WARNING: This is probably the LONGEST blog Ive written thus far. Please bare with me as it does include tips for keeping a balance in life.
The average "healthy" teenager growing up in the US have many things on thier minds. From cleaning their room, doing their chores, going to school and striving for good grades. Maintaining a social life while hoping to "fit in". Deciding to join after school clubs or sports, having a part time job after school, and spending time with both family and friends. Experiencing young love, the pressures of unsafe sex, drugs, and alcohol. Who to go to homecoming and the prom with and finding the perfect dress. Stressing over the SAT's and ACT's, which college to pick, and figuring out what career path to be on.
☆The list honestly goes on and on, as you slowly transition from adolescents, tweens, and teenagers into young adults.
Learning the meaning of responsibility as a young teenager is crucial in order to grow up and be successful in today's society.
Then comes the tricky part!! Let's throw in curve ball to the typical teenage life, as if they don't have enough going on, by having a terminal or chronic illness on top of everything else. Being a teen diagnosed with Cystic Fibrosis or even MS, Juvenile Diabetes, Lupus, Childhood Cancer and Sever Depression just to name a few can be detrimental. And, BOOM! The stress multiplies.
☆BALANCE is key. How you live your life as a "normal" teen while balancing your medical life at the same time can be overwhelming. This is something I struggled with my whole adolescent life.
☆When I say "normal" It's only because I am willing to bet that all people with any disease has thought or said, "I just want to be normal!" at least once.
♡I know I have thought it, whispered it, screamed it, and cried about it many times over the years! I have come to realize though, normal is over rated. Strive to be DIFFERENT!
First and foremost, NEVER be ashamed of your disease, because if you are, it will make things a lot more difficult. Always be willing to speak about it even if it's a small tidbit here and there. If you don't talk about it at some point your friends will have no idea what's going on or how to help you if need be. Be as open as you can be without going too far that it bothers you. Only you can judge what you are comfortable sharing. The more you talk about it, the more comfortable you are talking and educating people about your disease. Which is what the CF community needs most!
☆This was my go to when someone would ask questions about CF when I was a teen, "It's a lung and digestive disorder". Back then I refused to say the word, "disease." It did open the dialog after a while helping me be more accepting of CF.
This statement is a perfect example of balance, but I always see negative comments when someone posts or says it. "I have Cystic Fibrosis, Cystic Fibrosis doesn't have me." People are trying to discredit that statement by saying,
"If you say that you have CF, CF doesn't have you, then you are letting CF control you."
This is NOT true! Yes, you are admitting you have CF and rightfully so. You do!! Kudos for being strong enough to put it out there in the first place. Be proud of who you are. Be proud of the hell you've gone through. The second part of that statement, means you are saying that you are strong enough to balance a life with CF without making CF the main focus of your life. Stand by that statement no matter what anyone says, because it is 100% true if you truly live with balance!
☆NEVER let the opinion of another person make you feel like you are doing something wrong by sharing your strength against CF. Especially some of the CFers on the Internet. They can be brutal.
In reality they may actually need your help to guide them in the direction of opening up about the disease themselves. You never know what they are going through. Try not to retaliate to Internet bullys, it is just pointless to try.
☆This is based only on MY personal life and how I have and do work to balance everything the best I can. I can't vouch for ANYONE else or their schedules/work day/or anything else.☆
Finally we are down to the helpful part of my long rambling.
•When you wake up, sit on the side of your bed, clear everything from your mind, all of the negativity, pain, issues, school, tests, BF's or FG's and just normal teen life drama. Take three very slow and very deep, well as deep as you can, breaths in and out. While you make yourself have the first of many coughing fits during the day. Yes, this exercise will help you medically as well. I tricked you!
☆Combined relaxation, exercise, and CF
•Put on your oxygen if you need it, shoes, and then take the dog for a walk. No dog? Just take a short little walk outside. Breathing in the nice crisp morning air before doing a treatment helps by opening your airway to get a better treatment.
☆Combined animal bonding/nature with CF
•Afterwards it's chest PT and nebulizer time. I know you can't wait for this part of your day.
☆Just one out of the 3-4 daily treatments last roughly 30 minutes to an hour.
While doing treatments try studying extra for each class while your vest is on. Do flash cards and have your parents ask you questions and answer them. You can NEVER study enough and this way you are doing two things you don't really want to do at the same time. That's a plus right? If your like me and do manual chest PT make your sides a drum and sing along to the beat with whoever is beating on your back. Of course you can always grab that phone and play on it for the duration.
Plan your week and figure out what time practices or games are, who has what sleep over planned, or what events are going on during the week. Those type of things can help the time go by faster and can be the balance of your personal life and your sick life.
☆Combined social, school, and organization of life with CF
•Text your friends while finishing your treatments and find out what they are wearing and all of that. If it's a special day at shool or if you need to wear a certain thing for something. Then get ready for your day however you would normally do. ☆Remember ladies a little makeup goes a long way and accessories make the outfit
☆Now, while you're at school balancing CF and your normal life shouldn't be too difficult.
Try to form a relationship with your school nurse and guidance counselor, so you know if something happens you can go to them. My nurse had all the medications I would possibly need in her office. That is something to stay on top of and makes each day at shool a lot easier. Everything else was basically normal. Go to class, be with your friends, make memories. PAY ATTENTION and take as many notes as you can. Try to learn something! Pace yourself when walking and always sanitize/wash your hands often.
•After school activities or practices can be difficult with staying healthy and energized. Remember to always bring snacks and a bottle of frozen water in your bag. When it's time for you to need a drink of water it will still be cold. Bring your albuterol inhaler with you. Use it before and after any active activities you may be doing. You can't bring your vest to school, well you can, but let's think reasonably. Any REAL physical activity will actually stand in and act as your vest/chest PT for that time anyway.
☆Combined after school activities with CF
•When you get home from school take your evening medication and start a nebulizer treatment. While that treatment is going start some homework. See all the fun stuff you never want to do can be done together. It makes it so much easier and faster to put it behind you and have more of a night ahead of you. Chat with your friends and see what your plans may be. Try and eat dinner as much as possible at home with your family. Family time is very important for the balance you want to achieve. Needing support is so crucial for a CF teen. If you're allowed to go out with friends then go make some memories and have fun. Just always take medication and inhalers with you. Simple as that.
☆Combined your home life, family time, school, and friends with CF
•Last step of the day at least in my chronicles of the CF life. Of course there is so much more. Before going to bed try that walk once more. Breathe in the fresh air and out the bad air. Moving all the mucus up and out! Then start your last vest treatment, nebs, and medication. Still do the same things I mentioned before during all of your CF regimen. Include your friends or family making it less irritating and isolated. Study, read, plan, and so on. Then get ready for bed however you like.
☆In the end you need to not be mad at the disease. We all hate it and can't get away from it, but no good will come from it if you don't fight back. Sadly, CF wins when we mistreat ourselves by not doing treatments, taking medications, and not being able to talk openly about the disease.
Once you get into your personal grove and the right amount of balance between life and your disease things will be easier for you to focus on the important things in a teens life. Like who's winning the homecoming game, which dress to where for prom, and what concert to go to over spring break!
I was there once,
Sandi
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