Chronic illness can teach so many invaluable lessons along the way. CF has taught me to value every single day and to really enjoy every good day. Knowing at any moment CF can make my day miserable (low energy, GI issues, shortness of breath, respiratory infections, the list goes on) makes me so appreciative of every day I wake up and feel good! It has taught me to appreciate those around me as well because we never know how much time we have with one another, not only because of CF, but because those of us with chronic illness realize how fragile life is and no one is ever promised another moment.
However, in order to survive with a chronic illness and still function in a chronically well world I have found that I have adopted some less than healthy lessons along the way. I have learned over the years how to play pretend in a way that I can almost fool myself. Through the years I have perfected how to pretend everything is okay, put a smile on my face and act as if everything is fine even when I am so very far from okay. Living a life when my health often demands my attention and tries to take center stage on a regular basis has caused me to pretend to the outside world that those problems and sickness and hurt just don't exist. This has allowed me to get out and still live a fulfilled life despite CF trying to get in the way. And yet, when we pretend everything is okay (enough) everyday of our lives it can get tricky to know when to stop pretending and put ourselves, and even CF, first.
I, personally, could give a million examples of when I waited too long to raise the white flag and ask for help. Whether pushing through made me wait too long to call the doctor, not change antibiotics as soon as I should, commit to things I shouldn't, or show up when I should have stayed home it became a pattern I didn't know how to stop. Pretending I was fine and pushing through became such a way of life I got to the point that I just stopped being authentic in what I could handle.
See the problem is that by doing everything even when I feel bad I felt I was proving CF wrong and not letting it dictate my life. You hear it all the time in the CF community. "CF is part of me, but it doesn't control me" type "inspiring" quotes get ingrained into your mind. It is an attitude that is common among many of us with CF (and chronic illness in general). Push through, preserver, and live the life you want despite your health issues. At times this can be a good philosophy, but it can also discredit how much CF does play a role in our lives. If we are super honest with ourselves and with one another CF DOES get in the way. And you know what? It is okay to admit that it does at times.
In an attempt to not let CF win I would try to do too much just to spite Cystic Fibrosis. Yeah, I have an infection that is causing me too feel as if I am full to the brim with toxic waste and my fevers are causing every muscle in my body to ache, but if I pop enough ibuprofen I can show up and help out because otherwise CF stole this opportunity from me. Sure, I feel like death, but I don't want CF to ruin this time with my daughter/husband/friend so I will drag my tired and broken body to that birthday party/outing/dinner/event and pretend I am having fun.
And in the end I am realizing that by trying to prove to CF that I can pretend it doesn't exist and live a "normal" life I am actually letting Cystic Fibrosis have the upper hand. At times I am making choices to prove CF wrong rather than because I genuinely want to make that choice. When I feel bad, I would rather curl up in bed with a book or take a nap, but because CF is making me feel bad I often force myself out of the house anyway. So, in reality I am going out because of CF rather than staying in for me.
As my life gets more hectic I am trying to learn to balance what I can handle and what I genuinely want to do for me and my family and not just to prove to myself that CF doesn't have the upper hand. After 20 years of pretending I am realizing old habit are hard to break, but as I approach my mid-30s I realize I don't need to hang on to some of the old unhealthy habits of my youth and what better time to change for the better than today?
Showing posts with label Coping. Show all posts
Showing posts with label Coping. Show all posts
Friday, November 10, 2017
Monday, February 15, 2016
Drought
I remember tucking Kaylee, when she was still a chubby baby, into her stroller on a particularly rainy day several years ago. We wanted to take advantage of the sun between the cycles of rainfall to get a quick walk and a break from the four walls that made up my living room. She was mesmerized by the world around her glistening from being bathed in raindrops, making the mundane and familiar walk seem mysterious and wondrous.
That very same earth soaked walk I took with Kaylee so many years ago was one of the last walks I would take before my health plummeted and my world was forever changed. I had achieved my biggest dream and felt as if life in that rain soaked afternoon had been almost too good to me and gave me more than I deserved. I had no idea how quickly things could change.
