This week my husband and I had a little get away. We went about an hour and a half Northeast to a historic old town to spend some time in nature just the two of us- child free! I was excited to get a little alone time with my husband before school starts and we thought of it as an early anniversary vacation (we have our 7 year wedding anniversary early next month). My only little concern was that we would 2,500 feet higher in elevation than we currently live (which is essentially sea level) and I was a little concerned with how my lung would handle the elevation. We figured we would give it a shot and if it was a little too high our hiking and nature weekend would end up being a laying around and relaxing weekend.
As my GPS notified us that our hotel was quickly approaching I realized that the car was going up a steep hill. As the car drove higher and higher I started to get worried. We live in a valley so our landscape is as flat as a landscape can be and I just wasn't sure if the hills in this town would make walking a challenge. We heard the town we were visiting wasn't known for good parking and that our best bet was to walk into town for restaurants. Would my lungs be able to handle these steep hills at a higher elevation? I figured there was nothing we could do about it at this point so we hoped for the best.
When we checked into our hotel we realized our room was on the second floor up a very steep and curvy set of stairs. Stairs still give me a touch of anxiety because for a long time I just physically could not climb a flight of stairs. When I was sick for a couple years I would have to climb stairs on all fours because I did not have the lung power to walk them like a normal person. Needless to say stairs bring back bad memories. Again, I was wondering how I was going to make it through this vacation.
All of these secret little fears ended up being fruitless. I handled the hills and the stairs like a champ! Sure, I may have been a little more winded than the normal person, but I also only have 1/3 of the lung function that a normal person has. The entire trip I did not need to stop and rest on the hills or the stairs and we walked a ton of hills! And even more amazing I survived a hike that was a straight downward hill that I would old never have even attempted a few years ago in fear that I would never make it back up the hill. Sure we walked back up the hill very slowly. But my husband was so patient and wouldn't let me get frustrated with how often I needed to rest. He even carried me on his back for a little to give me a rest (although I really didn't need the help it was a nice little rest).
As we were driving back home I couldn't help, but be in awe with my body. I was able to do so much and my CF hardly got in the way of our vacation (those darn treatments are always such a pain on vacation because we can't just get up and go) and I could hardly believe I was the same person I was a few years ago. It also made me realize once again lung function is just a number. I have been hovering in the low 30s for a few years now, but what I am able to do now vs a few years ago is extremely different! I have a feeling consistently swimming has helped condition my lungs and body so that I am able to much more with my little 33(ish)% now than I was even a year ago!
I know this newfound amazement may vanish with the next cold or exacerbation, but for now I am reveling in a body that has dealt with so very much and still seems to power through!
Showing posts with label CFer's Spouse. Show all posts
Showing posts with label CFer's Spouse. Show all posts
Friday, August 18, 2017
Wednesday, May 17, 2017
CF Awareness Month Blog - Savior
Most of my entire life I kept CF a huge secret from everyone I knew. I kept it such a huge secret that I didn't even tell a few roommates. How crazy is that? I would do my treatments when they were in class or before they woke up. I seriously look back and can't figure out how I managed to pull that off! When I did have to tell roommates or coworkers, usually because I needed a PICC, I gave as few details as possible. CF was always my dirty little secret.
When I met my now husband I wanted him to know what he was getting into so I was extremely open about my CF. He was really the first person I let know all of me and my disease. As we grew closer he became the first person that took some of the burden I had from CF and helped me carry that burden. He not only was supportive in my health, was willing to do jobs very few people would (like clean my PICC site daily when I had such a nasty reaction I had hard even looking at it), he was also a huge emotional support.
The emotional and physical toll CF has on a person, especially as they decline, can be enormous and without the support of my husband I am not sure how I would get through. I am so grateful for his love and support!
Friday, March 24, 2017
Just 20 More
"Don't go anywhere because I love you too much..."
