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

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It’s Been a While…

So, I haven’t posted anything to my site in a while, and sadly it was unable to be avoided. That’s one of the shittiest parts about CF if you get sick or rundown, there’s no toughing through it, you just have to endure…until its run its course.

Well, for me the past several months have absolutely SUCKED. I have had one problem after another, and rundown at its worst. So, I’ve been biding my time, and recovering as best I could.

While I couldn’t really do anything physical or even much of anything, I have been thinking about EVERYTHING a lot…and I think that’s one of the things about CF that’s strange. I’ve been told many times over my life that I have an “old soul.” And I’m guessing most CFer’s have as well. I think it’s a given when you have so much time to contemplate EVERYTHING. It forces you to “age, or grow up” faster than the average person.

Throughout my while life I’ve had older friends, I’ve dated people who are usually older than I am. And not purposefully…but, more out of a desire to have someone I can relate to better, they just so happen to be older.

So, being that the last few months have been difficult, I’ve been trying to figure out a way to accommodate life around being sick, and its not easy. I have however discovered a few things that may make it easier as I get older, if I get “older.” (not trying to be morbid, just realistic).

The Best way I can describe what I’ve been thinking about is simplicity, I need to develop my life around a simple set of needs, wants, belongings, activities, etc..

So, I have decided I want to look into the “Tiny House” movement, and find a way to work in some sort of field where I can do most of my work from home, it will probably be the only way I keep a semi-normal life…

Anyway, I have been sleeping very little and am trying to get this post up as a re-entrance into my posting schedule, as I’ve been out of the loop for so long now.

For that I do apologize, I wish it wasn’t this way, but it is…for now at least. So, to those who have read and posted in my absence I appreciate you greatly, and any new viewers I thank you for taking the time. it means a lot to me to be able to reach even the small number that I do.

Hopefully everyone has had a good summer, and enjoys the season change as much as I do…but, for now, have a good rest of the week and I’ll be posting more frequently now, hope you enjoy. Thanks again for stopping by!

Fellow CFer’s…breathe strong! And stay healthy!

The Return…

So, it has been a pretty long time since I’ve posted anything, I haven’t been doing too well health wise, but trying to keep my spirits up.

I had some really bad CF rundown, and then a week ago I had a broken tooth extracted…that’s 3 now in less than 2 years, ughhh!

But, I don’t want to let this blog go stagnant, however I have to admit it has been low on my list of priorities, especially being in pain and not being able to take pain medicine…I don’t know if I’ve mentioned this before, but I have had a problem with pain meds in the past, doctors will fuck you up if you’re not careful…

Anyways, I’m doing a good bit better now, still not totally healed up, but on my way for sure…hopefully!?

After my Mollie girl left us, I had a pretty rough couple of weeks, then an extraction and now I’m finally starting to come out the other side, but its a bitch to say the least.

However, I am a strong willed person and I wont let things defeat me anymore, besides killing me I’m not gonna stop. So, good…but, kind of morbid I know, lol…

Well, I just wanted to get back into the swing of things and get y’all updated on my situation…im not dead…lol! I hope everyone has had a good spring break, Easter, or anything you’ve been up to really…

And finally, I will be posting regularly again, and am actually thinking about upgrading my site subscription for some different benefits and more personalization, maybe starting to branch out a bit and see how it goes…so wish me luck!

Thanks for reading and hope everyone is doing well!

– Will

 

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!

Stay Positive

So, lately I’ve been having a rough time both physically with the Cystic Fibrosis, and also a little bit mentally.

Physically, I’ve been having a rough time with the allergy season, It has sapped my energy, and made my face itchy, watery, and red…lol…it sucks…

Mentally, I’m having a bit of trouble, I’m alone a lot and I’m struggling to figure out what to do with my downtime, especially when I don’t have energy to do shit…

Making yourself do things when you don’t feel good is one thing, but when you feel extra shitty, its damn near impossible, and when moving is taxing it takes it to a whole new level.

I see and hear about what people are doing and it bums me out…I try my hardest to stay positive, which is very hard to do, and 5 years ago I would’ve had a serious breakdown by now, probably gone on a bender and paid for it for several months afterwards. Now, I have gotten my shit together since then, but mentally it is never going to be easy to go through life with CF.

