I've been out of work now for over 3 months.
In that timeframe I've done way too much thinking.
That means this is going to be heavy.
This is going to be deep rooted.
Unfiltered (mostly) ramblings.
Stable mentally, but thoughts betray those words.
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Okay fine keep reading, I tried to warn you.
I'm overdue for the motivation it takes to deal with this illness.
Every day of our lives we're faced with problems. Whether it's small or big, whether it seems hopeless or whether it's cut and dry, the problems do not go away just because we don't have the motivation or energy. It gets worse sometimes if you neglect your duty to figure out the solution to life's toughest problems. I type this with 40 cm of tube (a piccline) in my arm, at 2 in the morning, after attempting to organize my brain and make sense of what I've been doing to myself all these years. I type this from another huge drastic change in my health, only noticeable when I hit the bottom. It's such a gradual decline I've been tricked into thinking it normal. In general, I see my lung function drop over time and feel hopeless. How can I fight against this uphill battle? That's the easiest metaphor that everyone can understand.
I'm overdue for some sanity.
My whole life is sometimes a cruel joke. I'm quite numb to it after all these years but it still insists on showing me exactly how uncontrollable it can be. I worked hard to put myself through college. It paid off in an internship under a good supervisor who tried to gear me towards this awesome worker/manager/superITguy. It worked, mostly. Then... I moved on soon after changes in management happened. I worked for 5 years, spending easily triple the amount of time working than taking care of my health - those precious lungs of mine. I was always active, I had low health management, and it was "fine". I was f.i.n.e. FINE is a big joke. I wasn't fine. I'm losing lung function in my later 20s much faster than I should be. Doctors tell me everytime I go there. I am now, with 5 years of experience still struggling for a job, in the most hire-able field in this decade. IT work was supposed to be stable. I need a balance of health and life. Health needs to come first. I need to focus on my health, so I can be here to yell at people in my 40s about how they abuse their lungs and it pisses me the fuck off. Wait, that's not right. I need to be here to see others succeed around me, maybe to have some kiddos looking up to me succeeding. Parents live for their kids (the good ones), what do non-parents live for? Themselves or other people? I see people around me confused, and constantly wondering when I'm going to "feel better". As if such a simple thing was achievable by a mere few days of drugs. There are no solutions to the problems, just a bunch of short term fixes. This will take time. This will take patience. This cannot drive me insane.
I'm overdue for a career change.
IT is great, it provides me with distraction, and pays me well for it. That distraction allows me to believe I live a mostly non-cf-plagued life. At least in the open, where people can see and hear - they see a motivated individual who works hard for the goals of the company. I thrive for challenges that actually have answers. In my world, that few actually see, I struggle to keep things moving. I see my health suffer and can't balance. The workforce of this country does not allow for weak people. Nobody wants to pay you to make your own hours and work your ass off, they want to pay you for 3 hours of work in a cube, and 8 hours of your life spent there. They are not willing to bend. Who will break first? It won't be them. The job market is so saturated that I am literally just a name on a paper, on a pile of papers, in an office full of stacks of papers. I need an exit strategy before I work myself into a more-early death..
I'm overdue for the courage to fight, as hard as I can, to do something meaningful in life
I'm overdue for a break from this madness. I'm sick of being knocked back, having to start over.
I'm long overdue for some sort of hope, some positive emotions from my brain - in whatever form.
I'm overdue for being able to breathe without wheezing. I'm overdue for a real pair of lungs.
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It gets better.
I'm overdue for optimism
The rest of this nonsense life of mine is a giant puzzle without one hand, and with a 3 dimensional table with constant-changing-gravity that forces me to pick up the pieces more than actually put the thing together..
Yoga w/ pranayama breathing I think is key to some sort of mental/physical exercise. And being able to monitor my health, would help some I think.. Constant, friendly, positive reminders. Focus. Less distractions and more ability to focus on the things that matter.
I am sick of people telling me what to do, I want them to show me. Show me struggle, show me your pain, and show me how you deal with it. Give me motivation. I want to strive to be better, show me how. Stop telling me WHAT to do, and just show me HOW. Empty suggestions are not helpful. I've dealt with this negativity so long, one little suggestion isn't going to light up an entire castle of darkness. It requires much more light. If you want to light up the darkest dungeon, you need much more than one bright lightbulb of an idea...
