another late night, or early morning

Well, its almost 4:45am and I’m still awake. I dozed for a bit but my sleeping schedule has been extremely strange of late. I sleep a few hours and am awake for several, rinse and repeat…it sucks.

I have been in a very peculiar situation for the past couple of years, in that I have a better control and understanding of what my life with CF is going to look like as I get older, but it also changes slightly everyday, no days are completely predictable of even able to be planned for and it is pressuring me to figure out how to make this situation work to my benefit, or at least be able to benefit while dealing with my situation. Which is very damn hard, and not pleasant at all!

I just wrote my first blog for a few months a couple of days ago, and got a decent number of people reading It as well as a few new followers which is always a nice surprise. But, to be honest, I realize everyday more and more how much different my life is going to be than any kind of “normal” I had ever pictured as a kid and it is a bummer to say the least.

The only options I really have are “outside the box” type things, since regular places of employment either can’t accommodate my schedule, or I accidentally cough during the interview, lol…in which case I get extremely strange, albeit concerned looks, followed by: “are you ok?” or “do you cough like that all the time?” at which point I have to explain in detail what Cystic Fibrosis is, and that is isn’t contagious…and then the obligatory “thank you for coming in, we’ll let you know…” Which never happens oddly enough. I get it…I sound like someone who has been smoking since they were 2 and is probably gonna keel over the second I stand up out of the chair, haha.

Anyway, enough ranting for one day.

Ill be getting back to my daily life/body hacks posts soon, I actually have quite a few stocked up, and hopefully the tone will be a little more upbeat. So, thank you for reading and please know I welcome any questions or comments, or even suggestion…about anything. Hope everyone has a great rest of the week! Appreciate you stopping by…

-Will

Cystic Fibrosis Late Night

Damn, I just had a late night “CF Attack,” these things suck! So, it’s 1:30 A.M., I haven’t been asleep but maybe 30-45 minutes, and boom I wake up coughing really hardcore…so much I ended up in the bathroom throwing up. Well, after I finish throwing up my stomach is in knots, I wait in the bathroom for a bit just in case, and then take a quick shower so I go back to bed. Well, now I’m laying in bed wrapped up in a bathrobe, and towel…but, I’m freezing my ass off because it dropped down so cold tonight, especially being that this afternoon was like 70º, this sucks badly. Also, I’m still coughing, and since I can’t go back to sleep like this I’ll probably be up for the next few hours being nauseous, cold, sore, with tense abdominals, and a horribly tight chest …oh yeah, don’t forget the heaving headache.

Lol, I know, as ridiculous as it sounds to deal with this is pretty commonplace. I’d say this happens at least once a day, sometimes I can go a few days without one, but then some days it happens all day long. Those are my hellish CF day’s…spent in the bedroom, or bathroom. Moreover, I usually can only consume Chocolate Boost’s, and yogurt on those days, as that is all my stomach will allow. But, now I’ve got to get my appetite up enough to eat something before I try to go back to sleep…yay…the fun of CF (sarcasm), lol. Sorry, if I don’t laugh at my problems I’d be a basket case!

I wanted to share this with y’all in real time, just to give you a better glimpse into the daily CF symptom’s forced upon us, and the toll it takes on our body. Everyone who has CF knows exactly what I am feeling like right now, and I hate that. Anyway, I am gonna try to  eat a yogurt, or something, and watch some on demand shows…maybe a movie. So, I say Goodnight to y’all, and if you’re reading this I appreciate it. If you know someone with Cystic Fibrosis reach out to them, if you’re dealing with CF it’s comforting sometimes just having that friend you can call to shoot the breeze with, someone to pull you out of the messed up head state instances like tonight throw you into so violently.