What do you do with your life?

[CFkitty]

I completed college and worked for a number of years. Around the age of 30, while working a high-profile job at a major internet company, I was going in and out the hospital way too frequently for way too long, and missed a lot of work. I sometimes worked from the hospital (dialing into work via old-school dial-up internet), and at home during recovery periods, but my job needed me THERE to be effective.

I went on short term disability first, then came back to work part time, changing my responsibilities and duties. I got sick again and went part-time disability again, and conversations with my HR, my boss, my husband and doctor led me to apply for long-term disability.

I've done things for hobbies during healthier spells, and belong to a few organizations, but the past 2-3 years, I have entered a new "sick phase" that I can't seem to get out of, and that greatly limit what I "do". Among several multiply resistant pneumoniae that only respond to IVs, MRSA, recurring "regular" staph, and chronic pancreatitis, along with diabetes, GERD, panic/anxiety and several other conditions, I have maybe 1-3 good hours a day. Maybe every other week, I have a good full day.

I've learned that I don't have to be defined by paid work or by my illness, but it's a hard lesson to learn. My first priority is my health, then my house/family. Anything more than that is gravy.

I say do what you can until you can't anymore. Then find new ways to occupy your mind and soul. At 39, I am learning my place and my reason for being in this world. My mind still works and I have figured out how I can help others and even feel productive in some ways. Try everything. See what sticks and what works with your level of illness.

Good luck.

 

[CFkitty]

I completed college and worked for a number of years. Around the age of 30, while working a high-profile job at a major internet company, I was going in and out the hospital way too frequently for way too long, and missed a lot of work. I sometimes worked from the hospital (dialing into work via old-school dial-up internet), and at home during recovery periods, but my job needed me THERE to be effective.

I went on short term disability first, then came back to work part time, changing my responsibilities and duties. I got sick again and went part-time disability again, and conversations with my HR, my boss, my husband and doctor led me to apply for long-term disability.

I've done things for hobbies during healthier spells, and belong to a few organizations, but the past 2-3 years, I have entered a new "sick phase" that I can't seem to get out of, and that greatly limit what I "do". Among several multiply resistant pneumoniae that only respond to IVs, MRSA, recurring "regular" staph, and chronic pancreatitis, along with diabetes, GERD, panic/anxiety and several other conditions, I have maybe 1-3 good hours a day. Maybe every other week, I have a good full day.

I've learned that I don't have to be defined by paid work or by my illness, but it's a hard lesson to learn. My first priority is my health, then my house/family. Anything more than that is gravy.

I say do what you can until you can't anymore. Then find new ways to occupy your mind and soul. At 39, I am learning my place and my reason for being in this world. My mind still works and I have figured out how I can help others and even feel productive in some ways. Try everything. See what sticks and what works with your level of illness.

Good luck.

 

[CFkitty]

I completed college and worked for a number of years. Around the age of 30, while working a high-profile job at a major internet company, I was going in and out the hospital way too frequently for way too long, and missed a lot of work. I sometimes worked from the hospital (dialing into work via old-school dial-up internet), and at home during recovery periods, but my job needed me THERE to be effective.
<br />
<br />I went on short term disability first, then came back to work part time, changing my responsibilities and duties. I got sick again and went part-time disability again, and conversations with my HR, my boss, my husband and doctor led me to apply for long-term disability.
<br />
<br />I've done things for hobbies during healthier spells, and belong to a few organizations, but the past 2-3 years, I have entered a new "sick phase" that I can't seem to get out of, and that greatly limit what I "do". Among several multiply resistant pneumoniae that only respond to IVs, MRSA, recurring "regular" staph, and chronic pancreatitis, along with diabetes, GERD, panic/anxiety and several other conditions, I have maybe 1-3 good hours a day. Maybe every other week, I have a good full day.
<br />
<br />I've learned that I don't have to be defined by paid work or by my illness, but it's a hard lesson to learn. My first priority is my health, then my house/family. Anything more than that is gravy.
<br />
<br />I say do what you can until you can't anymore. Then find new ways to occupy your mind and soul. At 39, I am learning my place and my reason for being in this world. My mind still works and I have figured out how I can help others and even feel productive in some ways. Try everything. See what sticks and what works with your level of illness.
<br />
<br />Good luck.