My husband whispered into my ear as he was climbing into bed. I had been asleep for a few hours at this point and was woken by his words just enough to process, mumble a quick response, "where would I go because I love you too?" and start to drift back to sleep. However, just before I slipped back into slumber a feeling of dread and sadness filled my heart. Before I could figure out why those words made my heart break, my thoughts were lost to sleep.
A few days later my husband and I found ourselves sitting on the front stoop with glasses of wine. The night air carried the perfect feeling of spring, the neighborhood was quiet with slumber, and we were discussing the events of the day gone by. There was a quiet lull in conversation and I tipped my head back to see thousands of stars dancing above us. Even after all these years the stars seem to surprise me with their glaring presence in the city. Just as I was about to comment on the beauty of the night sky my husband uttered those same words he did the other night,
"Please don't go anywhere. I love you so much."
My heart filled with that same sinking dread it had the other night as I responded. "where would I go? My life is here with you and Kaylee." But even as I was said the words I knew what he meant. I knew it all too well.
"But you are going to die and I don't want you to leave me."
And there is was, the reason for my dread and his desire to ask me to stay despite knowing that it was a promise I was sure to break.
"I am doing everything in my power to stay here as long as possible"
"Just give me 20 more years."
And the thought of twenty more years stretched ahead of me felt overwhelming and impossible. Look how much my lungs have been destroyed by this disease in the past 30 years, how would I ever survive another 20? 52 years old, still so young to the average person, and yet I couldn't imagine how this broken body could make it to such an age. But when you love someone so much that hurting them hurts you even more, you sometimes are willing to tell small lies.
"I think I can do twenty." The problem when you love someone so much and that love is reciprocated they know when you lie. He knew. I turned to him, thinking of my mother in her in 50s and how youthful she still was,
"You will only be 50, still so young."
"But I won't age well," he said with a smirk, "so everyone will think I am 70, at least!" It is a running joke we have, that we will age so very horribly. And I guess when I put it in writing it isn't funny at all and yet it always leaves us with tears in our eyes from laughter.
And somehow all that sadness that enveloped us under that night sky seemed to be washed away in laughter and talking about how horribly wrinkly and old my poor husband will be at the age of 50. Through all our years together sadness and fear often weaves itself into the lives were are creating together and yet it has made our bond stronger knowing our days may be limited and that the future is always uncertain.
My husband whispered into my ear as he was climbing into bed. I had been asleep for a few hours at this point and was woken by his words just enough to process, mumble a quick response, "where would I go because I love you too?" and start to drift back to sleep. However, just before I slipped back into slumber a feeling of dread and sadness filled my heart. Before I could figure out why those words made my heart break, my thoughts were lost to sleep.
A few days later my husband and I found ourselves sitting on the front stoop with glasses of wine. The night air carried the perfect feeling of spring, the neighborhood was quiet with slumber, and we were discussing the events of the day gone by. There was a quiet lull in conversation and I tipped my head back to see thousands of stars dancing above us. Even after all these years the stars seem to surprise me with their glaring presence in the city. Just as I was about to comment on the beauty of the night sky my husband uttered those same words he did the other night,
"Please don't go anywhere. I love you so much."
My heart filled with that same sinking dread it had the other night as I responded. "where would I go? My life is here with you and Kaylee." But even as I was said the words I knew what he meant. I knew it all too well.
"But you are going to die and I don't want you to leave me."
And there is was, the reason for my dread and his desire to ask me to stay despite knowing that it was a promise I was sure to break.
"I am doing everything in my power to stay here as long as possible"
"Just give me 20 more years."
And the thought of twenty more years stretched ahead of me felt overwhelming and impossible. Look how much my lungs have been destroyed by this disease in the past 30 years, how would I ever survive another 20? 52 years old, still so young to the average person, and yet I couldn't imagine how this broken body could make it to such an age. But when you love someone so much that hurting them hurts you even more, you sometimes are willing to tell small lies.
