Living with CF can be overwhelming, but try to remember- we are living! It can be a daunting task day in and day out with all the things that need to be done to treat CF, but I have found that having a written plan of action for all treatments, medication and exercise helps me fit it into my daily “normal” routine. Eventually it all becomes the norm for me and my routine becomes my lifeline...
The compliment I get most often is- “you don’t LOOK sick”. My response: “well thank you, I try”! And I try very hard too! Most of the time those of us with CF DON’T look sick. But like the old saying goes- it’s what’s on the inside that counts! I could be having one of the worst days in regards to breathing, feeling junky, and infection could be lurking just around the corner for me – but to those who see me moving through my daily routine, if you don’t work closely with me or live with me, they may never even suspect. It is not a ruse or a mask that we wear, we are not hiding anything, we are just trying to be “normal” in spite of what we are struggling with. You may not notice the extra precautions we take to stay out of other people’s breathing space when they show signs of a cold or the flu, or when we carry hand sanitizer in our back pockets in the winter. It may not look odd to you that I have a full sized shopping cart in the store even though I only have one item, because I need to lean on the cart so I can walk through the store that day. My coughing could be chalked up to allergies, asthma or swallowing my drink wrong...and at the end of the day when we are all getting ready for bed only my husband knows that I am hooking up to oxygen for the night because I feel like I need just a little help recovering from the day. All of these things are just little ways we continue to “not look sick” when we are out living our lives in public. But this is how we try to live as normal a life as possible! So please compliment me as much as you want – as long as that compliment is still “you don’t LOOK sick”!
As consistency is the key to success, I believe in a consistent routine in my healthcare regimen. I don’t mean that we have to do the same thing every day the same way everyday- that would be boring, but I do think that we need to incorporate the same effort behind what we know we need to do every day to have a successful day. A successful day can lead to a successful week and that can lead to a successful month! Many of my nebulizer treatments are the same each day, as are the pills, and even the therapies! But I like to change up my exercise routine and my food choices to make things fun! These are simple yet effective ways to keep the routine from getting too mundane. I also try to keep that written schedule I mentioned earlier, making sure that I am not skipping over anything or forgetting something important. Everyone’s days are busy enough, so I know that if I have it written down I am more accountable and the burden on me is less.
As the days get busier, and we are tempted to let a treatment slide here or there, I can speak from firsthand experience and say please don’t do this! Do what you can to make sure you fit it all in! With a routine it becomes much like brushing your teeth! It’s just something you do. Try making vest sessions fun with music or game shows or even with someone else to help with tasks you need to get done at the same time. I have been known to put on makeup while doing a nebulizer treatment to save time before work in the mornings! Make sure all your pills are out and ready ahead of time to take them- this minimizes forgetting any! I have four large pill boxes that are Sunday through Saturday so I can fill them for the entire month ahead. This also helps when it is time for refills on all my meds! Missing pills or treatments leads to missing more pills and treatments and this can cause major setbacks over time. It is a dangerous game to play, and one not easy to bounce back from. Take care of your lungs, and add up your calories- these are the tools we need to live balanced “normal” daily lives!
Incorporate exercise into your routine. This can stem from keeping a tally of how many times you climbed stairs in a day to taking a walk or riding a bike to a yoga class for deep breathing to a full blown work out or even a pickup game of your choice (I personally like volleyball or soccer!) No matter what the exercise is or the impact level, it is something which leads to more and more each day! As you continue you will notice a difference in your lungs, your attitude and your outlook on life!
Once in a while I still find myself hearing disappointing and sometimes depressing information from well-meaning but often misinformed people around me- that includes friends, family and yes even doctors. I try to remind myself of all the ways that this illness has transcended in the years I’ve been alive. From when I was born to now, I almost lose count of all the steps forward CF research has taken. Some of it I have been fortunate to benefit from and some of it not, however I still run into the negative mindset of the illness. I try to stay prepared and to put it into perspective, and when I am confused I seek trusted sources (my treatment center – whom I have had since day one, my mother – who has been step by step with me, whether moving forward or going backwards, and a few trusted online resources where others with CF can chat and voice meaningful conversation about everyday life with CF. i.e. www.cysticlife.com , www.cff.org etc.) I find it very helpful to connect with others who live with CF and their families. Although we travel these roads together, some of us can tell others what roads may lay ahead. Take advantage of this! It is helpful and it keeps us sane in the midst of our busy routines!