 

[lgs]

I think this is a really important and tough question. It is an issue I have grappled with all of my adult life. And I think as the adult CF population continues to grow, it is an issue that the clinic social workers will have to look at more closely and spend more time addressing with each individual patient.
Even when my daily experience of CF wasn't terribly demanding, I always felt like the career I chose should be very meaningful since I had a limited amount of time (in other words, I shouldn't "squander" my precious time here on earth by pushing papers around on a desk). But that might have been erroneous logic, because I wasted many years trying to figure out my "true calling" instead of getting busy and working while I could.
Now that CF is limiting my life and demanding more and more daily care and maintenance (and now that I can never be sure if it will be a good day or a bad day in terms of coughing, energy, etc), I have to be even more selective about which activities I devote my time and energy to. Like CFKitty said, my number one priority is maintaining my health, so that I can take care of my family and my home and be around for as long as possible. Being a mom and a wife and a homemaker takes up quite a bit of energy, as do the things I need to do to maintain my health. So, there's not a lot of energy and time left over for anything else. BUT I think it is of utmost importance to find something that stimulates your mind, keeps you actively engaged in life, something to do that brings you pleasure and gives you something to look forward to or to accomplish. There is always something new to learn, always some way to be productive.

Good luck on your journey.

 

[lgs]

I think this is a really important and tough question. It is an issue I have grappled with all of my adult life. And I think as the adult CF population continues to grow, it is an issue that the clinic social workers will have to look at more closely and spend more time addressing with each individual patient.
Even when my daily experience of CF wasn't terribly demanding, I always felt like the career I chose should be very meaningful since I had a limited amount of time (in other words, I shouldn't "squander" my precious time here on earth by pushing papers around on a desk). But that might have been erroneous logic, because I wasted many years trying to figure out my "true calling" instead of getting busy and working while I could.
Now that CF is limiting my life and demanding more and more daily care and maintenance (and now that I can never be sure if it will be a good day or a bad day in terms of coughing, energy, etc), I have to be even more selective about which activities I devote my time and energy to. Like CFKitty said, my number one priority is maintaining my health, so that I can take care of my family and my home and be around for as long as possible. Being a mom and a wife and a homemaker takes up quite a bit of energy, as do the things I need to do to maintain my health. So, there's not a lot of energy and time left over for anything else. BUT I think it is of utmost importance to find something that stimulates your mind, keeps you actively engaged in life, something to do that brings you pleasure and gives you something to look forward to or to accomplish. There is always something new to learn, always some way to be productive.

Good luck on your journey.

 

[lgs]

I think this is a really important and tough question. It is an issue I have grappled with all of my adult life. And I think as the adult CF population continues to grow, it is an issue that the clinic social workers will have to look at more closely and spend more time addressing with each individual patient.
<br />Even when my daily experience of CF wasn't terribly demanding, I always felt like the career I chose should be very meaningful since I had a limited amount of time (in other words, I shouldn't "squander" my precious time here on earth by pushing papers around on a desk). But that might have been erroneous logic, because I wasted many years trying to figure out my "true calling" instead of getting busy and working while I could.
<br />Now that CF is limiting my life and demanding more and more daily care and maintenance (and now that I can never be sure if it will be a good day or a bad day in terms of coughing, energy, etc), I have to be even more selective about which activities I devote my time and energy to. Like CFKitty said, my number one priority is maintaining my health, so that I can take care of my family and my home and be around for as long as possible. Being a mom and a wife and a homemaker takes up quite a bit of energy, as do the things I need to do to maintain my health. So, there's not a lot of energy and time left over for anything else. BUT I think it is of utmost importance to find something that stimulates your mind, keeps you actively engaged in life, something to do that brings you pleasure and gives you something to look forward to or to accomplish. There is always something new to learn, always some way to be productive.
<br />
<br />Good luck on your journey.

