It’s Sunday afternoon, as I sit in my room watching American Dad and playing some computer games…I decided it’s a good time to write a bit. This is one of those days that isn’t particularly good or bad, and sometimes those are the hardest days to handle. As feeling like crap is the norm I expect it to return, but I also feel good enough that I kind of want to go out and do something. Being that my finances are severely tight, I have opted to just stay in and watch some good TV, and now I’m writing this blog to explain this weird state of being to people who don’t understand, or to those who are in the same boat, and wish they could paddle away from this damn situation. It’s VERY rough to say the least…

So, most people are out shopping or running around doing holiday type stuff, enjoying free time, family time, or fun time. Sadly, I sit here waiting for the other shoe to drop…and it’s an extremely depressing way to pass time. My mind races, my thought’s go to dark places and the whole time I’m doing/using every “trick” or “body hack” I can think of to make things easier. I have a pretty good control over my emotions, I didn’t used to, but over the past 5-6 years I have developed a really great sense of what I actually feel, and how to handle myself physically even if my mind is exploding with an unwelcome sense whether it be depression, exhaustion, loneliness, or just boredom. It is rather strange what the human body can adapt to, I am a walking billboard for the strangeness a person can get used to, and I have to say it sucks!

It’s almost 4pm, this is one of those times where a normal person would say “I’m gonna go do something,” then they’d get out to go do something, whether be it shopping, seeing a movie, or just cruising around with a friend. I sit here, like I said earlier, waiting for the CF to rear its ugly head into my day, I know it will at some point, and all I can do is minimize the effect it has on me. I have gotten to a point where I have control over my angst and have developed the mental capacity to understand that is just the way my life is, Cystic Fibrosis is a progressive, degenerative disease it’s only going to get harder. So, I deal the best I can, but I have to admit this is the time of year I miss out on a lot of things I wish I could do, and it becomes extremely lonely…moreover, uncomfortable (aside from the physical discomfort I deal with from the actual CF) just an uneasy feeling. I guess I would define it the most accurately by saying it’s like the worst anticipation of the unknown you can imagine, however the unknown isn’t exactly unknown, being that I actually know what is coming. Having said that, even though I know (kind of) what is coming and how it will feel, the “unknown” for me is: at what intensity level will it hit me? How bad will it get today? What time will it interrupt whatever tasks I am doing to occupy my mind? Finally, and maybe the worst part of the anticipation is what if today is “The Day?” As CF is terminal, I never know when I’m going to wake up feeling ok, only to have that be the last time I awake…

This post is a bit darker than I intended when I commenced my writing, and I know that it is hard for some people to even think about things in this manner. With that being the case, I also need to say having CF (or any terminal illness) makes it easier to think about things like this because that’s my “normal,” it’s what I’ve been dealing with since I was 3, and it’s basically all I know. I have had to ponder the consequences of living a life with CF, and contemplating death from the first time I was told what my life expectancy was, or whatever age I was that I was able to comprehend things of that nature. It sucks pretty bad having that kind of thought process, but it has allowed me to get to a place where those thought’s don’t take me into tailspin of emotions I wouldn’t wish on my worst enemy. Yes, it’s hard to think about…yes, it sucks in a major way…yes, it isn’t what I would ideally like to be doing or thinking, but I am at peace with the fact that I am going to deal with this until I die.

So, to sum up I guess I would say today sucks in the best way possible…I am feeling ok right now, but at some point I will start to feel terrible, I know that and am at peace with it. I will deal with the agony of the symptoms of the Cystic Fibrosis as they come on, until then I am kind of in a state of limbo. I will do what I can to take advantage of the fact that I haven’t gotten to the worst part of my day yet by enjoying, as best I can, the time I have today where I still don’t feel like death is knocking at my door. I hope if you read this you don’t get put off by the tone, I am just being as genuinely open about this as I can be. If I can reach one person who feels the same, or doesn’t really understand how they feel, but knows it sucks, then I will have accomplished what I set out to do. As I was once that person, looking for something to explain the “why” of having to deal with such horrible things all of the time, looking for something to allow me to feel like I wasn’t the lone ranger, even for a split second…looking for someone who understood.

 

 

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