heart but this is when my body becomes exhausted and breaks down. The average CF person needs 12 hours of sleep a day to even feel relatively good throughout the day. If those 12 hours aren't met, which for me, they rarely are, you can really see the toll it takes when the sun goes down.

Breathing gets more difficult again and your body is just physically exhausted. The luck I have with breathing alright throughout the day goes away at this time. Even after doing all of my nighttime physical therapy and breathing treatments, my lungs still don't feel great. I find myself coughing if I try to do anything but take a shallow breath, then the shallow breathing obviously leads to worse breathing and then the coughing begins. It's a whirlwind.

You know how I described how it takes the lungs a while to wake up and how that felt? Well, it's kind of like they do the same thing at night. They fall asleep early and just make things so much more difficult. When you have CF, it's like you constantly have a cold, a stuffy nose, just in your lungs. That amount of not being able to feel like you can breathe through your nose when you have a cold? That's how it feels.

I'm not one to let Cystic Fibrosis hold me back in life. At least, I try not to be. But I always find myself making excuses as to why I can't stay out later, or why I can't sleepover somewhere. It's usually "I've got a lot of work to do." "I have to get up to do something really early and should get rest." "I really just don't feel all that well." which is technically true.

All of these reasonings sound much better than the actuality of it which is "If I don't get home to do my breathing treatments in the next 30 minutes, my lungs will just flat out give up." or "I really need to get home so I can be in a coughing fit louder than a lion roars and I really would rather not do that around everyone." "I have to get home because it's been a rough day and I can already tell I'm going to wake up in the middle of the night literally gasping for air and in desperate need of Albuterol."

This is how it is living with Cystic Fibrosis being "completely healthy." This isn't telling you all about the "1-3 times a year when a CF patient has to go into the hospital for lung infections" day. That is a whole other kind of day/week/month that I'll get into when the time comes. A friend asked me the other day just how life was with CF and if it was all that different to a normal life.

Well, the good thing is I've had CF my whole life so, to me, it is a normal life. That's the reasoning behind me writing this; the curiosity of others. I hope this can give a bit of insight to those of you that have always wondered just how life is with CF. I'm just now realizing just how long this article is and I very much appreciate it if you stuck around and read it all.


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This article has not been reviewed by Odyssey HQ and solely reflects the ideas and opinions of the creator.
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