Re: Respitory Therapist said: SLOW DOWN!

[Guest guest]

Beth- you are very right. I really don't understand. But she scared mewhen she said to not use multiple muscles at the same time. and she said I have to stop "running around". I don't understand why running around driving the car is so horrible. but she says when I park the cfar I have to walk in and walk around and to getto the car I have to walk there and open the door and I am using muscles driving. I mean she seems to thinhk I am a invalid. I am at a loss. I just don't understand why these things are happening to me. I really don't understand. I am however going to cut back a lot on what I do. I guess this holiday I will love my dogs and lie with them under a throw and watch movies on my tv....that can't be exerting myself too much! Joyce R

[Guest guest]

Joyce,

I know you are having difficulty understanding all this your limitations are because of your lung disease. They are not because you are in "such bad shape". I don't know whether you are in good shape or awful shape, it doesn't matter. Your lungs dictate that you must slow down. I'm glad your respiratory therapist told you all this. Maybe if you hear it from her and you hear it from us you'll start to believe it and take care of yourself.

The demands you are accustomed to making of your body are simply too much. You have to find a way to adjust your expectations of what you can do. If you don't you won't be able to do anything and none of us want that.

Hugs,

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-support Sent: Tue, December 22, 2009 7:04:25 PMSubject: Respitory Therapist said: SLOW DOWN!

I called the Respitory Therapist I saw to ask her some questions and she told me flat out! SLOW DOWN!!! She told me some interesting things but one of which was that if I didn't slow down I will have a heart attack and end up on a slab. She said is you walk 9 feet slowly and your heart rate is in the high 120's then what ever is causing it you have to really not do anything! She called me a go getter and a super woman and said that i am having a very hard time understanding my limitations but if I don't the PF won';t get me before my heart goes into defribulaion and I drop dead and end up on a slab. Oddly she said I shouldn't use two muscle groups at the same time=for example don't carry something and walk or walk and swing my arms.... How could I have gotten into such bad shape???? When I got home from the store today I took my 02 and my pulse and sitting down and resting for 15 minutes my 02 was 89 (and it's actually 5 points lower. That is what

my blood oxygen is)and my heartwas at 98. I sure don't understand why this is happening and what is doing this too me but it is scary. Joyce R AZ birds

[Guest guest]

Joyce-R,

Try not to spend a lot of time worrying about the why. I know you feel scared because you need to change your activity level, but you can do it and enjoy what you can do. Just follow the advice of your RT and relax and rest. You're not in "bad shape" but if we don't take care of ourselves, our bodies will tell us in different ways, like physically breaking down.

C_53_Familial IPF_5/09, Washington

HOPE doesn't disappoint!

To: Breathe-support Sent: Tue, December 22, 2009 4:04:25 PMSubject: Respitory Therapist said: SLOW DOWN!

I called the Respitory Therapist I saw to ask her some questions and she told me flat out! SLOW DOWN!!! She told me some interesting things but one of which was that if I didn't slow down I will have a heart attack and end up on a slab. She said is you walk 9 feet slowly and your heart rate is in the high 120's then what ever is causing it you have to really not do anything! She called me a go getter and a super woman and said that i am having a very hard time understanding my limitations but if I don't the PF won';t get me before my heart goes into defribulaion and I drop dead and end up on a slab. Oddly she said I shouldn't use two muscle groups at the same time=for example don't carry something and walk or walk and swing my arms.... How could I have gotten into such bad shape???? When I got home from the store today I took my 02 and my pulse and sitting down and resting for 15 minutes my 02 was 89 (and it's actually 5 points lower. That is what

my blood oxygen is)and my heartwas at 98. I sure don't understand why this is happening and what is doing this too me but it is scary. Joyce R AZ birds