Guest guest Posted January 24, 2009 Report Share Posted January 24, 2009 Hi all, I feel so lucky and feel kind of stupid asking these things. There are so many here that are so sick and so far I just feel better having oxygen. I am having such a hard time keeping my nose open to breathe. I am using an AYR nasel spay and it just doesn't do it. I just finished using some Nasonex and that has been helpful but the saline solution doesn't help at all. Any other ideas? Also, I have noticed something strange. I think I have plenty of oxygen but I seem to be getting weaker. I don't understand it since I exercise vigorously 4 days a week for an hour each day. My portable seems almost too heavy to hold where last month it didn't and I am having a difficult time doing things. Is this part of IPF? I don't know if I should tell my doctor or if it is all in my mind and I want to shirk doing things. I am completely baffeled. I should be getting stronger but I have been getting weaker. Confused. I have been busy and active and my spirits are high and I'm doing things like baking bread and having fun with my friends and my animals. Also do any of you know about COPD? I have a friend who has severe COPD but her doctor says oxygen won't help her it may make her more comfortable but it won't help her yet she doesn't lose her breath like I do going from the living room to the kitchen and I have a small house! I think my IPF is mild at the moment and don't understand why my symptoms seem to be worse then hers and she is severe. Am I just making this up in my mind that I get breathless if I don't have oxygen with such minimal exertion? I feel like I am a fraud and should just throw my oxygen out and get on with life. Also when doing tasks I seem to have to rest in between. I just can't zip thru my kitchen cleaning it. I take the dishes out of the dishwasher and then I need to rest. Then I rinse some dishes off and need to rest. Am I making this up? Blue Flyer Joyce 63 AZ IPF 11-08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2009 Report Share Posted January 26, 2009 Pink Joyce, yes, I have noticed that when I am at rest I feel good! But I was walking in to the pool this afternoon and when I got to the lockers, I relaxed for a minute and then took my O2 level and it was 92%. I had increased my oxygen too. It has only been months since I got oxygen and I seem to need more of it. I wonder if it is actually adicting? I mean the increase isn't real high but it is an increase and sometimes it seems that I am not rebounding as fast as I used too but I think I am sensing this because I am using the Oximeter where before I didn't have anything to measure O2. Maybe I haven't gotten worse..maybe it is fautly perception... I think in COPD that if they use oxygen it is a small amount. Of course I am on a small amount. But it sure does feel like I am somehow scherking! I mean when I sit I feel so good...but I will get used to it. Blue Flyer JOyce breathing and weaknessTo: "Breathe-Support" <Breathe-Support >Date: Saturday, January 24, 2009, 12:58 PM Hi all, I feel so lucky and feel kind of stupid asking these things. There are so many here that are so sick and so far I just feel better having oxygen. I am having such a hard time keeping my nose open to breathe. I am using an AYR nasel spay and it just doesn't do it. I just finished using some Nasonex and that has been helpful but the saline solution doesn't help at all. Any other ideas? Also, I have noticed something strange. I think I have plenty of oxygen but I seem to be getting weaker. I don't understand it since I exercise vigorously 4 days a week for an hour each day. My portable seems almost too heavy to hold where last month it didn't and I am having a difficult time doing things. Is this part of IPF? I don't know if I should tell my doctor or if it is all in my mind and I want to shirk doing things. I am completely baffeled. I should be getting stronger but I have been getting weaker. Confused. I have been busy and active and my spirits are high and I'm doing things like baking bread and having fun with my friends and my animals. Also do any of you know about COPD? I have a friend who has severe COPD but her doctor says oxygen won't help her it may make her more comfortable but it won't help her yet she doesn't lose her breath like I do going from the living room to the kitchen and I have a small house! I think my IPF is mild at the moment and don't understand why my symptoms seem to be worse then hers and she is severe. Am I just making this up in my mind that I get breathless if I don't have oxygen with such minimal exertion? I feel like I am a fraud and should just throw my oxygen out and get on with life. Also when doing tasks I seem to have to rest in between. I just can't zip thru my kitchen cleaning it. I take the dishes out of the dishwasher and then I need to rest. Then I rinse some dishes off and need to rest. Am I making this up? Blue Flyer Joyce 63 AZ IPF 11-08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2009 Report Share Posted January 26, 2009 Joyce, Oxygen is not addictive! Please dismiss that notion immediately. Your body needs it to function properly and if your lungs are not capable of processing what's available in the atmosphere than you must have supplemental. You are not somehow "shirking" or taking the easy way out when you use it. Your body has to have it, it's not a drug, it's what allows us all to function. People with pulmonary fibrosis sometimes need large amounts to be able to do 'normal' things. I need 12 liters using a mask when I'm on the treadmill. Is that taking the 'easy way out'? If I didn't use it I could not exercise and that would be the easy way. You've got to somehow reverse your thinking about the oxygen. It's not a sign of weakness or a character flaw. It's merely a tool that allows us to live. Beth in North Carolina Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Monday, January 26, 2009 9:35:19 PMSubject: Re: breathing and weakness Pink Joyce, yes, I have noticed that when I am at rest I feel good! But I was walking in to the pool this afternoon and when I got to the lockers, I relaxed for a minute and then took my O2 level and it was 92%. I had increased my oxygen too. It has only been months since I got oxygen and I seem to need more of it. I wonder if it is actually adicting? I mean the increase isn't real high but it is an increase and sometimes it seems that I am not rebounding as fast as I used too but I think I am sensing this because I am using the Oximeter where before I didn't have anything to measure O2. Maybe I haven't gotten worse..maybe it is fautly perception.. . I think in COPD that if they use oxygen it is a small amount. Of course I am on a small amount. But it sure does feel like I am somehow scherking! I mean when I sit I feel so good...but I will get used to it. Blue Flyer JOyce breathing and weaknessTo: "Breathe-Support" <Breathe-Support@ yahoogroups. com>Date: Saturday, January 24, 2009, 12:58 PM Hi all, I feel so lucky and feel kind of stupid asking these things. There are so many here that are so sick and so far I just feel better having oxygen. I am having such a hard time keeping my nose open to breathe. I am using an AYR nasel spay and it just doesn't do it. I just finished using some Nasonex and that has been helpful but the saline solution doesn't help at all. Any other ideas? Also, I have noticed something strange. I think I have plenty of oxygen but I seem to be getting weaker. I don't understand it since I exercise vigorously 4 days a week for an hour each day. My portable seems almost too heavy to hold where last month it didn't and I am having a difficult time doing things. Is this part of IPF? I don't know if I should tell my doctor or if it is all in my mind and I want to shirk doing things. I am completely baffeled. I should be getting stronger but I have been getting weaker. Confused. I have been busy and active and my spirits are high and I'm doing things like baking bread and having fun with my friends and my animals. Also do any of you know about COPD? I have a friend who has severe COPD but her doctor says oxygen won't help her it may make her more comfortable but it won't help her yet she doesn't lose her breath like I do going from the living room to the kitchen and I have a small house! I think my IPF is mild at the moment and don't understand why my symptoms seem to be worse then hers and she is severe. Am I just making this up in my mind that I get breathless if I don't have oxygen with such minimal exertion? I feel like I am a fraud and should just throw my oxygen out and get on with life. Also when doing tasks I seem to have to rest in between. I just can't zip thru my kitchen cleaning it. I take the dishes out of the dishwasher and then I need to rest. Then I rinse some dishes off and need to rest. Am I making this up? Blue Flyer Joyce 63 AZ IPF 11-08 Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.