 

[imported_Momto2]

Sure! I was a biologist- degrees in animal behavior/ecology and another in environmental medicine/toxicology. Love research, dont like the people part much. Then switched over to teaching and training on horses, had my own stable and business. When we decided to have a family (2 kids) I did the stay at home mom thing. Had to close the competitive horse thing down, lungs got too bad, family first. I do a lot of charity and nonprofit work now, write poetry, carve wood, workout, raise kids, take care of my aging parents, read incessently, and am finishing up writing a book. But seriously, I have done stuff from marine bio in Belize, to biochem at MIT, to running 5K road races, championship with horses, you name it. Do what you want with your life, if the CF changes the plans somewhat, so be it, but dont let that keep you from dreaming big dreams and going for it!

 

[imported_Momto2]

Sure! I was a biologist- degrees in animal behavior/ecology and another in environmental medicine/toxicology. Love research, dont like the people part much. Then switched over to teaching and training on horses, had my own stable and business. When we decided to have a family (2 kids) I did the stay at home mom thing. Had to close the competitive horse thing down, lungs got too bad, family first. I do a lot of charity and nonprofit work now, write poetry, carve wood, workout, raise kids, take care of my aging parents, read incessently, and am finishing up writing a book. But seriously, I have done stuff from marine bio in Belize, to biochem at MIT, to running 5K road races, championship with horses, you name it. Do what you want with your life, if the CF changes the plans somewhat, so be it, but dont let that keep you from dreaming big dreams and going for it!

 

[imported_Momto2]

Sure! I was a biologist- degrees in animal behavior/ecology and another in environmental medicine/toxicology. Love research, dont like the people part much. Then switched over to teaching and training on horses, had my own stable and business. When we decided to have a family (2 kids) I did the stay at home mom thing. Had to close the competitive horse thing down, lungs got too bad, family first. I do a lot of charity and nonprofit work now, write poetry, carve wood, workout, raise kids, take care of my aging parents, read incessently, and am finishing up writing a book. But seriously, I have done stuff from marine bio in Belize, to biochem at MIT, to running 5K road races, championship with horses, you name it. Do what you want with your life, if the CF changes the plans somewhat, so be it, but dont let that keep you from dreaming big dreams and going for it!

 

[Solo]

Well I dedicated my entire existence to taking care of myself. Nobody knows my body like I do, as such, nobody could possibly take care of me as good as I do. But for over 11 years I've been working at a crappy job doing crappy work. I keep thinking back to what could have been. 1 single mistake has the potential to ruin your whole life, even if you don't see the consequences at the time. When I was growing up, I wanted to be "cool" like the rest of the kids and began drinking, heavily. I so much wanted to forget that I had CF and thus I felt I had to "work harder" to fit in. Nevertheless, I couldn't control myself around alcohol. If I were drinking with people and they stopped, I would always drink 1 more just so I could 1 up them. So all that drinking, even though it didn't negatively impact my health at all, did negatively affect my finances and personal life. I had gotten 2 D.U.I.s and probably paid the courts over $10 grand. In my early 20s, I was going to college for auto mechanics, but had gotten a second D.U.I. and had to drop out as they took my license and I needed hands on dealership experience and no dealership would hire me being is I had no license. So because of my sketchy past I am in a dead end job. I make a decent wage, but that's only because of my seniority.

I mostly keep to myself now as mostly all of my friends love drinking. A good friend of mine works at a beer distributor and is probably drunk 24/7. But I recently got into fish keeping. It's a fantastic feeling being responsible for a living being. When I enter my room, my fish swim the length of the tank, moving their fins back and forth- it looks like a dog wagging its tail. My fish have babies every month or so, and a pet shop said they will pay me for some. So I guess you can say I'm an entrepreneur!

