Once again I have fallen off the radar in some aspects as I do when I get sick. It is hard for me not to fall off the radar when I’ sick. I try not to because I know that it worries some. With that said, I figured I would try to paint a picture of what being sick looks like for me.
First of all, being sick drains me of all energy. The infection that takes up camp in my lungs is a constant battle. It is never eradicated, it is just a matter of how active it is and if it is causing me problems. If we treated me with antibiotics every time I cultured something I would never be off of IVs. We only treat when I am showing symptoms of an active infection such as increased cough, increased sputum production, change in sputum color (darker/brighter=more infection), sleeping more, get worn out easier, short of breath, wheezing, chest tightness, etc.
There are times the symptoms just sneak up on me and other times it’s like hitting a brick wall. Quite often my husband notices my symptoms before I do. That is probably because I am stubborn and don’t like to admit I’m getting sick at times also that I live in my body everyday which means I don’t notice when it is subtle because I just adapt.
Here is what my days look like right now. 5:30am: alarm goes off for IVs. I hook up IVs, set a timer and go back to sleep but that is only if I am not coughing enough to need a treatment. 6:15am: Do a breathing treatment. 6:30am: I have to make sure the kid is up and out of bed for school (30 min process). 6:55am: Timer goes off, IVs are done. Flush off and go back to sleep. I sleep until I can’t sleep anymore…haha. I have been getting out of bed around 10:30am-11:00am. Breathing treatment time again when I get out of bed. 12:30pm-1:00pm: Hook up IVs again for another hour and 25 min. 3:00pm: Breathing treatment time yet again. 6:00pm: Breathing treatment again. 9:00pm: IV time again. 10:00pm: Final breathing treatment of the day…only if I don’t wake up in the middle of the night needing one. I sleep and rest as much as I can hoping to stock pile energy for upcoming things so that I have the energy to do them. It is very hard for me to be lazy. It makes me feel like I am worthless and am not doing my part. My husband is awesome at doing everything so I have nothing to worry about but that doesn’t mean I don’t feel bad about it.
In between all of that I cough a lot and cough up a lot, I watch TV, do computer work, sleep if I can and eat since keeping my calories up is very important in order to fight infection. When I am not feeling good, eating is a chore. On top of that I am trying to avoid a bowel blockage right now which makes me feel full so I can’t eat as much. Tomorrow is one week of IVs therefore I have labs tomorrow. I will see how I am feeling the middle of the week next week to determine if I feel like these antibiotics are working or if we need a change.
It is hard for me to portray how sick I am and not make it seem like I am looking for sympathy or making things up. With that said, this is my normal, this is all I have known. People see me out and about after I have done a breathing treatment and I’m breathing decent so they may not realize how I really feel because I look fine. CF is very deceiving in that way. I’m skinny and look fine but inside there is infection reeking havoc on my lungs. I get worn out pretty easy when I’m not feeling good. The older I get the longer it takes me to bounce back. I haven’t been bouncing back like I used to this past year. I am trying to figure out where I am at lung baseline wise and to be ok with it.
So now back to my first sentence of this post. It is hard not to fall off the radar when I am so busy trying to get better. I try my best to respond to everyone when they text or IM me on fFacebook If you want to check up on me feel free to text, email or IM me. That means the world to me. Don’t worry about saying the wrong thing, just checking in with me means a lot. Thank you for all the “get better” and “feel better” messages. My goal is to feel better than I do now and I’m working on it. I will never be “better” since CF is a progressive disease BUT I will have good days and feeling better days and I will take those every chance I can and make the most of them. When it comes to my life, CF aside, I still have to do all the normal things a wife and bonus mom does like cleaning, laundry, football pick ups and drop offs, dog appointments, grocery shopping, running errands, stuff on base for my husbands work, Clever Container work, etc.
Thank you for checking in on me and all your prayers.
Until next time…