What is “normal?” Normal is a relative term. My normal is not someone else’s normal. My normal is what I know. Now with that said you might ask where I’m going with this. Well let me fill you in…haha.
My normal consists of coughing, lung cookies (sputum), breathing treatments, vest treatments, lots of pills, chest port, IV antibiotics, club med stays (hospital stays), shortness of breathe, wheezing, being worn out among other things. I am not able to just get up and go and that is probably one of the most frustrating things. The first thing I do in the morning is a treatment. I am almost worthless until I do a treatment. I know some CFers are able to just carry on and cough but that annoys me (for myself). I am unable mentally to just continue to cough if I know that a treatment will help. I get frustrated with myself when I am coughing a lot. I don’t realize how much I am coughing until I hear myself on video/recording or until someone comments on my cough. Usually it is my husband who comments and asks how I’m feeling. He usually knows when I’m getting sick before I realize it by my increased cough.
I wish I could just roll out of bed and head out of the house to run errands. That is not possible. I have to plan at least 25 minutes of treatment time at a minimum on top of normal getting ready (shower, hair, etc.) time. Oh yeah, add in time to take morning meds (pills) that require me eating food. Right now we are in an apartment so I have to get up do a treatment, take pills, take the dogs out and then get ready before even walking out the door to the car. To say that I would appreciate being able to just “get up and go” is an understatement.
Now comes times that I have to stop what I’m doing because I am coughing, short of breath or worn out. I have a travel nebulizer so that helps so that I can do treatments on the go. Puff inhalers don’t open up my lungs like a good ol fashioned nebulized treatment does which takes much more time.
I do a treatment right before going out or leaving the house in hopes that it will last me the whole time I am out. There have been plenty of times that I have had to go to the car to do a treatment in the middle of an outing. I feel like a looser having to say excuse me while I go “smoke my pipe.” Sometimes it is much easier to just stay home and not have to deal with coughing fits and people staring at you when those coughing fits happen. Holding coughs in doesn’t work, it makes it worse. There is the typical CF “clearing your throat” type cough trying to ward off a cough when you are around people. Sometimes it just gets draining to keep doing that over and over again just so that people won’t stare at you during a coughing fit but then they stare because you are constantly clearing your throat. I have had people say, “did you get it?” in an “I’m annoyed by your cough thing” tone when I kept doing little clearing my throat type coughs. My response was, “nope, I’m sure I’ll be doing this for quite some time.”
It’s hard looking healthy and having a cough all the time. People automatically think you have some crazy sickness that has been going around or like you are deathly contagious. Therefore we, I will speak for myself, I don’t like being around people when I am having a bad breathing day to save myself the stares and comments.
Your normal is probably getting up putting on fresh clothes, swiping on some deodorant, brushing your teeth, brush your hair or put a hat on then grab your keys and out the door. I envy you. I wish I could do that.
I don’t say these things to make you feel bad for your good health in comparison to my no so good health. I say them for you to be thankful for the health you have and not to take it for granted. Don’t feel bad for feeling good around me. Also don’t feel bad when you feel sick like you can’t complain for feeling bad because of what I deal with everyday. Your feeling bad is valid and you deserve to complain when you don’t feel good. I just have the luxury of being an expert on the feeling bad…haha. I take the good days and run with them and do all that I can because I know that a bad day is probably around the corner.
With all that said, I am thankful for the health I have, no matter how crappy it may be. There are plenty of people who are worse off than me and I make the best of what I have. I am thankful I have made it this far and I will continue to push forward.