The Plunge…this sucks!

Well, I’ve kind of been waiting for this to happen for a few days since I’ve been naturally feeling not terrible, and have been enjoying watching some really good basketball games…I’ve been elated, enjoying the natural high of life. But…waiting for the other shoe to drop.

It just hit me like a ton of bricks, as I am sitting here watching some game recaps, I feel that nasty pit of the stomach feeling start to churn, it is angst, dread, fear, loneliness, just discomfort on a deep psychological level. The other side of the effect of waiting for the other shoe to drop type feeling, well it has dropped. And it is ripping my stomach apart as I try to control it.

I literally just made a post probably less than an hour ago, and I wasn’t in this mood. I know all people experience this kind of thing, just maybe not in this amplified of an impact. Having Cystic Fibrosis I am used to dealing with discomfort both physically and mentally, and I have a pretty well developed sense of how it is impacting me and how I can keep it in check. Having said that, I also have NO control sometimes, and this is one of those times.

I am sitting here at 12:30 am, I’m alone, and uncomfortable…in a terrible way. These are the times I anticipate with fear, almost more than anything else. The feeling of dread fills my mind, and my stomach in trying to rip its way out of my body to find an escape.

I usually wouldn’t share this type of stuff, I wasn’t raised to complain, but I’m trying to be as real as possible and make this site/blog raw, real, and not sugar coated…I was raised well, and raised with the idea that you don’t complain unless you need to, “don’t cry wolf” I guess would be the best way to describe my discipline in this area. There are times I need help, physically, and even mentally…but, if I always say how crappy I feel I would be complaining almost constantly and more so when it gets bad, but this is one of those times. So,where I usually just suffer in silence as to not create stress and tension among the ones I love, I am using this as my outlet. Trying to share my pain in an attempt to understand it better myself, but also to show how much of an impact something like CF has one people aside from the physical affects.

Obviously, this will subside at some point…but I don’t know when. So, until then I will try to distract myself with meditation, video games, TV, anything to take my mind off of this for just enough time for it to fall to the back burner in my already scrambled brain. As I said I don’t usually share this stuff because it Is my shit to deal with, I am trying to be more open, and hopefully shed some light on what impact an invisible illness has on the person, like I said, aside from the physical impact.

So, with that I am off to distract myself, I apologize if this post seems to just be a long winded complaint. That wasn’t really my intention, but I think it was the outcome.

Feeling Powerless

It’s 1:15am and I’m unable to sleep, also I haven’t posted anything today…so, I wanted to get this out while it was fresh on my mind…

The past few days I have been feeling relatively good, and haven’t had too many unexpected issues…until tonight.

So, a few hours ago, after I had dinner I am sitting around on Twitter, and Facebook, etc. as well as watching some TV, American dad, one of my favorite show. When all of a sudden I got extremely sick to my stomach…”here we go” I thought to myself…as I made my way to the bathroom.

After about 30 minutes of throwing up, I took a quick rinse off in a hot shower, to bring myself back to life, but also to clean up and get ready to go lay down and relax my tensed up abdomen. As well as my insanely horrible headache…

As I am sitting in bed I am going through some emails, and some other projects I have been trying to put together lately…and it kind of hit me in a weird way that the impact I am having on making my health better is not what I want it to be, which made me start down the “dark thought path.” Which is one of the worst places a person with a terminal illness can go to psychologically, it is a dangerous rabbit hole.

Well, I couldn’t stop it and several things came to mind…

  1. I  want to be back to my old self again…super healthy and only sick on the rare occasion…is it possible?
  2. I also want to reach more people like myself, who maybe sitting up at night alone, scared, with thoughts racing to the darkest places a mind can take you.
  3. I have limited resources to accomplish (1 & 2)… so, how do I do it in any kind of expedited fashion? I don’t know…
  4. Life is extremely short for all people but, with a terminal illness any day could be my last, or could be the last good day I’ll ever have.

As you can see these are not things one wants to think about, especially when feeling sick physically already, and sitting up alone, at close to midnight.

So, I started to compile a list of things I want to do, something I have done many times before, but in a more “dreamy” fashion. This list was REAL, it was harsh, it was definitive. Tomorrow is the first day I am going to start attempting to conquer this list, and I know I cant do it alone, so one more time I am asking for help…

If you know ANYONE who has the ability to facilitate introductions to leaders in the business community, please leave a comment, and let me know. I am trying to leave something behind to the people like me, who may be able to benefit from the struggles I have and am going through. Maybe set up a foundation, or even some kind of social network dedicated to allowing people like myself to communicate with each other in REAL TIME..but, not just like a Twitter, or Facebook kind of thing, something a bit more open. A place where strangers can come on anonymously if that is what they desire, chat with someone for a little while, or a group of people, and then leave. No log in, no required email, just a “virtual coffee shop” so to speak, or maybe even closer to a virtual “bar/pub.”

I realize people always need help, and will always need help, and I can’t fix all of that…but, if I can create something that at the very least allows CFer’s or anyone with a terminal, or long-term illness to have someone to reach out to. Being that in times like the one I’m in right now, that would be an enormous burden off of my shoulder’s, I want to get that going ASAP. And if I can do that in a day, week, or month…I want to do it.

That is asking a lot, I know. But, I don’t have the luxury of waiting patiently anymore…and that hit me tonight like a ton of bricks, so I am going to start reaching out to everyone I know, and if you would like to be a part of this or know someone who can help, in any way, I would deeply appreciate it.

With that, as it is a lot, I will end this post…hopefully I can stir something up, because I AM going to get something going, and the more people I can get involved the better. This feeling of powerlessness is a horrible one, and I want to prevent other people from having this feeling consume them like it does me at times.

Goodnight, and thank you for reading…