I need to figure out a long-lasting self-producing-promoting career. I think web development is key. It's easy, I have a background, I can begin almost immediately, and I can grow. I need to drop the other nine billion things and focus. It's tough, obviously. I have a sense of want to thrive as much as I can, and I know my work will reflect it however I need that opportunity to do so. I need to breathe, easier. I am sick of carrying the weight on my shoulders. There's nothing I can do with all this pressure but collapse or succeed. I've always told myself succeeding is the only option, and I don't plan to change that now.
I need to make a difference to make this life worth a damn. I won't struggle to breathe my entire life only to come up short on making a difference. I won't go through this struggle to not achieve anything, to not help anyone else through it. I will do something. I just don't know what that is yet.
Hi there, I have CF and am 27 as well. PFTs are at around 80%. Homozygous Fdel508. I found a link to your blog on CysticFibrosis.org
ReplyDeleteWhat programming languages do you know? I've taught myself Python, NodeJS, and AngularJS in the past year and have known PHP for some time. I read through the AngularJS docs in a hospital bed. I make good money in a Director level marketing role at an ad agency but am in the middle of building a marketing tools web application. I was in the hospital 5 times last year and understand where you're coming from with doctors saying everything is fine. I'm not interested in being just fine. I want to live until I'm 65 and be feel absolutely fantastic. I feel like docs hide a lot in the interest of trying to keep patients feeling positive, that's why they say we're fine.
I've been making big changes in the last year since those 5 hospitalizations and culturing mycobacterium abscessus. Moving to an apartment within 2 mins walking distance from work. Joining a gym and consistently lifting/doing cardo. Sleep schedule changes. Water intake. Etc. I've been experimenting with supplements for years and use a home spirometer to track my experiments.
Every day I obsess over making my life worth a damn. I've worked too hard to not make it worthwhile. That's what drove me to learn programming languages and build + finance a startup. For me it all comes down to discipline and focus. Ruthless focus. Simplifying everything to the absolute minimum. I feel you though, sometimes you just don't have the energy to do what you know you have to do. I have found that I need to be realistic and persistent. Take it one step at a time. Setbacks will happen and they should be expected. Motivation will wax and wane, but you have to push through it. Temper high points and power through the low points.
Most people in our generation don't get it. They won't even think about dying until they're diagnosed in their 40s with high cholesterol and imagine they may have a heart attack and die one day. I've seen marketing studies done for cholesterol drugs demonstrating exactly this. This means that you are stronger than most. If you can overcome your CF enough to start building something valuable then what can stop you? You've already overcome the worst.
Feel free to connect on Facebook. It would be great to chat... https://www.facebook.com/freeman.caleb
Hey, thought I replied to this. I linked to you on FB but not sure if you saw it. I just finished a online web programming course on Python and I've been enjoying that language a lot. I just have not been able to gain a mastery as quick as I'd like. Too many other things going on that require my full attention, unfortunately.
ReplyDeleteI've started building websites using bootstrap - it's a skill I've long since had polished, but something i plan on pursuing on the side. I am in the middle of building a few websites that will showcase some of my work and design... when I can focus.
I hear you about the docs. I think ultimately they are along for the ride like we are. They see and hear about people passing away and they obviously want us all to not go through that same fate. My doctor told me, she says "nobody follows the routine 100%, it's unrealistic in a lot of ways". They get it, they do what they can given the knowledge, but it still isn't enough.
I feel like we share some common understandings. It's refreshing to see. Keep on keeping on Caleb. I'm sure we'll connect soon
I love Python. I learned it last year between hospitalizations and have put it to good use. I'm learning Google Go now. The algorithm I created in Python is too slow (took a week to process 15 million data points). Go was able to do the same in 20 mins. I still use Python's Flask as a web server. Bootstrap is great for Frontend. Bootstrap + AngularJS are amazing for build a web application. Angular has a dependency injection mechanism that once you get it you love it.
ReplyDeleteDocs are interesting. I have a doc from my childhood that will shoot straight with me, but my primary doc seems to try to hide or sugar coat things. I get it. Many patients can't handle things emotionally. I've gone through the bouts of depression and struggled with the pain. I've learned there's always great things on the other side if you push through the pain. So I just focus on what I can control and treat the pain like a teaching tool.
Shoot me another invite on Facebook. I probably ignored yours thinking it was spam.
I cannot friend request you after you denied it seems. I sent you a message though
ReplyDelete