Living with my chronic illness will always be an uphill battle. I’ve realized recently I’ve let that hold me back in life. Some of it I can control, a lot of it I can’t. Setbacks like hospitalizations, 5 day migraines, days where I can’t get out of bed, and losing a job because I physically couldn’t perform it are all things apart of my life now. I need to get a hold of it and just try to get out into this world. Also I realize that people usually set goals as a new years resolution, but I’m not about that #NewYearNewMe stuff. Before I am 30 years old, I need to get some sh*t done. And looking back, I never imagined that at my age I would be where I am, which is all the more upsetting.
- My first goal is to become a full-time paid writer (heavy emphasis on paid). Whether that be content writing for someone else or for this website. I’ve realized that the only things I can do consistently and happily are writing and eating. I find that I need both of those things in my life to stay alive. Writing is a hard industry to break into.
- Finish my effing degree. This is a huge one for me, and the hardest. Getting through courses while having to have a lot of forced downtime is a pain in my ass. I’ve had to switch to online which set me back almost 16 credit hours. Not to mention the frickin’ time consuming BS they pile on because it’s online and they just assume you have more time. People attend online for the opposite reason, but most online professors don’t seem to get it. So I will take this crap one step at a time and finish it because I am too deep in to quit now. When I am done I am going to never look back. College is a necessary evil in my life unfortunately. I can see my friends and family rolling their eyes right now. I’ve been trying to finish for too long, and they chalk it up to me changing my mind too often. When it’s really changing my degree to be able to handle the never ending crap thrown at me since I got sick.
- Move to the west coast. This is something I’ve wanted for years now, and dream about. I want to live in Seattle most of all, but I would honestly live anywhere that has an ocean and more rain than Arizona. This is going to be a hard one, money/time is a huge factor. I need a work from home style writing gig.
- This one piggybacks on writing full-time. I want to publish a book, on what, I have no idea. I’ve been trying to start one, but it really isn’t a topic of my own choosing and I’m finding that I am not very passionate about it (i’ll save it for another time). I want something more creative and short to begin with. I don’t know if it will be about epilepsy or something to do with chronic illness in general, but the topic I’m on is being put on the back burner for now.
What people don’t realize from the outside looking in is that these are huge tasks for people with chronic illnesses. These goals may seem basic and mundane. A lot of us with chronic illness deal with many setbacks and obstacles that others don’t go through. It’s easy to judge when you can hold a steady job and continuously put yourself through school. Try doing that on top of having constant seizures, side-effects, new symptoms, spinal taps, MRI’s, surgery, EEG’s and a doctors appointment once a month if I’m lucky and don’t wind up in the hospital. Try getting out of the house! So don’t mind me, I’ll just be trying to get by and pay my rent. Everything else in life has to come second.
I’ll see my group of friends every few months, and just feel like crap because of how different (and productive) their lives are than mine. It’s easy to chalk it up to being a failure or lazy when in reality it took me hours to be ready to go out and not have to puke, have horrible anxiety about having too many absence seizures and just being quiet because I missed half of the conversation. A lot of people think I’m rude because of this, but in reality it is a combination of being an introvert and having seizures. And now that I’m aware, having auditory processing issues is a big problem I recognize now. It makes me want to pull my hair out some days, but I don’t have the energy for that. I can barely wash my hair on a regular basis.
I may look normal, but what I am feeling at any given moment is not normal. I’ve embraced it now. I’ll take the back-handed comments and looks that others give me and just let them figure it out on their own. There is no cure for what I have, and there is no cure for being an asshole unfortunately.
The point of this post is to show how little of my life I have together at the moment. If you’re in the same boat I hope this lets you know it’s pretty common for people like me and worse for a lot of other people. Compared to many with epilepsy, I have it easy believe it or not, and that makes me incredibly lucky. Probably doesn’t make you feel much better, but maybe it helps a bit.
This also is for people who don’t hire people because of gaps in work history or lack thereof. It’s unprofessional to put on a resume:
Stayed at home (2015-2016)
It’s also a load of crap to have to “explain” yourself to someone. Look at my relevant history and judge that, not what I have missing due to uncontrollable circumstances. It’s not like I lost all of that experience overnight, I did it, it’s still experience. Just spaced out a bit (pun intended). Also, to the call centers of this world, you are not accommodating at all. Offer alternatives and help for people who can’t sit through long phone calls for 8+ hours a day (not that any person should have to do that). There is this thing called e-mail and chat support. Great alternatives! But, far and few between as opportunities go. Also, to the angry customers of the world, the person helping you is not personally responsible for your mistakes (I swear 99% of customer issues in tech are from basic human error). So don’t go off on the person that is getting paid to try and get you out of the mess you made. Calm down, be polite, and stop asking for free crap. Don’t be cheap, it’s tacky.
Alright, I’ve had my gripe.
It took me awhile to realize and clarify what I want in life. I want those 4 things, and setting a time limit of 3ish years is my jumping off point. I want to add a little narcissistic bonus goal: I want consistently clear skin for once in my life (just let me glow!).
Steps I am currently taking to start on making all of this a reality:
- Not making anymore idle conversation or hanging out with “friends” who talk crap behind my back. Maybe they will come around once they realize I truly don’t hate them, I just know what they think, and I find it a bit sad but I know they are decent deep down. Right now, it’s a waste of time and energy to be bogged down in the worry about what they think. Judge all you want, I can’t deal with it right now. It’s not worth my time! I have other things to worry about.
- As far as school is concerned, I am putting all of my energy into figuring out how to speed it up. From the start of the semester to the end of the semester I am in constant contact with my advisor, the financial aid office, and the professor/TA. I can’t stand being pushed around by them. I already am dealing with a load of crap thanks to miscommunication between my advisor and financial aid. It set me back 6 credits and $700. In March, when I am able to start up again, they are getting my full wrath if things aren’t sorted out. I am student who puts my all into any essay or assignment I write, and it shows. I want to learn and gain experience, I just want to be able to do it without worrying about being dropped for financial reasons. School is like walking a tightrope.
- When it comes to being a writer full-time I know that it won’t happen overnight. I was lucky to get two great gigs last month! Also, I am very proud of them. I want that to keep happening. Even if it means possibly starting another website to run on top of this one. I will do it happily! I am working on making my blog content longer and informative. While it takes longer, it’s worth it because I love it.
- Book wise, I need some inspiration and ideas. My recent struggles are helping a bit, weird to say but true. I will need your help with ideas, and I want it to be something you want to read. Maybe a novel is in the future for me.
There you have it, a comprehensive vat of crazy that is my life and goals within. Once I complete these goals, I will have to work on my massive student debt. Not looking forward to that one, but it is in my future to pay off crap schools unfortunately. And when the time comes that I am finally an alumni, I’m going to have a lot more to say. Hopefully, I will have a bigger platform to broadcast the crap loudly and clearly for all to see.
Those of us with chronic illness have to work harder than most to stay afloat in this society. Right now, a lot of us are barely keeping our heads above the water. I get it now more than ever. The stress alone is enough to make us just crawl into bed and never get out again. This is me poking my head out of the sheets and looking around to see what is out there.
Let me know your goals. What has stopped you from achieving them or held you back? Also, let me know some good book ideas that you would like to read.
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