ScottLippmann
New member
Sonia,
I completely understand where you are coming from. Before I went into the hospital over a year and a half ago I was extremely vigorous with my treatments and working out. My weight routine was getting pretty crazy and I was feeling really great, and normal. I had started dating someone and felt my life was in good order. Then I went in for a clinic appointment, my g/f at the time came with me too. I thought "This will be great, spend the day in London, get some food, hang out, and go have a great clinic" Not so. My FEV1 had fallen below 28% and I was back into a bed at the hospital that night.
I felt the exact same way you are feeling right now. I was at a total loss for words and couldn't understand. When I got out I didn't start back at the gym because I felt that it didn't matter what I did the numbers would go down regardless. That was something my g/f at the time could not understand and I don't think anyone without CF could understand that point of view for that matter. It almost seems like a futile effort at times.
Then one day I decided to go the gym again. I didn't like how I had lost the one major part of my life that really helped me feel like I could do something that people with normal lungs could do so well, and keep up at the very least. So I started doing weights again and have kept up pretty steady since then.
And I was feeling pretty good, but then I saw this forum and decided to join and see all these people in their late 20's, 30's and up with FEV1 results 50% higher. And for a moment I thought again what I was thinking that one visit that shot me down. <b>No one's fault, no one brought me down on this forum! I place NO blame.</b> But the last thing I want to do is lose that part of my life again that helps me feel like I have control.
I suppose that's the part that we need more than anything else, that feeling that we are controlling this. And when we see these tests results and they slip away despite best efforts that feeling of control slips with them.
I guess the only thing that can be done when we gets results like you have received is try to get an understanding as to why and try and aim up for next time. As people have posted, the numbers fluctuate throughout the day, bad time of year, not enough rest before an appointment. I even find that if I eat before an appointment my results will slip, so I skip all my meals for that day until the appointment is done. I know that's not great energy wise, and it's probably not recommended. <img src="i/expressions/face-icon-small-smile.gif" border="0">
You say that i'm motivated, but beleive me, I wish I was as strong and positive as you think I am. And I think I speak for everyone here, despite being new to this forum, that no one thinks you're whining!
From all the threads I've read on here, I think for once this is a place where people actually have about as complete an understanding as to where each poster is coming from as one could hope for.
Just remember, sometimes the illusion of control can be as beneficial as having the control itself. Without either that's when your hope is gone. Hold onto it. Look at those tests and work even harder for next time. I'm going to do the same and push myself up for my next appointment in 4 months. And I can honestly say it's thanks to everyone on this site. It really helped put myself into perspective and realize that I could be working even harder.
I know this has rambled on for a bit now. Sorry to anyone who actually read this far. But I'll post this for all also. I wrote this when I was feeling very bad about everything and didn't want to do anything anymore. Now I think it's more motivating than anything.
It's sappy... sorry <img src="i/expressions/face-icon-small-smile.gif" border="0">
<i><b>Rusted Chains</b></i>
These chains that are binding,
Holding too tightly,
I struggle to breathe,
Using all of my might
But they do not give,
Not budge even slightly,
I scream out for help,
My words travel so lightly
I kick and I push,
I try what I can,
My mind is still slipping,
Please give me your hand
I can't do this for long,
Time is passing so fast,
A touch from your fingers,
Remind me of the past
The chains were much brighter,
And I wore them with pride,
But these tears have they weathered,
I can't stop but I've tried
Please give me your hand,
Help loosen their grip,
Help free me from sorrow,
Help make these chains slip.
Scott - 27 m
I completely understand where you are coming from. Before I went into the hospital over a year and a half ago I was extremely vigorous with my treatments and working out. My weight routine was getting pretty crazy and I was feeling really great, and normal. I had started dating someone and felt my life was in good order. Then I went in for a clinic appointment, my g/f at the time came with me too. I thought "This will be great, spend the day in London, get some food, hang out, and go have a great clinic" Not so. My FEV1 had fallen below 28% and I was back into a bed at the hospital that night.
I felt the exact same way you are feeling right now. I was at a total loss for words and couldn't understand. When I got out I didn't start back at the gym because I felt that it didn't matter what I did the numbers would go down regardless. That was something my g/f at the time could not understand and I don't think anyone without CF could understand that point of view for that matter. It almost seems like a futile effort at times.
Then one day I decided to go the gym again. I didn't like how I had lost the one major part of my life that really helped me feel like I could do something that people with normal lungs could do so well, and keep up at the very least. So I started doing weights again and have kept up pretty steady since then.
And I was feeling pretty good, but then I saw this forum and decided to join and see all these people in their late 20's, 30's and up with FEV1 results 50% higher. And for a moment I thought again what I was thinking that one visit that shot me down. <b>No one's fault, no one brought me down on this forum! I place NO blame.</b> But the last thing I want to do is lose that part of my life again that helps me feel like I have control.
I suppose that's the part that we need more than anything else, that feeling that we are controlling this. And when we see these tests results and they slip away despite best efforts that feeling of control slips with them.
I guess the only thing that can be done when we gets results like you have received is try to get an understanding as to why and try and aim up for next time. As people have posted, the numbers fluctuate throughout the day, bad time of year, not enough rest before an appointment. I even find that if I eat before an appointment my results will slip, so I skip all my meals for that day until the appointment is done. I know that's not great energy wise, and it's probably not recommended. <img src="i/expressions/face-icon-small-smile.gif" border="0">
You say that i'm motivated, but beleive me, I wish I was as strong and positive as you think I am. And I think I speak for everyone here, despite being new to this forum, that no one thinks you're whining!
From all the threads I've read on here, I think for once this is a place where people actually have about as complete an understanding as to where each poster is coming from as one could hope for.
Just remember, sometimes the illusion of control can be as beneficial as having the control itself. Without either that's when your hope is gone. Hold onto it. Look at those tests and work even harder for next time. I'm going to do the same and push myself up for my next appointment in 4 months. And I can honestly say it's thanks to everyone on this site. It really helped put myself into perspective and realize that I could be working even harder.
I know this has rambled on for a bit now. Sorry to anyone who actually read this far. But I'll post this for all also. I wrote this when I was feeling very bad about everything and didn't want to do anything anymore. Now I think it's more motivating than anything.
It's sappy... sorry <img src="i/expressions/face-icon-small-smile.gif" border="0">
<i><b>Rusted Chains</b></i>
These chains that are binding,
Holding too tightly,
I struggle to breathe,
Using all of my might
But they do not give,
Not budge even slightly,
I scream out for help,
My words travel so lightly
I kick and I push,
I try what I can,
My mind is still slipping,
Please give me your hand
I can't do this for long,
Time is passing so fast,
A touch from your fingers,
Remind me of the past
The chains were much brighter,
And I wore them with pride,
But these tears have they weathered,
I can't stop but I've tried
Please give me your hand,
Help loosen their grip,
Help free me from sorrow,
Help make these chains slip.
Scott - 27 m