So I guess I lead a pretty lackluster life. But you can't say I don't do anything or am lazy. I pat myself on the back for my almost uncanny ability to combat CF, Diabetes and Osteopenia with very little glitches!

 

[Solo]

Well I dedicated my entire existence to taking care of myself. Nobody knows my body like I do, as such, nobody could possibly take care of me as good as I do. But for over 11 years I've been working at a crappy job doing crappy work. I keep thinking back to what could have been. 1 single mistake has the potential to ruin your whole life, even if you don't see the consequences at the time. When I was growing up, I wanted to be "cool" like the rest of the kids and began drinking, heavily. I so much wanted to forget that I had CF and thus I felt I had to "work harder" to fit in. Nevertheless, I couldn't control myself around alcohol. If I were drinking with people and they stopped, I would always drink 1 more just so I could 1 up them. So all that drinking, even though it didn't negatively impact my health at all, did negatively affect my finances and personal life. I had gotten 2 D.U.I.s and probably paid the courts over $10 grand. In my early 20s, I was going to college for auto mechanics, but had gotten a second D.U.I. and had to drop out as they took my license and I needed hands on dealership experience and no dealership would hire me being is I had no license. So because of my sketchy past I am in a dead end job. I make a decent wage, but that's only because of my seniority.

I mostly keep to myself now as mostly all of my friends love drinking. A good friend of mine works at a beer distributor and is probably drunk 24/7. But I recently got into fish keeping. It's a fantastic feeling being responsible for a living being. When I enter my room, my fish swim the length of the tank, moving their fins back and forth- it looks like a dog wagging its tail. My fish have babies every month or so, and a pet shop said they will pay me for some. So I guess you can say I'm an entrepreneur!

So I guess I lead a pretty lackluster life. But you can't say I don't do anything or am lazy. I pat myself on the back for my almost uncanny ability to combat CF, Diabetes and Osteopenia with very little glitches!

 

[Solo]

Well I dedicated my entire existence to taking care of myself. Nobody knows my body like I do, as such, nobody could possibly take care of me as good as I do. But for over 11 years I've been working at a crappy job doing crappy work. I keep thinking back to what could have been. 1 single mistake has the potential to ruin your whole life, even if you don't see the consequences at the time. When I was growing up, I wanted to be "cool" like the rest of the kids and began drinking, heavily. I so much wanted to forget that I had CF and thus I felt I had to "work harder" to fit in. Nevertheless, I couldn't control myself around alcohol. If I were drinking with people and they stopped, I would always drink 1 more just so I could 1 up them. So all that drinking, even though it didn't negatively impact my health at all, did negatively affect my finances and personal life. I had gotten 2 D.U.I.s and probably paid the courts over $10 grand. In my early 20s, I was going to college for auto mechanics, but had gotten a second D.U.I. and had to drop out as they took my license and I needed hands on dealership experience and no dealership would hire me being is I had no license. So because of my sketchy past I am in a dead end job. I make a decent wage, but that's only because of my seniority.
<br />
<br />I mostly keep to myself now as mostly all of my friends love drinking. A good friend of mine works at a beer distributor and is probably drunk 24/7. But I recently got into fish keeping. It's a fantastic feeling being responsible for a living being. When I enter my room, my fish swim the length of the tank, moving their fins back and forth- it looks like a dog wagging its tail. My fish have babies every month or so, and a pet shop said they will pay me for some. So I guess you can say I'm an entrepreneur!
<br />
<br />So I guess I lead a pretty lackluster life. But you can't say I don't do anything or am lazy. I pat myself on the back for my almost uncanny ability to combat CF, Diabetes and Osteopenia with very little glitches!
<br />
<br />