I am always going to have to be strong mentally, not being rock solid will lead to my demise, and not metaphorically, but literally…it definitely takes a toll on you knowing things will NEVER get easier, in fact they’ll only get harder.

It is a mind f#ck and then some…but, I am strong, and I will stay positive, and I will make it…

I have made the resolve of my inner strength being solid, I have an iron will, and it cant be broken. Maybe temporarily damaged, but nothing will ever break me totally again, ever. To tell the truth knowing that is the only thing that keeps me going…is that I wont break, life will have to get rid of me to break me, and even then I hope to leave behind a legacy that outlasts my time here physically.

With that I’m gonna go listen to some rap, and get in the mood to dominate when I wake up tomorrow!! Do what you gotta do…

 

Been Gone…

I haven’t made a post in a few days, been having a rough time CF stuff. But, I did want to make a post and throw it up…

I have noticed something lately that I don’t really know how to approach but ill try.

So, I don’t have nearly as many friends as I used to, I have acquaintances, and I have a few close friends. However, it is very hard to keep friends when you constantly have to disappear for several days at a time to tend to your health and physical ailments.

I have slowly lost fiends over the years for many different reasons some of which were my choice, some weren’t, some were ridiculous reasons, but then there’s those people who juts kind of fade away not for any particular reason. Those I think are the hardest to come to terms with. I was going through my phone the other day trying to clear out some old unused contacts and I noticed I was deleting a lot of “old friends” numbers…

It is something we all come to terms with when we start getting older people drift apart…its unavoidable. But, that doesn’t mean it makes it any easier to do or even accept.

Anyways, just wanted to throw it out there, if you have an old friend and you haven’t talked to them in a while, reach out. It is something we all need to do more of. We allow social media to kind of fill in that spot but really how many close fiends do you still have that you have had since say college? Its drastic how many people are out of my life that I never thought would be.

Getting Pumped Up!

So, I just grabbed a quick pick me up shower, since I’ve been tensed up all day watching these basketball games!

My bracket has held up for the most part, however I am a very impatient person as ive mentioned previously, so I always pause live TV and let it run 1.5 hours ahead so I can fast forward through commercials, in this case I can fast forward through commercials but also half-time, and media timeouts…if you’re not watching Duke is playing right now against South Carolina, and I’ve got Duke taking it so I am about to un-pause live TV and watch the second half…lol.

Anyways, like I said I paused live TV so I have to avoid social media for the next 30+ minutes until this games has played out…in my time.  Being stoked as I am I’ve been yelling at the TV and jumping up and down all day so I needed a hot shower to relax my muscles…

But, the time has come I am gonna go (hopefully) watch Duke finish this out and move on to the next round…hopefully everyone had a great weekend full of great NCAA Basketball!

Thanks for reading! Have a good week!

Feeling better!

So, if you’re following any of my posts you know I had a small breakdown just a day ago…well, like I said in that post they don’t last too long  and I already feel a good bit better.

But, it did a number on me that day, and night…so much so that I had to dip into my reserve of anxiety meds which I don’t like to take a lot for that particular reason, when I need them I NEED them to work…lol. and the less you take them the better they work when you need them.

With something like Cystic Fibrosis this kind of thing is unavoidable, it happens incrementally thought the week, you have ups and downs, but some days are literally just hell on earth type days, that one was falling into that category for sure!

Anyways, I handled it as best I could, and shared it with y’all to show you how easily it is to go from “good” to “bad” with something like CF and not in a physical way (well yes physically) but that time more so mentally…So, I took my meds, meditated, then hooked up to some video games to blow some steam off…it worked, by the time late night/early morning rolled around I was able to sleep a bit, and today am doing much better!

So, with that I am going to go watch some basketball, as Northwestern made history today making it into and then winning their first NCAA tournament, something 78 years in the making. But, that and a couple of other games totally screwed my bracket up…oh well, that’s “March Madness” for you…lol.

Hopefully everyone has a good rest of the week, and if you’re watching these games have as much fun as I do getting into them!

 

 

 

Bracket has held up…so far.