"I think I can do twenty." The problem when you love someone so much and that love is reciprocated they know when you lie. He knew. I turned to him, thinking of my mother in her in 50s and how youthful she still was,
"You will only be 50, still so young."
"But I won't age well," he said with a smirk, "so everyone will think I am 70, at least!" It is a running joke we have, that we will age so very horribly. And I guess when I put it in writing it isn't funny at all and yet it always leaves us with tears in our eyes from laughter.
And somehow all that sadness that enveloped us under that night sky seemed to be washed away in laughter and talking about how horribly wrinkly and old my poor husband will be at the age of 50. Through all our years together sadness and fear often weaves itself into the lives were are creating together and yet it has made our bond stronger knowing our days may be limited and that the future is always uncertain.
Monday, November 7, 2016
Matching Nightmares
I shuffled to the kitchen, turning on the coffee maker, waiting for my body and mind to catch up to the chatter coming from Kaylee, sitting at the kitchen table. The sun still hadn't made its way to our kitchen window sitting above the sink. A loud yawn enters the kitchen before my sleepy husband makes his way into the room to join us. The coffee grinder fills the cozy room with too much noise for conversation. I wait for the grinding to stop, replaced by the sound of water filtering through the fresh ground beans to say, "I had the worst dream last night." I hand the warm, steaming cup of coffee to my husband, pushing the grind and brew button again.
"What did you dream?" He inquired, sipping his coffee.
I went on to explain the dream I had (some said in code or miming to shield the little ears at the kitchen table). My port was accessed in my dream, but rather than the normal Huber needle and tubing, a tube as thick as my thumb was hanging directly from my port. I went to change the IV bag, but realized when the bag was removed I had nothing to clamp the open ended tubing. In a bizarre turn of events, my port became a vacuum, sucking air from the room into my port. This was a terrifying discovery as too much air pushed (or in this impossible case, sucked) into a port can lead to death. I shouted to my husband to grab some empty syringes and as he quickly unwrapped them I frantically tried to pull air from my port, until I saw it draw back blood, proof the air was removed from the internal tubing of my port. However, every time I removed the needle my port vacuum continued to suck up room air. It was a never ending cycle of pulling the air out of the tube, only to have it suck back in. The dream ends unresolved, as dreams often do.
My husband seemed a little more surprised by my dream than I expected. I have been known to have very vivid and bizarre dreams and this, although not my happiest of dreams, was no more or less bizarre than a pretty typical dream for me.
My husband's eyes grew wide and he told me, "I had almost the same exact dream two nights ago!" His dream differed slightly in that my tubing was cracked which was the cause of air getting into my port, but still the basic theme of a port filling with air and certain death was the exact same.
I guess when you have been married long enough even your nightmares start to match!
"What did you dream?" He inquired, sipping his coffee.
I went on to explain the dream I had (some said in code or miming to shield the little ears at the kitchen table). My port was accessed in my dream, but rather than the normal Huber needle and tubing, a tube as thick as my thumb was hanging directly from my port. I went to change the IV bag, but realized when the bag was removed I had nothing to clamp the open ended tubing. In a bizarre turn of events, my port became a vacuum, sucking air from the room into my port. This was a terrifying discovery as too much air pushed (or in this impossible case, sucked) into a port can lead to death. I shouted to my husband to grab some empty syringes and as he quickly unwrapped them I frantically tried to pull air from my port, until I saw it draw back blood, proof the air was removed from the internal tubing of my port. However, every time I removed the needle my port vacuum continued to suck up room air. It was a never ending cycle of pulling the air out of the tube, only to have it suck back in. The dream ends unresolved, as dreams often do.
My husband seemed a little more surprised by my dream than I expected. I have been known to have very vivid and bizarre dreams and this, although not my happiest of dreams, was no more or less bizarre than a pretty typical dream for me.