The following year, the smell of the earth freshly cleansed by raindrops seemed to be a distant memory, just as that toothless, chubby cheeked baby smile seemed as if it were a muddled long ago dream. We were in the midst of a drought and the sun bathed winter days seemed odd and out of place. As the months and then the year passed there was murmurs of worry. These murmurs turned into loud voices, limiting household water usage. Those voices turned stern as people were told to let their lawns turn brown, throwing around slogans that "gold" was the new green. And soon those voices were thunderous and forests and towns all around the state were going up in flames, destroying all living things in its wake. And we waited and hoped. We helplessly waited for the clouds to roll in and the sky to turn dark and wash away the drought that plagued us for years.
My health tumbled quickly after contracting the flu, and although I was worried I knew that the next set of IVs, the next round of oral, the next month would bring better health. My murmurs of fear that my illness was intent on killing me turned louder as months passed and my health had not returned. My fear became louder as yet another round of IVs made no difference in my health, which was something that seemed foreign to me prior to contracting the flu. As the years passed and my health plummeted lower and lower despite IVs and hospitals and steroids my fear became so fierce it often clouded my mind. I wrote a letter to my family on the wishes I had for my daughter as she grew older, most likely without me. My belief in a future with my family grew dim.
And then there was a glimmer of hope. The news kept announcing that El Nino was coming, which has something to do with abnormal ocean temperatures which meant the only thing we so desperately needed, rain! There were days we went outside and were reminded of the familiar smell of the sky on the cusp of rainfall. There were swollen dark clouds that rolled in heavy with raindrops waiting to tumble to our dry and cracked land. And soon the lakes and rivers started to fill, the land turned green and lush like it was always meant to be.
Around this same time there was a glimmer of hope for me as well. I made it two months without getting sick. Two months turned into three. My port went unused and I didn't see the hospital walls 8 whole months. I started to lose the paranoia of germs and sickness and death that so often haunted the deepest darkest corners of my mind. I started to think that maybe I would live long enough for my daughter to have memories of my existence outside of pictures and stories told by family members.
We are still in need of rain to fill our reservoirs and snow pack in the mountains. We are still restricted on our water usage and we know that we are teetering between being okay and not having nearly enough water to sustain our land and our people's need for water. And yet, we got a small reprieve from the four rainless years and the fear of running out of water has quieted even if just a little.
My health will never be the same as it was so many years ago. So much of my lungs are now damaged and scarred, damage that will never be healed. I still find myself gasping after carrying a heavy basket of laundry or bending over too long. I get short of breath from gardening and seemingly simple tasks which can be frustrating and saddening at the same time. And yet, I am so far from the place I used to be. I no longer wonder when I go to bed at night if I will be able to crawl out of bed in the morning. I no longer fear the grocery store because pushing a cart is something I am once again confident I can do. I no longer need a nap after even the most mundane outing. I have a life again. I know I am always one bad bug away from not being okay, but for now, I am thankful for my small reprieve from the all consuming sickness that plagued me for so many years.
That very same earth soaked walk I took with Kaylee so many years ago was one of the last walks I would take before my health plummeted and my world was forever changed. I had achieved my biggest dream and felt as if life in that rain soaked afternoon had been almost too good to me and gave me more than I deserved. I had no idea how quickly things could change.
The following year, the smell of the earth freshly cleansed by raindrops seemed to be a distant memory, just as that toothless, chubby cheeked baby smile seemed as if it were a muddled long ago dream. We were in the midst of a drought and the sun bathed winter days seemed odd and out of place. As the months and then the year passed there was murmurs of worry. These murmurs turned into loud voices, limiting household water usage. Those voices turned stern as people were told to let their lawns turn brown, throwing around slogans that "gold" was the new green. And soon those voices were thunderous and forests and towns all around the state were going up in flames, destroying all living things in its wake. And we waited and hoped. We helplessly waited for the clouds to roll in and the sky to turn dark and wash away the drought that plagued us for years.
My health tumbled quickly after contracting the flu, and although I was worried I knew that the next set of IVs, the next round of oral, the next month would bring better health. My murmurs of fear that my illness was intent on killing me turned louder as months passed and my health had not returned. My fear became louder as yet another round of IVs made no difference in my health, which was something that seemed foreign to me prior to contracting the flu. As the years passed and my health plummeted lower and lower despite IVs and hospitals and steroids my fear became so fierce it often clouded my mind. I wrote a letter to my family on the wishes I had for my daughter as she grew older, most likely without me. My belief in a future with my family grew dim.
