I remember when I could do a lot of things that I am unable to do now. Unfortunately, that is only going to get worse as time goes on and my lungs get worse. It is a major mind trip when you want to do things but your body won’t let you or your mind won’t let you because it knows your body can’t. If that makes sense.
I now have some anxiety about doing things with not knowing if I can endure them. We went to Nashville for a couples weekend a few weeks back and I was concerned that I wouldn’t last. Luckily we didn’t try to close down the bars at night and actually had early nights in the big picture. hahaha.
So to say I’m scared of what the future holds is a true statement. I am nervous about doing things like going to concerts or sporting events with all the walking and climbing of stairs because me and stairs do not get along, especially big arenas. I want to do fun things but my anxiety gets to me. I hate it for my husband and friends because he/they deserve to go and have fun but I don’t want to slow them down. They say it doesn’t bother them but it is hard not to have that mindset when you are the sick person when thinking about the non sick people in our lives. You hate being a burden. Yes, I hear you loud and clear that I am not a burden but that doesn’t change what my mind feels. I remember when I could do all of those things relatively easy and keep up. I may be coughing through it but I could keep up.
We don’t want the people who love us to hurt or worry but it is inevitable and it sucks. Of course we want them to care for and love us but we don’t want to be the reason that their heart hurts. For instance when I get sick I know my husband hates it for the simple fact that there is nothing he can do to make me better and I hate that for him. It does show how much he loves me and I appreciate that. For that I try to be better than I am so that he doesn’t have to worry. Luckily he is medical in his Air Force history so he knows a lot and helps calm me down when I need it.
I guess what I’m trying to say is watching someone slowly die is hard to watch. What I mean by that is that CF is progressive, which means it will only get worse. Yes, I may hit plateaus but in due time I will get worse. Trust me, it’s no fun being the sick person with an incurable progressive disease knowing what is ahead of me. I may not know all of what is ahead of me health wise but I know it isn’t going to be all roses. That’s why we have gone the route of transplant with the hope that I will come through the surgery with flying colors when that time comes.
I have been battling my depression recently, more than usual. I have had these things on my mind so I decided to blog about them hoping that getting it off my chest would possibly help me because I am tired of being blah and having no motivation to do anything. Most days it’s just waiting for bed time because then I don’t have to think about things, well until I actually fall asleep.
I have post transplant friends that say “I remember when” in a conversation talking about CF and being sick and all that comes with it a lot and I don’t take it as a dig because they are enjoying the new lease on life. Sometimes it is hard to hear because it’s just a reminder of what I have to endure everyday and knowing my future. I have found that some people once they have their transplant lose contact with the CF community because they no longer have the same issues to deal with. I hope that when I have my transplant that I will always stay connected with the CF community and be an encouragement to them and help them with my knowledge of what they are going through since I have/will have been there. Man that took a left turn…hahaha.
I just hope the “I remember when” doesn’t consume me and I do what I can and I push myself to do things and not be scared to try. If I have to get handicapped tickets for things then that’s just what I’ll do in order to enjoy life. Easier said than done…haha.
I hope you all are having a blessed week so far. I hope that I can get out of this depression funk and accept the way my body is now. I have been walking at the mall or walking the dogs when it has been nice enough out. I’m trying to be the good patient.
Until next time…