What to do when you are woken up and you can’t get back to sleep….you get up and blog about what is on your mind. Friends and family have been on my heart and mind for a while. The sicker that I get the more I think about them and what they may be feeling. Family is “stuck” with me but that doesn’t mean they have to deal or even claim my CF. They can love me from afar and still be my family even if they don’t want to acknowledge my CF or even remember. It is easy to ‘forget’ that I have anything since we are states away from one another and we don’t see each other daily or even weekly or monthly, sometimes going longer without talking to each other as well.
You would think that family would have your back no matter what but that is not always the case. Sometimes they are the ones who are most scared and stay the farthest away so they don’t have to handle the CF side. I’m not sure if it is because they are scared or don’t want to get close so that it doesn’t hurt as much when I die or what.
I make friends pretty easy. With that said, I also seem to lose friends just as easy whether it is because of their fear of CF and loosing me at some point, which is closer now that I am progressing (as CF does) or I did something to upset them or hurt them. There are also the friends that phase you out because you can’t keep up with what others are doing. An Example would be a group of friends want to go hiking and we don’t get asked because I can’t do it, even though my husband can. I totally understand it but it doesn’t mean that it doesn’t affect me. It hurts my heart more because it is the reality smacking me in my face that CF is getting in the way of everyday things. It is hard knowing you are not asked to do things because I can’t do them or I can’t last all day like you need to be able to, like I used to be able to. Anything that takes a lot of walking or even just a lot of time can wear me out. For instance, my friend was just here to visit and we went to paint pottery, then went to a little boutique, then went by the grocery store and then finally home and I was ready for a nap and I needed rest the next day too. My husband and I went for brunch, then for my weekly lab draw, then by a flooring store by then I was ready for a nap but I had to do my IV dose first….then it was nap time for a good 2 hours. My body just gets so worn out so easy which is what makes me cry because I just want to be “normal” and do “normal” things like everyone else, including my friends. I may not look interested in something but 9 times out of 10 I am ready to lay down and rest because my body is cussing at me telling me to stop and rest. I can have a full day of stuff and then have to sleep the majority of 2-3 days to rejuvenate. I understand now why my mom did this and I gave her a hard time about it because it meant I didn’t get to talk to her when she was sleeping. Maybe I’m reaping what I sewed. Ugh. It’s just really hard to endure this life with CF at times. Many times I want to go to sleep and wake up all better. I know that isn’t going to happen but a girl can hope. hahaha
It is hard to swallow but it is the truth and that just makes it that much more hard to take. With all that said, I see friends phase out because I can’t do what I used to and in all of this, it’s my husband that suffers because he is able-bodied and can do all the things I can’t. I feel bad for him and I tell him that often. He tells me it is no big deal and he doesn’t care, it’s their loss. I have one hell of a supportive husband. He amazes me everyday with how much he loves me and will do whatever it takes to make me happy and to push through. His primary job in the Air Force is a medic so all the medical stuff doesn’t bother him, me wearing the oxygen in public doesn’t bother him.
I just have noticed over time people have distanced themselves from me/us and I can only assume it is the CF because besides that we are pretty cool people. It’s just these stupid CF genes and the progression that has changed things and I HATE IT!!! I never imagined that I would actually have lung functions in the 30%. I mean I know it was inevitable but it feels like it came on quick. It also seems with the progression/decline once you hit a certain point it seems to go faster. Although I have basically stayed steady for a year in the big picture, not counting all the ups and downs throughout the year.
I have a girls trip scheduled in May and I’m nervous that I won’t be able to handle it. It’s 5 days and I want to be able to enjoy all of it. I will try my best but the ladies I’m going with know that if Shannon needs a nap, it’s nap time. I don’t want any nap times because I’m going to the beach y’all! Or nap time will be on the beach or by the pool. I can’t thank the person who is making this trip happen for me. It is much-needed and I thank you for that very much!!!
I guess the reason for this post is to say that I understand how scary being my friend can be. The thought of losing me sucks. Just think about the other side of that, I hate thinking about losing all of you as well. I don’t want to leave and leave anyone behind. I want to live forever. I especially don’t want to leave my husband behind. I don’t want him to have to be alone. I just hope that I have left a lasting impression and good memories in your hearts and mind of me.
Don’t worry I’m not planning on dying anytime soon. I plan on pushing through even though it sucks big time at times.
Until next time…