Spread too thin…

Well, I have been trying to make a post a bit more often but like the title says I’ve spread myself I bit thin…but, in a good way.

I have been hitting the gym consistently, today I did chest, tri’s, and calves. Maybe ill post one of my workout routine’s soon. However, one of the things about Cystic Fibrosis is you have to pace yourself or you’ll burn out quickly. So, basically every other day I have to “rest,” which in CF terms means: hang out around the house, don’t do anything too active, eat and drink a lot…and sleep as much as possible to allow the body to recover.

I’m not gonna lie I can deal with not being able to breathe well, put on weight easily, or even taking 100 pills a day. What I absolutely hate is “resting!”

There are only so many thing you can do before you start to go a little stir crazy…and it gets difficult. So, I’ve been taking on a few new projects, trying to get my foot in the door in a couple of new situations…just for some change of pace.

And, also to try to acquire some new income streams. Since working a 9-5 is kinda out of the question for me, I have to be creative. Its a bit of a pain in the ass.\

But, recently having a few things going on simultaneously, trying to keep a steady workout routine, and taking care of my CF stuff I have a bit more on my plate than I usually do and I can feel it, and the pressure.

So, I guess that’s good problems to have…things can ALWAYS get worse…lol. As such I like to enjoy myself as much as I can when things are going “well.”

Anyway, hope everyone is having a good week. Its almost Wednesday so that’s cool…but, I appricaite you reading!

-p.s. I added a new body hack, and daily tip, the focus is working out, and nutrition based on health benefits…check them out!

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Hitting the GYM!

So, I haven’t been posting as much recently, which wasn’t intentional…I had been feeling a bit crappy for a while.

However, lately I have been pretty busy and just haven’t had much free time. As I’ve been trying to create a positive snowball effect of things to improve my life a little bit.

I have been consistently hitting the gym..an working out with a trainer friend of mine. Gains son! Lol, anyway…I have been seeing some pretty decent results not in just physical appearance, which used to be the most important thing to me…wanted to look good when I took my shirt of, haha…but, also in actual applicable strength. Something that I know many CFer’s deal with when they go extended periods being stuck in bed, or being told by Dr.’s to “take it easy…”

It is very easy to develop a sedentary lifestyle when you have something like CF or anything that is chronic and debilitating, it becomes almost SOP to take is easy. It takes less to feel sick, especially when you don’t limit what you do, so putting limits on yourself is just almost a knee-jerk reaction.

So, I used to be pretty heavy into body building, I weighed like 160 and was pretty jacked especially because of my body frame, and the near 0% body fat, lol…CF does have some benefits, even if they are kind of shallow…I went a good long time away from the gym, but I had some muscle memory still and the first couple workouts were surprisingly beneficial. Then you hit that “wall” where you really have to push through because you aren’t seeing the same instant results you were seeing for those first couple of workouts back.

Now, it had been about 1.5 months and I’ve been pretty consistent, I’m seeing some new muscle definition after breaking through that wall of resistance you get for the first but of time you start lifting again…its kind of a strange feeling to describe, but you feel “off, slow, weak, out of place, unsure of yourself, or even unsure of your workout routine…”

It took a few weeks for that to go away but, since I’ve experienced it before I knew I had to keep at it and let myself feel the frustration, so that I could feel when I passed that wall…and sure enough I did, I started being able to lift more, seeing more perpetual pumps, and generally having more energy and strength during the days.

It goes without saying that the physically visual benefits of working out are what a lot of people go for, I used to be one of them…but, as I’ve seen more CF related problems come into my life the impact that isn’t outwardly visible is WAY more of what I’m going for…useful, applicable strength, and generally feeling better…that’s what I hit the gym hard for. Don’t get my wrong though, it’s a great feeling to go into the locker room post workout, pull off your shirt, and see he visual improvements of killing a workout.

Well, this is a pretty long post, but I wanted to jump back in with both feet. I am going to go back to doing a couple of posts a week, as well as some new body/CF life hacks…and now I have a few more that I had forgotten over the years.

So, if you have something life CF or any chronic illness that greatly restricts what you can/can’t do sometimes the benefits of pushing that “I don’t feel good, I’m just gonna take it easy” feeling out of the way, sucking It up, blasting a few albuterol shots, and just getting out and doing what you need/want to do outweighs the consequences you will end up facing. For me the biggest one is actually psychological. And there’s an incredible benefit and feeling to know I could have stayed home but I sucked it up and did my thing anyway.