And then there was a glimmer of hope. The news kept announcing that El Nino was coming, which has something to do with abnormal ocean temperatures which meant the only thing we so desperately needed, rain! There were days we went outside and were reminded of the familiar smell of the sky on the cusp of rainfall. There were swollen dark clouds that rolled in heavy with raindrops waiting to tumble to our dry and cracked land. And soon the lakes and rivers started to fill, the land turned green and lush like it was always meant to be.
Around this same time there was a glimmer of hope for me as well. I made it two months without getting sick. Two months turned into three. My port went unused and I didn't see the hospital walls 8 whole months. I started to lose the paranoia of germs and sickness and death that so often haunted the deepest darkest corners of my mind. I started to think that maybe I would live long enough for my daughter to have memories of my existence outside of pictures and stories told by family members.
We are still in need of rain to fill our reservoirs and snow pack in the mountains. We are still restricted on our water usage and we know that we are teetering between being okay and not having nearly enough water to sustain our land and our people's need for water. And yet, we got a small reprieve from the four rainless years and the fear of running out of water has quieted even if just a little.
My health will never be the same as it was so many years ago. So much of my lungs are now damaged and scarred, damage that will never be healed. I still find myself gasping after carrying a heavy basket of laundry or bending over too long. I get short of breath from gardening and seemingly simple tasks which can be frustrating and saddening at the same time. And yet, I am so far from the place I used to be. I no longer wonder when I go to bed at night if I will be able to crawl out of bed in the morning. I no longer fear the grocery store because pushing a cart is something I am once again confident I can do. I no longer need a nap after even the most mundane outing. I have a life again. I know I am always one bad bug away from not being okay, but for now, I am thankful for my small reprieve from the all consuming sickness that plagued me for so many years.
Saturday, July 30, 2011
CF Control, progression, and guilt
I have read this challenge on several blogs and decided to take the challenge myself. I had to go through several blogs to find the original poster bc I felt they deserved the credit. Anyways, http://amatteroflifeandbreath.blogspot.com was the cyster that posted the challenge.
1. Write a blog explaining your personal thoughts and experiences in dealing with CF control and progression. This could include your views on whether CF is in fact a "controllable" disease, your personal definition of compliance, your thoughts on whether (or how) someone with CF should be judged in terms of "good enough" self-care (what makes you feel judged? do you think those fears are justified? is judgment ever useful in this context?), your own struggles with control vs. unpredictability, and how you keep motivated in the face of so many questions. Or, you know, whatever you want to write about really. It's your blog.
2. Comment below with a link to your blog so that all of us can read your response. YOU DO NOT NEED TO LINK TO MY BLOG IN YOUR ANSWER. If you'd like to do so, please feel free, but this is about starting a discussion, not publicity.
3. Encourage your own readers to get in on the conversation by posting the same instructions on your blog. Remember, the more responses, the better the conversation. Let's see if we can get this one going as much as with past challenges.
4. If you don't have a personal blog (or just don't feel like going through steps 1-3), feel free to still make yourself heard by simply leaving a comment with your thoughts below.
5. Non-CFers are 100% welcome to participate, either by pulling from their own experiences or simply by offering their perspective as people, friends, and loved ones.
The problem with a progressive disease is that as we decline we have no idea if it was due to something we did or did not do OR if it is the natural way our lungs are declining. We are given tools and meds in order to increase our chances of keeping infections at bay and our lung functions as high as possible, but these tools do not guarantee success. In fact, even with all of these tools we will all most likely die of this disease. The gray area creates problems. Because no doc can say your decline was absolutely because you missed that dose of pulmozyme one too many times, or the decline was 100% unavoidable it leaves the patient to always wonder. What else could I have done? Could I have gone to the hospital sooner? Could I have worked out more? The list goes on and on. I wanted to explain my story of guilt and feeling like I wasn't a "good" enough CFer and what I feel about compliant and decline today.
I had an unusually late diagnosis at the age of 14. This created a few obvious problems considering I was a middle schooler and a teen. I was told by my doctors to take a few inhaled meds (puffers) and to use my flutter once a day. I look back and think how EASY I had it then, but in my illogical 14 year old brain I used to think, "I have lived 14 years without ANYTHING it is not a big deal if I skip my flutter." I HATED that thing and I HATED looking at my mucus. When I started my flutter I used to do it in the bathroom with the lights off so I wouldn't have to look at the disgusting slime coming out of my lungs.
