I now understand why my mom slept all the time near the end of her life. No I’m not saying I’m at the end, don’t worry. She would have a good day and be able to hang and do a bunch of things then the next day she would sleep pretty much all day. She may have even needed 2 days of recovery depending on what she had going on. I’m sure I have written about this before but the reason I am writing about it now is because we had a double date last night for dinner and the Dan + Shay concert. Before that I was able to go to a very good friends promotion ceremony which was about 2 hours long with the ceremony and the party after. My busy day started at about 12pm with getting ready and we got home around 11pm. I was so very tired when we got home that I wanted to just go to bed but that’s not possible, I have to do a breathing treatment first.
After my breathing treatment I hit the sack and was out and didn’t get out of bed until about 11am. I then got up and did a breathing treatment and had a bowl of cereal. I was still tired and worn out so I went back to bed around 1pm I think, maybe a little later. I didn’t get up until around 6pm, time enough for a breathing treatment and dinner. My loving husband checked on me a few times. I always feel bad sleeping the day away because it is time I could have with him. I am tired as I type and do my final breathing treatment before bed.
THIS is one of the most hated parts of CF progression for me. I remember being able to get up, do a treatment and head out to do whatever and be good for the whole day. I HATE my body most days because it doesn’t allow me to do what I want it to. I want to be able to get up and go to War-Mart and it not be a production and not get worn out from it.
People yesterday told me how good I looked. This is also hard because I “look healthy.” The inside is one ugly mess. I always say I try to look better than I feel. I guess I achieved my goal yesterday. haha. It helps that I have extra (a lot if you ask me) weight on me so it helps me look healthier than when I am skin and bones. The extra weight helps fight off infection because it give my body something to fight with. I wish I felt as good as I looked. Thanks you for noticing that I look good and understanding that it is not the truth for the inside.
All of this is why you may get a “no” or a “maybe” from me if you ask me to do something because I never know how I’m going to feel. Don’t take it personally because it’s not personal. It ticks me off that I can’t make plans like I want to. I am very much a planner, so the need to be spur of the moments was/is hard for me to adapt to but I think I’m doing ok with it. Now only if my friends had the same ability to be “spur of the moment” people with their busy working lives. hahaha
Until next time…