Forum Replies Created

  • sandra-koenig

    Member
    May 5, 2019 at 12:31 pm in reply to: Different Types of Fatigue for Patients with PF.

    So happy you are touching on this topic. Seems like the start of Spring that everything has changed for me. The coughing jags are back and the extreme fatigue has set in. I can get 8 hours of sleep and by 1:00 in the afternoon I take a two hour nap. If I do anything physical I’m in bed for the night @9:00 p.m.  I feel more comfortable laying down anymore than sitting. We are leaving for a vacation for Prague in a week and I’m a bit scared that I’ll be exhausted everyday. I’ll have my oxygen but don’t know what will happen when I “Hit the Wall”. This means I need to sleep. We have limited our tours to basically one with another just being a hop on hop off bus. Any suggestions? Thanks.

    Sandy

  • sandra-koenig

    Member
    August 23, 2018 at 10:06 am in reply to: Tips to Settling Your Mind as a Patient with Pulmonary Fibrosis

    For me this works. I grab my iPad and play games. Usually they are the video games such as casino reels. There is something about the repetitious reels spinning that makes me nod off. It’s mindless play and as soon as I start to feel like I’m about to nod off. I put my iPad away, turn off the light, connect to my cpap and oxygen and it’s nighty-nite.

  • sandra-koenig

    Member
    July 3, 2018 at 11:41 am in reply to: Lung Flush: Ever Tried It?

    Found this on Amazon. They have a lot of reviews:

    LUNG FLUSH – 500ml https://www.amazon.com/dp/B00CORLP8S/ref=cm_sw_r_cp_api_7q7oBbFJVRWH9

  • There are days when you want to completely shut down. My family and friends see me smiling, laughing, doing everyday normal things, and I look very well on the outside. On the days that the coughing jags are too much, I get down. There is no handbook for living with IPF nor is there one for our families and caregivers. You don’t want to burden your kids or friends with how you are. It’s always a mixed bag of emotions. You keep telling yourself not to feel sorry for yourself, buck up as others are worse than you. I will admit when I am at my lowest I feel, because I still look normal and act normal, that those closest to me really aren’t concerned. I reach out to them but get nothing. I know for myself and my own thoughts, that I must keep being positive as no one wants to be around someone with a chronic illness. I think that is the only way for me to cope.  What really bothers me is I have become an introvert. I have immersed myself in my one hobby where I feel in total control. No one is making demands to tell me that I can’t do something, or wear your oxygen, or in a social setting where I could start coughing and have people stare.  So if you are asking what is the one thing that helps me, it’s not relationships as much anymore, it’s being alone doing what I can control.