My husband's eyes grew wide and he told me, "I had almost the same exact dream two nights ago!" His dream differed slightly in that my tubing was cracked which was the cause of air getting into my port, but still the basic theme of a port filling with air and certain death was the exact same.
I guess when you have been married long enough even your nightmares start to match!
Monday, September 5, 2016
Six Years Later
My husband and I just celebrated out sixth wedding anniversary this year. I know six years of marriage, living together for seven, does not seem like a significant amount of time. However, the past few years has made me realize how much lives can change in such a short period of time and as a result why so many marriages fizzle out while still in their infancy.
I am thankful every single day to have my husband by my side as my best friend, my biggest supporter, and my strength in hardship. However, delving into our marriage six years ago, I had no idea what marriage was really about. We were in love, we made each other laugh, we loved spending time together, but how could we possibly know what we were really getting into?
When my husband and I first met, like so many other couples, our hobbies were aligned. We loved dancing late into the night, eating exotic foods (the more exotic the better), going to the movies, cooking and making up signature cocktails, and sleeping half the day away on weekends.
And then life happened.
We got jobs that required early mornings and staying up half the night wasn't so easy. We had a baby which meant sleeping in and watching movies all day was out of the question. And eating exotic foods in hip restaurants wasn't the relaxing experience it was in our early marriage with a kid that didn't have the same interest in more intense flavors and textures when it came to dining. And those days caring for a baby meant that things like cooking and making up cocktails (hello breastfeeding) just weren't realistic. Suddenly, our hobbies we enjoyed together we no longer feasible.
And this is where things in our marriage started to shift. We needed to redefine "us" with the demands of jobs and kids and all the intricacies of life.
And somehow we emerged from our young and carefree marriage as a couple that found completely new, but equally (or more exciting) hobbies that we enjoyed together. We found a true love for the outdoors, and playing poker. We started enjoying mornings drinking coffee together and chatting even when it meant chugging it side by side because we were running late. We started discussing the design of our backyard and found joy in landscaping together. We are not at all the same people that got married in 2010. We have different hobbies, different priorities, different lives than that young naïve couple.
But we were so very lucky that we find ourselves just as compatible with each other as the day we first met. Our lives look so drastically different, but we are still one another main priority. There is a deeper sense of togetherness after spending the last six years of marriage supporting each other during our hardest most unlovable moments. There is a stronger sense of unity after changing so very much and watching our lives unfold in ways we never anticipated and through it all we always put one another first.
I am thankful every single day to have my husband by my side as my best friend, my biggest supporter, and my strength in hardship. However, delving into our marriage six years ago, I had no idea what marriage was really about. We were in love, we made each other laugh, we loved spending time together, but how could we possibly know what we were really getting into?
When my husband and I first met, like so many other couples, our hobbies were aligned. We loved dancing late into the night, eating exotic foods (the more exotic the better), going to the movies, cooking and making up signature cocktails, and sleeping half the day away on weekends.
And then life happened.
We got jobs that required early mornings and staying up half the night wasn't so easy. We had a baby which meant sleeping in and watching movies all day was out of the question. And eating exotic foods in hip restaurants wasn't the relaxing experience it was in our early marriage with a kid that didn't have the same interest in more intense flavors and textures when it came to dining. And those days caring for a baby meant that things like cooking and making up cocktails (hello breastfeeding) just weren't realistic. Suddenly, our hobbies we enjoyed together we no longer feasible.
And this is where things in our marriage started to shift. We needed to redefine "us" with the demands of jobs and kids and all the intricacies of life.
And somehow we emerged from our young and carefree marriage as a couple that found completely new, but equally (or more exciting) hobbies that we enjoyed together. We found a true love for the outdoors, and playing poker. We started enjoying mornings drinking coffee together and chatting even when it meant chugging it side by side because we were running late. We started discussing the design of our backyard and found joy in landscaping together. We are not at all the same people that got married in 2010. We have different hobbies, different priorities, different lives than that young naïve couple.
