More than just another day.

I woke up this morning with a knife through my head. At least that’s what it felt like. My hands feel weaker than usual and I feel like I’m looking at the world with a fish bowl on my head. My depth perceptions a bit off and it’s making me a little dizzy. Sounds horrible but today’s one of my better days. The pain isn’t as bad, so far. I’m a little more anxious today. I’m overwhelmed with the unknown and the uncontrollable. I’ve been trying to keep an opened mind about things but even as I sit here I realize that my words are escaping me. I’ve learned to accept that there’s a lot I’m not able to do anymore. My shakiness makes it hard to draw or paint. My light and sound sensitivity limit the amount of time I can be outside. I have black out curtains to help keep things dark in my house. Helps me feel better but I’m constantly in the dark. Get’s a little depressing from time to time.

There are all these little things that affect me daily and usually I don’t mind them. I stay positive and focus on the other things I can still do and enjoy. I try not to feel sorry for myself because I don’t have 100% functionality but the one thing I’ve always strived for and worked hardest at is my ability to communicate. I consider myself to be an artist but even more so a writer. I guess my poor comprehensive skills pushed me to strengthen that part of my brain. I take pride in the fact that my learning disability is barely noticeable. Usually I have to bring it up for someone to notice. That’s a great feeling knowing what I’ve had and still have to go through just to understand what someone’s saying to me or something that’s written down. Usually everything in my head is all jumbled so I have to take a minute (maybe several minutes) to make sense of it. None the less, my ability to be well-spoken or well-written was earned and I’m proud of it. If you’re close to me then you’ve endured hour long and long-winded conversations.

Lately, I’ve noticed that my thoughts are cut short. I forget things almost instantly. Even if I was just about to say something. I lose track of my thoughts. There’s a lot more confusion than usual. I can’t find the right words. I’ve accepted a lot of things but losing my ability to express myself is scary.

I’m accustomed to having to read something a few times before I fully understand it. I’m accustomed to politely asking someone to repeat themselves because I didn’t quite catch what they said. I’m accustomed to the delay. What I’m not accustomed to is feeling blank. I’m not used to being lost in my own head. I hated the days when my head would hurt so bad that I’d slur my words or switch letters around but I’d take those days over the emptiness. More often than not, I find myself saying aloud “What was I saying?”, “What was I thinking”, “What was I doing?”, and the often “Wait, what did you say?”. I used to think it was funny when my niece or nephew would point it out and say I was “forgetful”. Took me a while to realize that it’s actually a problem and it’s caused by my headaches.

These headaches aren’t just “aches” anymore. 20 years of unrelenting pain and it feels like my body’s screaming for help and I haven’t been able to fix it. I feel as though my brain is tired of me ignoring the pain and wants me to acknowledge it by having other issues metastasize. I’m scared and I’m anxious. I don’t know how I’ll get through life when my most basic functions are faulty.

I’ve moved past not being able to find a job. Now I’m just focused on finding ways to make money because let’s face it money is necessary. I took another jab at searching thru ads and I’ve overwhelmed myself with my inadequacies. Sure, there’s still so much more I’m capable of doing but job searching is overwhelming regardless. So, what’s out there for me? Unless there’s a company or employer that’s willing to see past my condition and see my true integrity, my dedication to work hard to compensate for the fact that I can’t assure that I’ll be able show up everyday; That when I do show up I’ll work harder than I’ve ever worked before. Unless there was someone out there that would give me the opportunity to prove my worth and not make me feel indebted for their accommodations then my only real option is to be my own boss. Easier said than done but still a more promising possibility than hoping for that little break. Venturing off on my own is a more appealing risk to take than just surviving than just job hopping. I’ve come to believe that I don’t really have a place in this world and I never will unless I not only find my niche but create the opportunity for it. Like I said, I’m shooting for better days and I’ve got a lot of work to do. I’m more than positive that at the end it’ll pay off. At the end, I’ll know where I belong.

The gist of things.

For almost 20 years i’ve been dealing with chronic pain. Every day, my headaches are constant. Some days are worse than others but the pain is always there. It comes in different levels. Mind numbing headaches that linger or sharp migraines that last for days or just a dull pain that feels heavy. Each year passes and my condition worsens. The affects are unpredictable. From black outs, memory loss, slurred speech, confusion, muscle aches and weakness, to uncontrollable shaking. It hasn’t been easy but I’ve learned to live with it.

I’ve always had to work harder than others just to keep up. School was hard. As my headaches got worse so did my learning disability. Took me a bit longer to understand things but I always understood what needed to be done. I always understood what it meant to not give up. I knew that working hard was my only option. As difficult as it was school was a breeze compared to being in the real world though. With all the hard work I was able to graduate from school and had a career in the medical field. (Not my first choice by the way)

For 10 years I’ve been in and out jobs struggling to make ends meet. I worked hard to make a name for myself. To prove my worth as a hardworking, dedicated, and motivated employee but unfortunately my attendance was always an issue. “You’re a great asset to the company but you’ve got to be here” seemed to be a recurring statement from job to job. Some days I’d feel well enough to work; Others i didn’t. Some nights I’d fall asleep feeling just fine only to wake up the next morning with a debilitating headache. I’d risk the commute either way to try and prove my effort. On occasion though, I’d either be sent home or sent to the hospital. Even with my objections I was whisked away.

Through the years I did end up making a name for myself, although, not the name I was shooting for but “Unreliable” or “Liability” were the most common ones. My longest run at any company was about 2 years. The first year was usually a battle to show my abilities and capabilities while the rest of the following year was dodging bullets and write-ups for attendance. Eventually it would always come to an end and I’d be out looking for another job to start all over again. It’s been tough but the last 2 years have been the hardest since I haven’t been working. I have a track record and it’s been extremely difficult to sway prospective employers from that record. Aside from being “unreliable” I’ve come to realize that I’ve become “undesirable”. I’m good enough for an interview but not good enough for a call back or offer.

It’s been such a difficult time for me trying to accept my situation and start from scratch. I haven’t been able to find my way. I was conditioned to believe that I needed to work hard, finish school, and get a job in my career. Only to find out that I can’t keep any jobs because they’re not as understanding or accommodating when you’re not completely healthy. I’m 30 years old and I’m quite healthy; It’s just that my brain isn’t. I’ve seen so many doctors. I’ve taken so many medications. I’ve tried traditional and untraditional treatments. So far, nothings really worked. The only answers I’ve ever really gotten were “pain management” or “cope with the pain”. I’ve had the pain for so long that even the strongest pain killers haven’t worked and my condition just gets worse. My whole body is reacting to this unrelenting pain.

My day to day life is affected. What’s worse is that the day to day lives of my loved ones are affected by it as well. Constant concern and worrying. So much frustration, fear, and anxiety for my well-being and for my future. I just need time to adjust. To learn a new and better way to live. It’s already hard enough on myself as it is.  Having to feel guilty or sadness for my family’s disappointment makes it hard to stay positive about my future but I’ve never been one to give up. I’ve had a lot of experience in starting over. I just wish my condition wouldn’t cause so much grief for the people I care most about. I know it takes a toll on them. There’s only so much they can do to help and they’ve already done so much for me. Sometimes there’s so much pressure I feel like I’m losing bits and pieces of myself but this is just how things are. For the most part, I do a pretty good job with keeping my spirit lifted high enough to keep moving on and moving up.  I shall persevere for better days and better days will come, as always.