Watchathon Week!

So, it’s been a rough time for me recently, if you’ve read any of the recent posts…the few I have made…you will know I’ve been sick, my dog had to be taken in to be put down, and all kinds of horrible shit.

CF life is terrible in and of itself, but when you get even one thing extra that adds pressure, stress, angst, pain, anything really that isn’t easy to deal with it gets really f#cked up. Everything becomes exponentially harder.

So, there are certain times when it isn’t as hard because something (an outside variable) makes stuff easier to disregard.

Well, this week is watch-a-thon week on demand, with X-Finity…I live in an area where the cable company I have really has a monopoly on the area. It sucks sometimes, but there are benefits, and I am currently in the middle of one of those benefits: “watch-a-thon week,” it basically opens up the channels like Starz, Showtime, etc. you can either watch shows that you don’t have access to unless you pay for the particular channel, or you can watch the movies on demand on those channels. It’s pretty cool, it lasts about a week, and it allows you to catch up or watch stuff you wouldn’t get to unless you pay for those premium channels, which I don’t…lol.

Well, that’s what I have been and will be doing for the next couple of days, and I will be watching a bunch of movies, and maybe some cool TV shows I don’t know yet, i’ll figure it out when I run out of movies I want to watch, if that happens.

Right now I am watching a movie called “Freaks of Nature” it’s like a mix between “Can’t Hardly Wait, Final Destination, and Twilight/Walking Dead”…lol. Pretty funny, and a crazy vampire/alien/zombie/human integration movie…nice!

Anyways, hope all is well with everyone, and have a good week!

CF Rundown (Cystic Fibrosis)

Here we are again, it’s 3:15 in the morning and I’m up, just had a pretty bad coughing spasm, and have been feeling real crappy. One of the things that most people don’t know about CF unless you have it, or have experienced it first-hand, is called CF rundown. It’s pretty self explanatory…so every so often we CFer’s get rundown from the constant state of being sick. From all of the coughing, the malnutrition, the over worked and underutilized muscles. All of this comes together in this horrible set of symptoms that is referred to as CF rundown.

Basically, it requires that we slow down, amp up the meds, sleep and eat as much as possible, and rest in-between. I know it seems like its an overkill of rest and refraining from activity and that true, it is. But, that’s the only way to get rid of this. Relax, eat, drink as much fluid as possible, don’t strain to do things, and don’t force yourself into activities that aren’t absolutely necessary.

The shitty part of rundown is there is no kind of way to tell how long it will last. It can last a couple of days, or a couple of months, that’s the part that really does a mind job on you, waking up everyday knowing you are going to have x,y,z problems is one thing. But, then adding on being super tired, feeling hot and cold simultaneously, and not being able to do the already paired down set of activities we have in our lives really is a bitch.

I remember back in college, when I got this I’d pop into the health center, get some antibiotics and some pain killers and be back at it, but when you have several months where you show up with symptom’s, and keep getting prescribed things like pain meds, it can cause real problems: physical dependence or even addiction, but that’s a whole different can of worms for another post. So, back to the health center, their job is to get you back into class asap without endangering other students health…so, the combo of antibiotics to kill infection, and pain meds to make the hectic life of a college student who isn’t feeling well manageable is really one of the best balances of safety and pushing it slightly. And 95% of the time that was all that was required. Mind you this was back in college, my health was in general better, and I wasn’t pushing 30.

Fast forward 10+ years, and here I am, its 330 am and I don’t have the ability to take pain meds to be able to stop coughing and fall asleep, I don’t have antibiotics right now, and since I frequently am on a set of antibiotics for a plethora of other reasons, the less I can be taking them the better.

So, things like rundown get dealt with by: eating more, drinking lots of fluids, sleeping as much as possible, taking extra ibuprofen, using showers to keep the shivers or sweats at bay, getting more fresh air than just the normal daily routine would involve, amping up the treatments, and any other little tricks that don’t involve adding a bunch of unnecessary meds onto an already pile of pills we consume in general, on a regular day.

It’s kind of funny with CF you learn little things over the years, I probably know more about meds than most of the doctors I see, and especially meds I have taken before, you have to. Also, how they interact with my body in particular. Every time I get prescribed something, before I will even consider putting it in my body, I do an insane amount of research, and find out everything I can about it, factual and anecdotal…including other people’s experience with said medicine, the side effects listed on the label, its interaction with certain foods or other meds, all of that comes into play. Then I will take it, but if a few days in I realize the pros don’t outweigh the cons I stop taking it, now this doesn’t include things like antibiotics because it’s not healthy to start antibiotics and then stop them. As, your body will start to build up a resistance to that kind of medicine, and since we need it to work as best it can we can’t afford to give it an edge by already having a bit of resistance to the strain of infection it’s trying to fight. It’s a very thin line you have to walk, and it is a delicate balance of knowledge, trust in the people around you, and knowing your body extremely well.

Dealing with Cystic Fibrosis, or other terminal, or even just long-term illnesses is a very volatile situation, it requires a lot of patience, and a strong positive mental outlook. If you don’t learn to develop those qualities you are really in for some serious battles both physically, but maybe even more so psychologically. It can do a number on the toughest of people and it is a fickle bitch, please excuse the language, as I’m pretty fed up…lol…ahhh! So, once again hopefully this gives you a bit of insight into CF, and a small look into the life, thoughts, and experiences of someone who fights daily just to breathe.

I appreciate you taking the time to read this, and if you know someone struggling reach out to them, it’s almost 4am and id give anything to have someone to talk to right now, but everyone I know is asleep. Having someone extend an olive branch to a person in my situation makes so much difference, it’s kind of unexplainable, at least in the vocabulary I know.

Anyways, that’s all I can think of right now, and I don’t feel like writing anymore, but hopefully something good is on TV. So…with that…goodnight!