As time went on I was instructed to do more to take care of my health, but I was so determined not to let it interfere with my life that my health took a back seat to having fun. I wanted to live in the dorms in college which meant late nights and MANY missed treatments. I wanted to be seen as normal so I hid my disease from roommates and boyfriends resulting in more missed treatments. I decided to go abroad for a summer and volunteer, but couldn't bring my vest. My health during this time slowly declined.
I am now 27 with lung function much lower than it used to be. Was this because of my spotty compliance? Was it natural progression? I don't know, but I cannot help feeling that I had a lot to do with where I am today, both good and bad.
I carried a lot of disappointment and hate towards my 14 year old self for feeling that this disease was not serious and therefore I did not need to be compliant. I carried a lot of shame and disgust for hiding my CF from others. I was putting what others thought of me OVER a long happy life? Really!? REALLY?! This guilt weighed heavily on me for a long time!
BUT I have to say that I have been able to let the feeling of guilt (mostly) go. I was a child and I made childish mistakes. As a teacher, I try to picture myself as one of my students and it puts it in perspective. I was LEARNING how to care for myself and this disease. I made mistakes and I made some good choices too. I think it is important to do your best and don't stress over the little mistakes, we are not perfect and we were never expected to be perfect.
Today I am super compliant. I have made my health my one priority, but I am not perfect. With my imperfections I find the guilt still sneaks in. If I decided not to go to the gym in order to go to coffee with a friend I feel twinges of guilt. If I forget a dose of Cayston I feel guilt creeping into my thoughts. I have to constantly remind myself that I am doing my best while still have a life I enjoy! I also have to remember that we are not in control of this disease. We cannot stop decline or new bacteria from finding its way in our lungs, BUT we can do our best to help our bodies fight this never ending battle. I like to think it is a 20/80. 20% is controllable (although this may be generous) and 80% is nature/genes/whatever. I work as hard as I can to help out my 20%, but I also know when I get an infection that I can't shake or if my numbers drop it is not my fault. At that moment we can reassess our 20%. What else can I do to make myself healthier or feel better? But knowing that I am not the one in charge of when my lung function drops and infections arise sure makes breathing a little bit easier.
1. Write a blog explaining your personal thoughts and experiences in dealing with CF control and progression. This could include your views on whether CF is in fact a "controllable" disease, your personal definition of compliance, your thoughts on whether (or how) someone with CF should be judged in terms of "good enough" self-care (what makes you feel judged? do you think those fears are justified? is judgment ever useful in this context?), your own struggles with control vs. unpredictability, and how you keep motivated in the face of so many questions. Or, you know, whatever you want to write about really. It's your blog.
2. Comment below with a link to your blog so that all of us can read your response. YOU DO NOT NEED TO LINK TO MY BLOG IN YOUR ANSWER. If you'd like to do so, please feel free, but this is about starting a discussion, not publicity.
3. Encourage your own readers to get in on the conversation by posting the same instructions on your blog. Remember, the more responses, the better the conversation. Let's see if we can get this one going as much as with past challenges.
4. If you don't have a personal blog (or just don't feel like going through steps 1-3), feel free to still make yourself heard by simply leaving a comment with your thoughts below.
5. Non-CFers are 100% welcome to participate, either by pulling from their own experiences or simply by offering their perspective as people, friends, and loved ones.
The problem with a progressive disease is that as we decline we have no idea if it was due to something we did or did not do OR if it is the natural way our lungs are declining. We are given tools and meds in order to increase our chances of keeping infections at bay and our lung functions as high as possible, but these tools do not guarantee success. In fact, even with all of these tools we will all most likely die of this disease. The gray area creates problems. Because no doc can say your decline was absolutely because you missed that dose of pulmozyme one too many times, or the decline was 100% unavoidable it leaves the patient to always wonder. What else could I have done? Could I have gone to the hospital sooner? Could I have worked out more? The list goes on and on. I wanted to explain my story of guilt and feeling like I wasn't a "good" enough CFer and what I feel about compliant and decline today.
I had an unusually late diagnosis at the age of 14. This created a few obvious problems considering I was a middle schooler and a teen. I was told by my doctors to take a few inhaled meds (puffers) and to use my flutter once a day. I look back and think how EASY I had it then, but in my illogical 14 year old brain I used to think, "I have lived 14 years without ANYTHING it is not a big deal if I skip my flutter." I HATED that thing and I HATED looking at my mucus. When I started my flutter I used to do it in the bathroom with the lights off so I wouldn't have to look at the disgusting slime coming out of my lungs.
