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.

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Your Weekend Plans…?

TGIF!! It’s Friday afternoon, and I love the feeling this day brings…it’s like a small holiday once a week, I’m weird I know, lol I’m glad I have the ability to laugh at myself though. So, yesterday I took a huge step outside of my comfort zone, and I posted a video on YouTube and blogged with a link to said video. Now I have 12 views, and a couple of new followers! I have to admit it scared me to put myself out there like that, but I did it, and am glad I did. As for me I’m going to start today, and use my weekend time to get a little more versed in the social media stuff I’ve been a little behind on. I’m going to update my Twitter, as it has been stagnant since its inception. I am probably going to look into Instagram, Pinterest, Tumblr, etc. to see what fits with my desired platform blueprints. Also, since my first video was kind of raw, and not very professional I am going to look into ways to better my recording process, and I think I will probably need a new camera as the one on my computer doesn’t seem to be very decent. If I had the money I’d just go right now and buy one, but ill have to figure something else out until I can swing that. I am super excited because I really feel like this is going to allow me to do what I want to do, and that is help people who feel like they’re alone, with nowhere to turn. It’s hard to put yourself out there not knowing what will become of the vulnerability you show, but so far it’s been worth it!!

Anyways, that is what I intend to do with my weekend, what about you? What are your plans? Going to a movie, party, or yummy restaurant…leave a comment and let me know. Also, I am going to do a social “mixer” at some point in the near future. I am not exactly sure how I am going to facilitate and accomplish this. However, I’ve got a couple ideas that will hopefully allow people to come together (probably virtually) and share some ideas and stories in real time. I will be trying out several new things on my site, blog, and YouTube channel so keep an eye out. Any ideas or suggestions are welcomed. Hopefully everyone had an ok week, but are ready to have a great weekend! Thanks for stopping by, it’s always very much appreciated.

CF Life tip of the day: Instead of using expensive box tissues, buy some cheap but soft rolls of toilet paper to keep near where you spend the majority of your time e.g. bed, car, desk, etc. That way you have something to cough into instead of your hand, tissues for your nose, and even a “napkin” in a pinch.

CF Life Body Hack # 1: Getting sore, uncomfortable, bored, or just not in a great mood? Go to an outside area where you can get some fresh air, give your entire body a good stretch. Now, starting at your feet flex then relax your muscles progressively moving upward all the way to your forehead, make sure your breathing is controlled and steady. You should notice immediate improvement in your mood, as well as physically being more comfortable.

 

Back to normal “hacking” my health.

It’s about 3:30 pm and I’m sitting here having just finished up some work, don’t really have anything else that’s super pressing to do today so I’m going to blog a bit. I want to start this blog post out by asking a couple of questions…anybody who so desires can respond. It would be appreciated so maybe I can tailor posts to a certain request for knowledge, experiences, information, etc.

So, after the holidays are over everyone has those couple of weeks where you’re stuck in-between being in a holiday type mood, and moving on to get back to “normal” life. At least that’s where I’ve been and may even still be a bit…since I love this time of year so much I tend to drag is out as long as I can. Being that it’s over however I have been having some weird stress and anxiety the past several days, and I’m not too sure why…? I woke up a couple days ago and the CF crap had weaseled its way back into my main thought process. It sucks, but with that there comes a bit of an ability to view things from a distant perspective. Meaning even though it sucks I can kind of step back and review how I am doing before, during, and after the holidays, and why. I’ve been waking up at 6-7am again as opposed to being able to sleep comfortably until 9-10am, I don’t like it but it gets me back into my regular routine. If I had my way society in general wouldn’t get moving until 10-11am and go until later in the day, but that’s just my personal preference.

Here are some of the things I’ve re-instituted into my daily “body/health hacks” some may be helpful to anyone and others may only be applicable to people who deal with terminal illnesses like Cystic Fibrosis, diabetes, Crohn’s, etc…so, body/health hacks: when I first wake up I cough like crazy so I keep two drinks on my bedside table, 1 is a bottle of water(a must) and the second varies, sometimes its tea, sometimes its coffee, so basically something with minimal sugar or a sugar amount I can control. The reasoning being that a bit of caffeine will open up closed airways, so when you wake up in the morning all congested and clogged up

So, my day may look nothing like yours, but these things work…so try them out. It helps more than you think to be able to just pull a snack out of your bag that isn’t junk food. Or, to have a drink to hydrate with, and then one to sip on as the day goes, again something healthy as well as cheap being that it isn’t a $5.00 Starbucks, or a drink from the 7/11. All of these things not only help physically, but also mentally it’s comforting to know I won’t get hungry in traffic and have to pull over with low blood sugar. Finally, it saves me some money, as I don’t have to stop at junk food stores to refuel. These are just a couple of the many things I employ in an attempt to keep my body at a functioning level, keep myself from being hungry/thirsty, and without braking the bank, which I do just keeping up with Dr.’s appointments. All in all it is very helpful, and I can post more of these little tricks or “hack’s” as they are so often referred to in pop culture…They may seem inconsequential to most but when just doing your day is a rough task any little bit of relief here and there is a godsend, and enormous edge in keeping your health up to par while going through life and trying to keep on keeping on. Hopefully this helps one person figure out something they didn’t previously think of, or didn’t try before. That is the whole point of my page, and my blog, I want to be able to provide relief in situations where I didn’t have any help, or even information to go on. Enjoy the rest of your day!