But we were so very lucky that we find ourselves just as compatible with each other as the day we first met. Our lives look so drastically different, but we are still one another main priority. There is a deeper sense of togetherness after spending the last six years of marriage supporting each other during our hardest most unlovable moments. There is a stronger sense of unity after changing so very much and watching our lives unfold in ways we never anticipated and through it all we always put one another first.
Thursday, June 18, 2015
Never Growing Old
My husband and I went away for several days without the little one. There is something so renewing so refreshing about skipping town with the man you chose to marry all those years ago. The man who made a younger version of yourself nervous and giggly, but now makes you feel safe and content.. The man who in the past would make your face light up when you would talk about his warm eyes, strong arms, and addictive smile, but now fills your heart with a sense of home and belonging as you talk to your friends about the adventures the two of you, husband and wife, have recently experienced. The man that would make your heart flutter and your palms sweat when you saw his name on your caller ID, but is now the very first person you want to call with news, both good and bad.
After three years of parenting together it was nice to be able to focus on just the two of us for more than an overnight here and there. We spent our days hiking through the forest and our evenings laying in the warm sand listening to the ocean waves crash near our feet. We got tipsy at lunch and ran while bursting into fits of giggles because we almost missed our steam train ride back to the hotel. We had good wine, the freshest seafood, and amazing conversation.
The last evening after several days of rekindling the zest for our love that was ignited so many years before, we sat down to a romantic Italian dinner. As we were discussing what our evening plans entailed an elderly man was seated at a table across from us. He had trouble lowering his tired old body into the seat and his hands were shaky as he reached for the menu. He pulled out a magnifying glass to look at the menu and carefully sipped his wine while waiting to eat. My husband kept glancing at the man and would whisper, "that makes me so sad." Although, the man dining alone filled my heart with a sad loneliness as well I was surprised at how fixated my husband was on this gentlemen. As we finished out own meal the elderly man had finished his and left. My husband, now safe to speak freely, looked at me and so quietly so heartbreakingly in a voice barely above a whisper said, "That will be me someday." I instantly had clarity as to why my husband was so transfixed by this older man dining alone. I quickly felt my heart shatter with sadness for the man I love so very much because we both knew that realistically CF will take me long before either of us sees old age. I was reminded again how heartbreaking this disease is and that even though we live each day as if life were normal there is always the looming knowledge, the heavy sadness that this disease is killing me and leaves me little chance of ever growing old with my husband. It reminded me how angry I was at this disease for what it does to me, how it destroys my body and my life, but most of all that it takes all those who I love the most in the world and drags them down with it.
We had a moment of understanding and acknowledgment of how this disease can break our hearts and then in true fashion to my husband he followed it quickly with, "at least I won't have to argue with anyone about what kind of wine to order." And just like that we pushed the fear behind us and moved in with life because we know our days are numbered and our moments precious so we can't dwell in the what ifs and sadness.
After three years of parenting together it was nice to be able to focus on just the two of us for more than an overnight here and there. We spent our days hiking through the forest and our evenings laying in the warm sand listening to the ocean waves crash near our feet. We got tipsy at lunch and ran while bursting into fits of giggles because we almost missed our steam train ride back to the hotel. We had good wine, the freshest seafood, and amazing conversation.