As time went on I was instructed to do more to take care of my health, but I was so determined not to let it interfere with my life that my health took a back seat to having fun. I wanted to live in the dorms in college which meant late nights and MANY missed treatments. I wanted to be seen as normal so I hid my disease from roommates and boyfriends resulting in more missed treatments. I decided to go abroad for a summer and volunteer, but couldn't bring my vest. My health during this time slowly declined.
I am now 27 with lung function much lower than it used to be. Was this because of my spotty compliance? Was it natural progression? I don't know, but I cannot help feeling that I had a lot to do with where I am today, both good and bad.
I carried a lot of disappointment and hate towards my 14 year old self for feeling that this disease was not serious and therefore I did not need to be compliant. I carried a lot of shame and disgust for hiding my CF from others. I was putting what others thought of me OVER a long happy life? Really!? REALLY?! This guilt weighed heavily on me for a long time!
BUT I have to say that I have been able to let the feeling of guilt (mostly) go. I was a child and I made childish mistakes. As a teacher, I try to picture myself as one of my students and it puts it in perspective. I was LEARNING how to care for myself and this disease. I made mistakes and I made some good choices too. I think it is important to do your best and don't stress over the little mistakes, we are not perfect and we were never expected to be perfect.
Today I am super compliant. I have made my health my one priority, but I am not perfect. With my imperfections I find the guilt still sneaks in. If I decided not to go to the gym in order to go to coffee with a friend I feel twinges of guilt. If I forget a dose of Cayston I feel guilt creeping into my thoughts. I have to constantly remind myself that I am doing my best while still have a life I enjoy! I also have to remember that we are not in control of this disease. We cannot stop decline or new bacteria from finding its way in our lungs, BUT we can do our best to help our bodies fight this never ending battle. I like to think it is a 20/80. 20% is controllable (although this may be generous) and 80% is nature/genes/whatever. I work as hard as I can to help out my 20%, but I also know when I get an infection that I can't shake or if my numbers drop it is not my fault. At that moment we can reassess our 20%. What else can I do to make myself healthier or feel better? But knowing that I am not the one in charge of when my lung function drops and infections arise sure makes breathing a little bit easier.
Wednesday, May 18, 2011
A Healthy Spirit
Another yoga post...I am not obsessed I promise...
In yoga today we had to make an intention for ourselves today for one of the sets. For non-yoga people this is almost like a prayer. Of course, my intention came to mind instantly. The yogi was explaining how to put forth your intention and he used the example of good health. I thought it was funny because that intention never once crossed my mind. Of all people you would think I would want good health, but by not even thinking of my health I came to a realization.
After 13 years of knowing about my CF and a lifetime of coughing and health problems I have honestly accepted my shell. I call it that because the true me (spirit, soul, essence whatever you call it) is perfectly healthy and whole. I have realized that I will never be "healthy" as far as societies standard of health, but the true me (spirit) can be very healthy. By finding happiness in everyday I am given, being truly thankful and grateful for all I have in my life, by fulfilling my passions, and being a giving and loving person to others I can be perfectly healthy because I will have a healthy spirit and in the end that is all we have. I learned at a very young age that we can never control or choose the shell we were given, but we can choose the energy we give off in this life which in turn changes our very spirit. Although my body will continuously deteriorate my spirit can forever gain strength and beauty.
In yoga today we had to make an intention for ourselves today for one of the sets. For non-yoga people this is almost like a prayer. Of course, my intention came to mind instantly. The yogi was explaining how to put forth your intention and he used the example of good health. I thought it was funny because that intention never once crossed my mind. Of all people you would think I would want good health, but by not even thinking of my health I came to a realization.
After 13 years of knowing about my CF and a lifetime of coughing and health problems I have honestly accepted my shell. I call it that because the true me (spirit, soul, essence whatever you call it) is perfectly healthy and whole. I have realized that I will never be "healthy" as far as societies standard of health, but the true me (spirit) can be very healthy. By finding happiness in everyday I am given, being truly thankful and grateful for all I have in my life, by fulfilling my passions, and being a giving and loving person to others I can be perfectly healthy because I will have a healthy spirit and in the end that is all we have. I learned at a very young age that we can never control or choose the shell we were given, but we can choose the energy we give off in this life which in turn changes our very spirit. Although my body will continuously deteriorate my spirit can forever gain strength and beauty.
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