Hope everyone has a good rest of the week, thanks for taking the time to read!

–  Will

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

Love the sound of rain…

I haven’t been posting as much which is going to change shortly, as my health comes back around after the changing of the seasons that happens to screw me every year almost like clockwork…I am going to start getting my shit together and doing what I need to do.

However, I have learned over the years what “pushing it” can do and I’m not gonna be stupid anymore…so, I’m taking it slowly…but, expect more like a post a day or at least a couple a week coming up.

So, right now I just got done showering, I’ve been super busy the last couple of days trying to catch up on stuff after a surgery, and general CF stuff, as well as Spring cleaning, and all kinds of other stuff going on…we’ll just say my schedule is jacked the hell up.

But, back to my topic….rain. I’m sitting here listening to music and I have now turned it off, so I can listen to the rain, I love the rain…it relaxes, de-stresses, and allows for a “white noise” type of sound that can be used to enhance an already relaxing task like meditation.

So I am about to mediate and I am loving that its raining because now I don’t need any Zen music to play, I have the rain…lol.

I guess this was kind of a weird all over the place post…it is kind of my brushing the cobwebs off post. Getting my typing skills back down and used to being used on a daily basis for something other than mundane tasks.

Well, I am done rambling…lol. Hopefully everyone has a great weekend.

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

 

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.

 

Dating with Cystic Fibrosis

As I have created this page, I get more people specifically looking for CF pages than anything else, it isn’t really something of a topic most people will stumble upon and read just to learn more, and that’s fine…I’ve accepted that.

However, I have had a few friends read this page, people who have either a friend or family member with CF or know someone with CF…it isn’t a large group, but there are those who do.

One common question I get as my CF becomes more prevalent in my life, and it shows itself more than it did when I was a younger man. How is it dating when you have Cystic Fibrosis?

So, here’s the answer I give them: Dating in general is a hard thing to do, especially in the times we live in where most people just want a quick hookup, as there are no less than 5 apps/sites dedicated specifically to that. But, having something like CF where if the person you are dating finds out and looks it up before you can explain what CF is like, they’ll probably be scared off. So, if you can make it to the first date, be honest…it is the best way to break that uncomfortable barrier. If the person you are dating comes and is curious explain what CF is, but don’t be graphic and morbid, ease them into life with Cystic Fibrosis. Allow them to see, you are just a person like anyone else, just so happens you have CF and have to take some pills, and do some breathing treatments. Here’s where it can get tricky…the first time that person sees you “sick” will tell you everything you need to know about dating them. If they are caring, concerned, and curious chances are they are a good person for you to keep dating, most people like that are genuinely good people. But, there are also the ones who will be fine, until they see you sick and it will scare, intimidate, freak them out, or maybe just not fit into their idea of what they want in life, which is fine, but totally on them. You control what you can and the right person will be the person you need them to be.

As far as everything else goes i.e. long-term relationship, living together, sex, marriage, etc. It is all do-able with the right care, planning, and most importantly the right person.

Change in Progress!

I have been putting a lot of time and effort into making this page something besides a “blog page.” I want it to be interactive, to give us CFer’s, who sometimes have more time on our hands and time for our brains to go to dark places something to do. A place to come to just kill some time, or do something distracting. I am working on some very cool, or at least I hope that it is cool, stuff for this new site. Some interactive stuff, some story sharing, or maybe even real time chat, or discussion type setup.

I have been putting several hours a day not just into creating this new template, and design of my page, but trying to take it away form being just a blog. So, I hope you enjoy it, and it will be changing for probably a couple of weeks. When I am done though it should be pretty AWESOME!

I hope my ideas, design choices, and new direction of this is something y’all enjoy, and if you would share it with people you know so I can reach out to some other folks, who either have or know someone who has CF, I would really appreciate it.

I am worn out, as I have been looking at a computer screen for several hours a day at least for the past several days. So, please forgive the lack of new blog posts, and the “construction” of this new setup and design that I am implementing. Hopefully, when it is done, it will all be worth it. Goodnight, hope everyone has a great weekend.

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!

TV/Movie Binge

This past weekend, I was going through my cable box movies, and sometimes for a day here or there, or even a weekend I notice that the “premium channels” HBO, ShowTime, Cinemax, etc. are open. Now, I watch a good bit of TV, but I’ve been trying to consciously reduce the amount of time I spend bingeing TV or movies, with CF that’s easier to say than do though.