So, it’s March Madness and they call it that for a reason, a lot of strange occurrences happen…not actually strange, but different than what the “on paper” outlook says about how things will go…

Anyways, I filled out my bracket two nights ago I think, and as you’re filling it out you get little “hints” from the organization with which you fill out the bracket about who should win, or who has better odds of winning. However, if you’ve ever watched the NCAA tournament before you know you CANNOT bank on what is supposed to happen. The only way you can have a real chance and purposefully filling out a good bracket is to have followed the teams during regular season. You have to know who plays well, but not only that…who plays well under pressure, who plays well injured, who hits big time shots and makes big time plays. You have to know the ins and outs of particular teams, players, and even coaches to really have a good understanding of who will go places in the tournament.

Having said all that its still a crapshoot. You can follow every team all season and still blow your bracket in the first couple of games because that how March Madness goes! But, that’s also what makes it fun, entertaining, and exhilarating…

If you are a fan of college basketball I hope you’ve enjoyed these first couple of games, and enjoy the rest…I know I will!

 

Mundane Monday

Well, it’s Monday again…no more weekend relaxation for five more days. I like everyone enjoy the weekend, and especially because it allows me to reduce the amount of time management I have to do in relation to my Cystic Fibrosis treatment, timetables, diet, etc. I can relax a bit on the weekends, and do things in a more slow paced fashion.

So, when the weekend comes around I start to get less stressed in general, and the reverse happens when the new week begins. I start to get stressed out, usually late Sunday, but sometimes not until Monday. Moreover, it always focuses around how I anticipate I am going to feel, and what I am going to have to do to compensate.

I’ve reached a point in my life where most of what I do is routine, and I’m used to it…it’s just my life. But, there are those few things that pop in and out of my routine, that throw a wrench into the gears. Some things become more pressing, some become less…creating a situation where I have to prioritize needs, instead of wants. In prioritizing needs things become extremely convoluted and, unless you’ve experienced it in such a defined way it is almost impossible to explain in a way which the average person could warp their head around.

You may be thinking to yourself I have had to prioritize needs before, and before you start assuming that I’m just making a mountain out of a molehill i’ll explain further. When I say prioritizing needs I don’t mean deciding between needing to get new shoes, or a new belt…or  deciding between needing to get a new piece of furniture or a new TV…or even something more personal like deciding between needing to fulfill a task given to you at work, or one given to you by a family member or close friend.

No, when I say prioritizing needs I mean deciding between needing to go to a Dr. appointment, or getting nutritional supplements…or deicing between refilling a prescription, or making sure you have enough food for the week. Maybe one of the worst of all deciding between what health information to share with family or friends, and what to keep to yourself…for fear of creating more stress or angst among those you love.

There are so many problems that we as CFer’s, anyone with a terminal, or lifelong illness face…some of them are easily adaptable, and some are so disconcerting that we would rather keep them bottled up than share, and have the possibility of allowing those problems to affect the ones we cherish. That is one of the harder parts of CF, it isn’t the coughing up blood, or aching all over, or even being stuck in the bathroom all day. It is watching those around you and feeling their pain as they look on helplessly. It is deciding between several things you have to have, and choosing between the MOST pressing of the issues on your plate to focus on. Making those choices of which need is more important, deciding what issues to keep to yourself, or even trying to shield the ones you love from your spilled over problems can sometimes be more taxing than any of the physical symptoms combined.

I guess that is the kind of problems I anticipate about the new week…what will pop up that I have to set other problems aside to focus on now? How will I approach the unapproachable amount of shit on my plate? And, how will I protect my loved ones from feeling, or even seeing my pain? They are questions I have yet to find answers to and I don’t think I ever will…

So, until I do figure out how to be “Superman” I will continue to do my best to put on a smile, move forward with my head up, but make sure I keep my chin down to avoid the unavoidable blows life throws at me (little martial arts pun). I will take things in stride, and try to keep my cool in all the shitty situations I am faced with, because that is what I have to do to keep my sanity, and to make sure the problems I have don’t become the problems of everyone around me, admittedly this doesn’t always work, but I will try regardless. I will smile, and laugh no matter how much of a terrible day I’ve had, and how badly I feel, because that’s all I have at times…is my inner strength, my will, and my ability to deal with the pain all day, but still smile.