The compliment I get most often is- “you don’t LOOK sick”. My response: “well thank you, I try”! And I try very hard too! Most of the time those of us with CF DON’T look sick. But like the old saying goes- it’s what’s on the inside that counts! I could be having one of the worst days in regards to breathing, feeling junky, and infection could be lurking just around the corner for me – but to those who see me moving through my daily routine, if you don’t work closely with me or live with me, they may never even suspect. It is not a ruse or a mask that we wear, we are not hiding anything, we are just trying to be “normal” in spite of what we are struggling with. You may not notice the extra precautions we take to stay out of other people’s breathing space when they show signs of a cold or the flu, or when we carry hand sanitizer in our back pockets in the winter. It may not look odd to you that I have a full sized shopping cart in the store even though I only have one item, because I need to lean on the cart so I can walk through the store that day. My coughing could be chalked up to allergies, asthma or swallowing my drink wrong...and at the end of the day when we are all getting ready for bed only my husband knows that I am hooking up to oxygen for the night because I feel like I need just a little help recovering from the day. All of these things are just little ways we continue to “not look sick” when we are out living our lives in public. But this is how we try to live as normal a life as possible! So please compliment me as much as you want – as long as that compliment is still “you don’t LOOK sick”!
As consistency is the key to success, I believe in a consistent routine in my healthcare regimen. I don’t mean that we have to do the same thing every day the same way everyday- that would be boring, but I do think that we need to incorporate the same effort behind what we know we need to do every day to have a successful day. A successful day can lead to a successful week and that can lead to a successful month! Many of my nebulizer treatments are the same each day, as are the pills, and even the therapies! But I like to change up my exercise routine and my food choices to make things fun! These are simple yet effective ways to keep the routine from getting too mundane. I also try to keep that written schedule I mentioned earlier, making sure that I am not skipping over anything or forgetting something important. Everyone’s days are busy enough, so I know that if I have it written down I am more accountable and the burden on me is less.
As the days get busier, and we are tempted to let a treatment slide here or there, I can speak from firsthand experience and say please don’t do this! Do what you can to make sure you fit it all in! With a routine it becomes much like brushing your teeth! It’s just something you do. Try making vest sessions fun with music or game shows or even with someone else to help with tasks you need to get done at the same time. I have been known to put on makeup while doing a nebulizer treatment to save time before work in the mornings! Make sure all your pills are out and ready ahead of time to take them- this minimizes forgetting any! I have four large pill boxes that are Sunday through Saturday so I can fill them for the entire month ahead. This also helps when it is time for refills on all my meds! Missing pills or treatments leads to missing more pills and treatments and this can cause major setbacks over time. It is a dangerous game to play, and one not easy to bounce back from. Take care of your lungs, and add up your calories- these are the tools we need to live balanced “normal” daily lives!
Incorporate exercise into your routine. This can stem from keeping a tally of how many times you climbed stairs in a day to taking a walk or riding a bike to a yoga class for deep breathing to a full blown work out or even a pickup game of your choice (I personally like volleyball or soccer!) No matter what the exercise is or the impact level, it is something which leads to more and more each day! As you continue you will notice a difference in your lungs, your attitude and your outlook on life!
Once in a while I still find myself hearing disappointing and sometimes depressing information from well-meaning but often misinformed people around me- that includes friends, family and yes even doctors. I try to remind myself of all the ways that this illness has transcended in the years I’ve been alive. From when I was born to now, I almost lose count of all the steps forward CF research has taken. Some of it I have been fortunate to benefit from and some of it not, however I still run into the negative mindset of the illness. I try to stay prepared and to put it into perspective, and when I am confused I seek trusted sources (my treatment center – whom I have had since day one, my mother – who has been step by step with me, whether moving forward or going backwards, and a few trusted online resources where others with CF can chat and voice meaningful conversation about everyday life with CF. i.e. www.cysticlife.com , www.cff.org etc.) I find it very helpful to connect with others who live with CF and their families. Although we travel these roads together, some of us can tell others what roads may lay ahead. Take advantage of this! It is helpful and it keeps us sane in the midst of our busy routines!
