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…

 

The Plunge…this sucks!

Well, I’ve kind of been waiting for this to happen for a few days since I’ve been naturally feeling not terrible, and have been enjoying watching some really good basketball games…I’ve been elated, enjoying the natural high of life. But…waiting for the other shoe to drop.

It just hit me like a ton of bricks, as I am sitting here watching some game recaps, I feel that nasty pit of the stomach feeling start to churn, it is angst, dread, fear, loneliness, just discomfort on a deep psychological level. The other side of the effect of waiting for the other shoe to drop type feeling, well it has dropped. And it is ripping my stomach apart as I try to control it.

I literally just made a post probably less than an hour ago, and I wasn’t in this mood. I know all people experience this kind of thing, just maybe not in this amplified of an impact. Having Cystic Fibrosis I am used to dealing with discomfort both physically and mentally, and I have a pretty well developed sense of how it is impacting me and how I can keep it in check. Having said that, I also have NO control sometimes, and this is one of those times.

I am sitting here at 12:30 am, I’m alone, and uncomfortable…in a terrible way. These are the times I anticipate with fear, almost more than anything else. The feeling of dread fills my mind, and my stomach in trying to rip its way out of my body to find an escape.

I usually wouldn’t share this type of stuff, I wasn’t raised to complain, but I’m trying to be as real as possible and make this site/blog raw, real, and not sugar coated…I was raised well, and raised with the idea that you don’t complain unless you need to, “don’t cry wolf” I guess would be the best way to describe my discipline in this area. There are times I need help, physically, and even mentally…but, if I always say how crappy I feel I would be complaining almost constantly and more so when it gets bad, but this is one of those times. So,where I usually just suffer in silence as to not create stress and tension among the ones I love, I am using this as my outlet. Trying to share my pain in an attempt to understand it better myself, but also to show how much of an impact something like CF has one people aside from the physical affects.

Obviously, this will subside at some point…but I don’t know when. So, until then I will try to distract myself with meditation, video games, TV, anything to take my mind off of this for just enough time for it to fall to the back burner in my already scrambled brain. As I said I don’t usually share this stuff because it Is my shit to deal with, I am trying to be more open, and hopefully shed some light on what impact an invisible illness has on the person, like I said, aside from the physical impact.

So, with that I am off to distract myself, I apologize if this post seems to just be a long winded complaint. That wasn’t really my intention, but I think it was the outcome.

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.

Routine Extraction

Wake up: 8:30 am (feeling pretty good today)

Make some tea and have an orange and a couple of doughnuts: 9:30 am (not having too much trouble today, must be one of the good ones.)

Take the dog for a walk and stretch/get some fresh air: 10:15 am-11:00 am (nice weather finally)

11:15 am – 2:00 pm: bathroom routine, and shower (extra long shower enjoying the hot water after a long walk)

2:15 pm: make some lunch, and watch a bit of TV (Tuna sandwich and chicken noodle soup, and this new show called “Taboo” which I must say is pretty cool, weird but cool)

4:00 pm: making some phone calls, handling my daily routine of household stuff, cleaning etc. (reveling in the fact that today isn’t really too rough)

5:00 pm: got to talk to my Dad for a good little while (something I don’t get to do too often)

Really having a pretty nice, and normal day…enjoying the weather and playing with my dog, as well as catching up on some stuff I’ve been putting off…can’t complain.

And then my luck rears it’s head and the routine turns to shit!…As I am eating a late afternoon snack I take a bite of seafood pasta, suddenly I feel it. I bite down on a piece of shell, and CRUNCH…one of my teeth breaks…son of a bitch! I run to the bathroom and start examining my mouth, rinsing with mouthwash and getting out my floss sticks to make sure everything is ok. It isn’t…I realize I have broken my back molar and a rather large piece of the side has come off. F@CK ME!! This is just my luck, as I am taking the nice day for granted I get a visit from reality…

So, with CF I have a serious vitamin deficiency, mainly ADEK. One of the thing’s I have come to accept about the Cystic Fibrosis is this: weak bones, weak joints, rapid aging of the body and it’s components. And, just as I am eating my snack it comes back onto me like a ton of bricks…I will be dealing with this kind of bullshit for the rest of my life.

Now, tomorrow when I wake up I will have to call the dentist, and be prepared to be told “you need an extraction” being that the last time I had a serious dental emergency that is what I needed. I am expecting to have a pretty crappy couple of week waiting for an appointment, and trying to figure out how I am going to pay for what I hope is a routine procedure, but due to the nature of CF and the poor health of my body in general, I am expecting the worst. “William you need an extraction of your back right molar, we don’t have any opening for a month, and your dental insurance doesn’t cover this kind of stuff, it will cost around $1500.00.”

You get used to dealing with problems on a regular basis with something like CF, and this is definitely one of the more jarring and miserable ones, as my body deteriorates at an expedited pace. So, here we go…ill find out what is going to come next tomorrow when I call my dentist. FML!

Struggling

Its about 1pm on Friday, and I’m struggling pretty badly. Haven’t been feeling too good this week at all, I’m definitely having a rough week to say the least. Just a couple of the things that have been ravaging me this week:

  • Cold –> hot –> cold –> hot –> Freezing…this weather where I live is strange to say the least. When it goes from hot to cold like this, especially this often, my body has to adjust and readjust, and it makes things incredibly hard.
  •  I had some kind of food poisoning, or at the very least a nasty stomach bug. Been in the bathroom a lot. When I’m not, I’m in bed trying to keep myself in the absolute    “right position” so my body can relax and give my abdomen a break.
  • Then there’s the outside stressors that have added onto the joy of this week like getting a notice that my car insurance is going up, and I still can’t find a reasonably priced health insurance.
  • Also, had a death in the family…my Grandmother’s brother died a few days ago, and when people around me die it makes me wonder how I am outliving these people who die for no reason, meanwhile I’m sitting here struggling to breathe, and I’m still alive. Just a weird sort of mind job I’d rather go without.

So, ya that’s what my week has been, riding the struggle bus for sure, but not because of a hangover or anything where I had too much fun. Just the regular old BS that having a chronic illness brings to the table. That’s also the reason I haven’t blogged in several days.

But, anyways…I am finally starting to get a little relaxation and some of these additional symptoms are going away. While I can I am going to try to get some stuff I need to get done handled. Hopefully everyone had/has a good week, and now weekend. Ill try to get up another post a little quicker next time. Hopefully today is the last day of this extra fun! Lol.

Sorry, I can barely think straight, so no CF tips, or body hacks on this post. I’ll add one the next time for sure.