The last evening after several days of rekindling the zest for our love that was ignited so many years before, we sat down to a romantic Italian dinner. As we were discussing what our evening plans entailed an elderly man was seated at a table across from us. He had trouble lowering his tired old body into the seat and his hands were shaky as he reached for the menu. He pulled out a magnifying glass to look at the menu and carefully sipped his wine while waiting to eat. My husband kept glancing at the man and would whisper, "that makes me so sad." Although, the man dining alone filled my heart with a sad loneliness as well I was surprised at how fixated my husband was on this gentlemen. As we finished out own meal the elderly man had finished his and left. My husband, now safe to speak freely, looked at me and so quietly so heartbreakingly in a voice barely above a whisper said, "That will be me someday." I instantly had clarity as to why my husband was so transfixed by this older man dining alone. I quickly felt my heart shatter with sadness for the man I love so very much because we both knew that realistically CF will take me long before either of us sees old age. I was reminded again how heartbreaking this disease is and that even though we live each day as if life were normal there is always the looming knowledge, the heavy sadness that this disease is killing me and leaves me little chance of ever growing old with my husband. It reminded me how angry I was at this disease for what it does to me, how it destroys my body and my life, but most of all that it takes all those who I love the most in the world and drags them down with it.
We had a moment of understanding and acknowledgment of how this disease can break our hearts and then in true fashion to my husband he followed it quickly with, "at least I won't have to argue with anyone about what kind of wine to order." And just like that we pushed the fear behind us and moved in with life because we know our days are numbered and our moments precious so we can't dwell in the what ifs and sadness.
Saturday, September 17, 2011
Don't Go Too Soon
September has become my favorite month because along with the start of autumn, September is also home to my anniversary month. We have been married a year which may not seem long, but it is hard for me to remember life without my husband. I cannot begin to express with written words what he means to me and I have yet to find spoken words that can properly represent my feelings towards my husband.
Often times late at night when we are cuddled in bed just about to doze off or when I am looking through old photographs of our laughing faces and rosy cheeks conjuring up memories of wonderful times we spent together I get these pains that reverberate through my very core. The root of this pain is heinous disease that stands in the way of watching our love evolve as we grow old and grey and wise. How I would love to hold my husband's hand when it is wrinkled and covered in soft, tan liver spots. I would love to touch the soft papery feel of his skin that is so unique to those who have seen more than I ever will. I want to pluck each other's grey hairs just to watch 4 grow in its place. I want to get to the point that plucking grey hairs is a humerous impossibility lest we lose all the hair on our heads. I want to watch how we persevere through slow and achy joints and trouble getting off the couch because our knees have done it a few too many times. I want to hold my husband when wrinkles have overtaken our youthful beauty. I wish these things on all I have, but if wishing made things true we would never have to deal with the merciless killer residing in my body.
I find myself feeling I must fit all the years of "I love you" and "You are my world" or "I would give anything to spend the rest of my life in your arms" into the years we do have. I want to bombard his heart with all my words of love so when I am gone he will still have a lifetime's worth of my words. I want to be sure that when I am gone he will never for a second doubt how much he means to me and how badly I wanted us to have a forever after. I find I sometimes miss him knowing I will be leaving him too soon and so I wrap my arms around him just a little bit tighter and snuggle close just a little bit longer and whisper "I love you" for the 100th time that week so that I can bring his memory with me into eternity.
Often times late at night when we are cuddled in bed just about to doze off or when I am looking through old photographs of our laughing faces and rosy cheeks conjuring up memories of wonderful times we spent together I get these pains that reverberate through my very core. The root of this pain is heinous disease that stands in the way of watching our love evolve as we grow old and grey and wise. How I would love to hold my husband's hand when it is wrinkled and covered in soft, tan liver spots. I would love to touch the soft papery feel of his skin that is so unique to those who have seen more than I ever will. I want to pluck each other's grey hairs just to watch 4 grow in its place. I want to get to the point that plucking grey hairs is a humerous impossibility lest we lose all the hair on our heads. I want to watch how we persevere through slow and achy joints and trouble getting off the couch because our knees have done it a few too many times. I want to hold my husband when wrinkles have overtaken our youthful beauty. I wish these things on all I have, but if wishing made things true we would never have to deal with the merciless killer residing in my body.
