Progression…may as well be a curse word

(Kind of a ramble…sorry)  It is day 11 of IV antibiotics.  I felt horrible over Thanksgiving and the weekend.  My husband was sick last Monday and Tuesday as well.  We were no fun last week, that’s for sure.  We had Thanksgiving lunch in our PJs and watched Netflix and football.  My husband is back to his healthy self, thank goodness.  When my husband came up sick, we thought it best to cancel my sisters trip here for the holiday.  We didn’t need to subject my sister, nieces and nephew to all the germs in our house.  We sure missed having them here for the few days.  The worst part is hearing that my oldest niece was crying and upset because she couldn’t come see aunt Shannon.  That broke my heart.  Of course, I am now thinking of when we can get a visit arranged ASAP.  She said she wants to come here for her birthday.  I agreed that was a great idea!  Spring break in Tennessee!!  Whoo hoo!!!

It never fails, I feel worse before feeling improvement, even if it is a slight improvement.  I have had quite a few “I hate CF” days lately.  With that said, I believe progression is winning now.  What I mean by that is, it seems that I can no longer “bounce back” to where I was before getting sick.  It sometimes is hard to tell when I’m sick and not just having a “bad CF day.”

When my lung function was in the 50’s and above, it seemed I was able to bounce back to the baseline that I had established at the time and hang out there for awhile before the next exacerbation.  Now that I just wrote that, I feel like I skipped the 60%’s and upper 50%’s somehow.  hahaha  As I have progressed, the baseline has obviously gone down as well.  It seems, I can’t find a happy medium and stay there.  It seems like my FEV1 is all over the place, up and down.  At the moment my lung function is somewhere between 30% and 36% (latest highest) on my most recent tests.

Now onto that word “progression.”  Cystic Fibrosis is progressive, thankfully it is usually a slow progression so our bodies have time to adapt to the lower lung function and other things that are involved in the disease process.  When your lung function is in the 70%’s and above you don’t really think about progression because you feel good (for the most part).  Then when it starts to decline, it can seem to happen rather rapidly, I speak for myself on that one.  It seems that when I hit the low 50%’s it just kept dropping and dropping.  I never thought I would see 30% this soon in my life.  I thought I had years before I would progress that far and be talking transplant.  It is a shot to the ego for sure.  You think you can fight anything and then you are hit with the realization that your body missed the memo and is weak.

You figure out what you can and cannot do anymore which is a hit to your independence.  Something as simple as mowing the yard…nope can’t do that anymore, do house chores…only on a good day and you still have to take lots of breaks.  Heck something as simple as grocery shopping wears me out and I have to take a break or even a nap to recoup.  It is hard to accept that your body is failing you.

We went to a friends house for dinner and I was tired and worn out after being there for about 2.5-3 hours and was ready to go home to rest.  I hate that.  I hate having to limit what I do to conserve my energy for other things that need to be done.  I can’t last as long as I used to for a days activities/errands/chores/etc.  I hate CF for making me miss things in life and for making others miss things as well.  My husband always says that he knew what he was getting into when we married but that doesn’t make me not feel bad for being sick and limiting what WE can do.  I will push myself as much as I can to be able to do the things I want to do.  By doing so, I run the risk of getting sicker quicker.  I don’t want to miss out on things.  Progression is a hard pill to swallow.

Until next time…

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