When you’re laying up in bed after being in the bathroom for several hours, or you haven’t been able to keep food down because you’re coughing so much, TV is one of the easier ways to “escape.” Therefore, it becomes almost like a friend, you desire good TV and are mad when nothing is on or your cable provider is giving you a hard time.

Like I said though I’m kind of a frequent binge watcher, I can literally watch 2,3 movies in a row or kill an entire season of a show in 1 day and 1 night. So, it’s one of those things that is kind of like social media in that its annoying sometimes and doesn’t always go the way you would like it to, but its really nice having it when you need it.

Recently I was scrolling through my on demand options and noticed that all the premium channels were open, so I jumped right in…I watched several great movies, ones that I’ve been wanting to see but didn’t want to buy, or forgot about until I saw their title again. I watched “Legend” with Tom Hardy, AMAZING movie, right up my alley. I also watched the new “Fantastic 4,” which I found to be kind of boring and stale, especially with the cast they had available to them, it was just scripted weird and predictable. Then I watched the “Imitation Game” which I’ve seen before and is one of my favorite movies, but more so because Benedict Cumberbatch is a bad ass actor. I like this whole wave of European 25-40 year old actors that have taken over the movie scene in the past 10 or so years: Tom Hardy, Benedict Cumberbatch, Christian Bale, Gerard Butler, Daniel Craig, etc. After I had a chance to search through what was available, I also watched “Triple 9,” which was a little bit of a letdown, and not very well cut together. Finally, I watched “Burnt” with Bradley Cooper, and that wasn’t what I expected, but in a good way. It was super intense, but very good and I’m a fan of the guy from “the American’s” on FX who was basically his nemesis, or rival chef.

All in all I had a couple of days there where I was just zoned into the TV and being able to escape like that for someone like me with Cystic Fibrosis, or any terminal illness where time can almost stand still while you feel like shit, but fly by on the days when you are feeling ok, or even good is an absolutely amazing feeling Being that most of the time any escape is just a less of two evils type of thing i.e. if my stomach isn’t feeling so great today I won’t notice as vividly the ability to not be able to eat, or that I’m coughing up a bunch of nastiness. And on the flipside, if my breathing is raspy and I cant get a full breath, the last thing on my mind is how my stomach feels even though it doesn’t feel good, my preoccupation with my breathing takes the focus away from one and puts it on the other.

Funny as it is though sometimes neither matters, and I cant breath, I’m stuck in the bathroom , I’m sore and achy, I’m coughing up a lung, and bleeding out every orifice of my dysfunctional body. Those days are my “hell,” the other days are my normal, and as I get older the day that seem like hell are steadily becoming my normal and what I now consider “normal” are becoming the good ones…LOL it sucks, hands down.

So, with that being as much as I can get out of my fogged out brain today, I will say good afternoon, and hopefully everyone has a good rest of the week. Follow me on Twitter @William85887, and pass this blog along to someone you know whos going though a  hard time, maybe it will allow them to forget about their bullshit, by focusing on mine for a bit. I appreciate any who have stopped to check this site out, it means a lot to me. Feel free to message me on here or Twitter, with any questions, comments, advice, etc. I’m always open to meeting new people and hearing new, stories, ideas, or POV’s.

CF Life tip of the day: Don’t let your anger or frustration with your situation dictate how you treat people, always be kind, and if you feel like you’re going to “blow up” go close yourself in a room take 5-10 deep breaths, and try to think about the positive interaction you have had with that person. Not blowing up on someone when you don’t really mean to direct anger at them is a great feeling, and after a couple of times of harnessing in your aggression or negative feeling of any kind, it will become easier, and each time it feels a bit more satisfying.

CF Life Body Hack # 6: If you have to go somewhere and you don’t want to be coughing the whole time, which draws all kinds of weird looks, and unwanted attention, buy a pack of the most “natural” cough drops you can find. Take a few with you, and when you’re going to be around people pop one in your mouth and moisten it, but don’t keep sucking on it Then, tuck it back next to your jaw where you jaw meets your ear in between your gum and teeth. Now don’t do this all the time as stopping the natural reaction of your body coughing is not a good thing. But, if you need a hour here and there where you aren’t coughing up a lung or don’t want puke in front of a bunch of strangers this is a very good little trick.