I find myself feeling I must fit all the years of "I love you" and "You are my world" or "I would give anything to spend the rest of my life in your arms" into the years we do have. I want to bombard his heart with all my words of love so when I am gone he will still have a lifetime's worth of my words. I want to be sure that when I am gone he will never for a second doubt how much he means to me and how badly I wanted us to have a forever after. I find I sometimes miss him knowing I will be leaving him too soon and so I wrap my arms around him just a little bit tighter and snuggle close just a little bit longer and whisper "I love you" for the 100th time that week so that I can bring his memory with me into eternity.
Wednesday, June 8, 2011
I Hope You Like Salt
Just a random quick note. My husband and I were on the couch talking the other night and he gave me a big fat kiss on my forehead. Then without much thought he wiped his lips with the back of his hand and said, "whoa salty!" It was a very warm sunny day and I have CF, enough said. I always thought that being a salty was a perk, but I guess you have to be a fan of salt to agree.
Saturday, May 28, 2011
A CFer's Spouse
I commend all CF spouses. It truly takes a special person to marry a CFer. Sure we CFers are exceptionally smart, hilariously funny, extremely attractive, charming, and strong (this is a proven fact, just ask any CFer), but we do have a few extra bags we carry around.
I have to say my husband is AMAZING!!!!! He is such a rock when I am scared or upset with my CF. He knows exactly how to calm my nerves, when to talk and when to just listen. When I have had horrible PICC line reactions due to sensitive skin, he learned how to clean and sterilize my PICC site and did it everyday so I didn't need to go to the outpatient every day. When I have a "cough attack" at night he rolls out of bed, gets my percussion clappers and will "beat" the plug out of me so we can both go back to sleep. This is the biggest life saver ever!!! Prior to marrying my husband when I would have nighttime cough attacks I would try to sleep though my stupid cough and was always too tired to get up and do a treatment. I was often successful in falling back to sleep in a restless sleep because my body is working so hard. This resulted in a non-stop cough that would last for hours. Now I get a "beating" and can go back to sleep and get a good nights rest!
My husband is so helpful around the house. I can't use bleach because it makes my lungs burn for days so he cleans the shower/tub/bathroom. Our bathroom is very small and doesn't have a fan so the bleach just hovers in the bathroom. He just makes sure that I don't use any cleaners that could negatively impact my lungs. Before this brag session goes on too long I just want to add that he also MAKES me eat when I am sick and don't feel like it. Trust me, I am stubborn and he is amazingly brave to try to make me do something. It is even more amazing that it works...sometimes.
I am sure my husband is not that different from other spouses of CFers. I think they have to be some of the most caring, loving, patient people in the world.
I have to say my husband is AMAZING!!!!! He is such a rock when I am scared or upset with my CF. He knows exactly how to calm my nerves, when to talk and when to just listen. When I have had horrible PICC line reactions due to sensitive skin, he learned how to clean and sterilize my PICC site and did it everyday so I didn't need to go to the outpatient every day. When I have a "cough attack" at night he rolls out of bed, gets my percussion clappers and will "beat" the plug out of me so we can both go back to sleep. This is the biggest life saver ever!!! Prior to marrying my husband when I would have nighttime cough attacks I would try to sleep though my stupid cough and was always too tired to get up and do a treatment. I was often successful in falling back to sleep in a restless sleep because my body is working so hard. This resulted in a non-stop cough that would last for hours. Now I get a "beating" and can go back to sleep and get a good nights rest!
My husband is so helpful around the house. I can't use bleach because it makes my lungs burn for days so he cleans the shower/tub/bathroom. Our bathroom is very small and doesn't have a fan so the bleach just hovers in the bathroom. He just makes sure that I don't use any cleaners that could negatively impact my lungs. Before this brag session goes on too long I just want to add that he also MAKES me eat when I am sick and don't feel like it. Trust me, I am stubborn and he is amazingly brave to try to make me do something. It is even more amazing that it works...sometimes.
I am sure my husband is not that different from other spouses of CFers. I think they have to be some of the most caring, loving, patient people in the world.
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