Monday, March 21, 2016

Tomorrow is a new day

A peak inside my lyme-filled, neurologically impaired, frustrated brain:

Pain. Unbearable pain. Like a pack of wolves is ripping your legs to shreds, piece by piece. Like someone took a thousand hammers to them, smashing away the ligaments and muscles. A type of pain you cannot see from the eye. You look normal. Healthy. We chronic pain patients become a pro at hiding pain, to blend in. It's just part of the job.

Then there's the lungs. Every labored breath feels like a 40 pound bag of flour is sitting on your chest. Worst of all is the brain. As a former athlete, I spent 4 years needing a wheelchair and was often bed-bound. Trapped, like a prison cell. But the bars are invisible, and to the naked eye it looks like nothing's wrong.

The physical symptoms aren't nearly the worst though. It's the neurological stuff. I can handle pain, but when your brain is under attack, infested with millions of spirochetes spiraling their way into every crevice of your tissue, cells, muscles. When your brain is in a battle, you're not you. You lose your personality. In a matter of a week your reading capacity drops grade levels. Your IQ drops and if you're lucky maybe some of it will come back one day. I cannot put into words the feeling when you can't remember how to pick up a pencil & write. You can sit there for hours and hours, simply staring at it. But nothing changes. You're no longer you.

This is the reality of advanced neurological Lyme disease. I've come a long way. A hell of a long way. There's a light at the end of the tunnel, that I'm sure of. But some days, those days where you're alive but not really living, subsisting off pain narcotics just to get through the night, those days feel like that light is an oncoming train. That said, there's tomorrows for a reason. Tonight might be one of those nights, but I know without a doubt, there'll always be better days to come. So you take your treatment, distract yourself from the pain, & live to fight another day.

This is my life as an advanced tick-borne disease victim. And sometimes the only relief available is to say to yourself "tomorrow is a new day."

Onward & Upward,

Friday, March 18, 2016

"Don't waste a single second, promise."

The other day I was moving around the furniture in my room, when out of nowhere flew out a piece of paper. It was a letter that I must have written to myself years ago. I'm not sure where I was at in treatment at that point that lead me to write this, but it's clearly a message I wanted myself to remember and I found it on a day when I truly needed it! Sometimes it's hard to see out of the fog past where you are at this time and place, but the universe always seems to nudge you in the right direction. 

Tuesday, March 15, 2016

Keep calm and drink coffee: Lyme disease edition

Today is Tuesday, meaning my spring break is near half-way over. I've been struggling a lot with my symptoms and haven't left my bed much. But some much needed rest isn't the worst! I'm sitting here at Starbucks- I thought maybe if I was in a place where I couldn't simply go lay down when I didn't feel good, that I'd be able to get some work done. I have a paper due the first day back from break.

My coffee hasn't quite kicked in yet and at this point, the table looks like an awful comfy napping spot. Perhaps, miraculously, writing on my blog here will give me that boost I need. But first, a little people-watching.

Admit it, we all do this at Starbucks. Over-priced coffee and some fresh gossip: the two things you can count on here! It's evident the area high schools must be on spring break too. I'm surrounded by Ugg boots, excessive piercings, and about a dozen "non-fat, sugar-free white mocha Frappuccinos." If I hear one more "I literally can't even," my eyes may just roll out of my head. Okay, excuse the condescending tone. It's now also been made evident to me that my pain killers haven't quite kicked in yet.

Back to the people-watching; there's some even better gossip coming from the group of couches, this time in Spanish. At least my two semesters of college Spanish payed off for something. I really liked those classes, they made sense. Simply learn the words and put them all together, not much thinking on your own part. I enjoy my English class too, but it’s more of a challenge. First, there’s the readings. They’re all great works of art, ones every college student should read at some point. However, reading comes very difficult for me since the onset of my illness. I read each essay over and over and over again. Each word seems to go in my mind and gets lost in the fog, never to be seen again. Needless to say, it's a struggle. But forget that, then there’s the writing.

I went into this class very much so lacking confidence. The last formal English class I attended was middle school. I’d never had to develop a thesis statement, formulate an outline, or do a works cited page. My knowledge starts and ends with “use the hamburger method for writing,” and what to do with that I’m not quite sure. So, I go to every class I’m able to- doesn’t matter if I’ve spent the night in the ER and still have needles and tubes sticking in me, you’ll find me in room 012, sitting in the 2nd row with my cane and meds, attempting to participate. I need to put in my every effort possible, and if I fail, at least I’ll know I did everything I could.

So that brings me to my current assignment: a four-page thesis-support essay on poverty. Sounds feasible, right? Agreed! But with a brain and body filled with spirochetes whose life goal is to make your every move a struggle, just about anything can be difficult. "But, you're writing this, so that means you should be able to write your essay then, correct?" I would think so too. I just simply can’t seem to get the thoughts floating around in my fog-filled brain to come down and form a coherent paper. I could re-visit our poverty readings and gain some ideas, but between the short-term memory loss and brain fatigue, I can’t seem to read past the intro paragraphs. Nothing clicks. That was made clear to me after many hours spent staring at papers this week.

That brings me to right now: four in the afternoon, slurping up my last sip of iced coffee and likely looking productive to the other customers, (unaware that I'm typing up my silly thoughts on what is one step away from being a diary). I can't help but contemplate how, if I struggle so much with a basic 3 credit class, how on earth I will ever get a college degree. That question must day at a time: I made that promise to myself. So, back to my homework I shall go.

Until next time,

Friday, March 11, 2016

From frustration to motivation

A peak inside the mind of a chronically ill student, unfiltered.

I'm sitting in Colburg lounge, one of the nice dorms here on campus. There's a stretch of windows with an encapsulating view of the lake, one too perfect to describe in words. I tend to hide out here. This is my happy place. Correction: this was my happy place.

Every other minute, a different student walks through with their luggage & a wide grin of relief. Today begins spring break. There's laughing. Chatting. Talking of plans. They all seem to have a skip in their step. After the long dull winter, the bright sun & fresh air has Wisconsinites in bliss. Normally I would be walking out to the parking lot just like them. However, a brutal albeit brief series of seizures on the concrete outside Colburg last week has me unable to drive and not in the greatest shape.

Today is an okay day. I made it here with the help of my cane. I'm in severe pain & neurologically impaired to the point where it's difficult to function, but I'm out of bed, I'm conscious and alive, and so that makes today an okay day. Maybe even a good one in the grand scheme of things. But an "okay" day in the eyes of a chronically ill patient doesn't constitute what's needed for an okay day in college. I need to be at the top of my game. I cannot get anything out of class if every word I read is floating, flashing, completely incoherent. I cannot function in class if my hands are numb, unable to write or take notes. If the pain's too bad to focus, if a layer of fog is settling within my brain, making words float in and out with no apparent organization. So today is a good day for a patient who's simply grateful for the little things, but a mess of a day for a student.

By this point dozens of people have passed by. I don't know anyone at school yet, so here I am, penning down my random thoughts. I can't quite remember how I got here in the building, when I sat down, much less what I wanted to achieve with this writing. Lyme brain will do that to you. I'm grateful to be in college. Many lyme friends of mine haven't been fortunate enough to even graduate yet; I'm a lucky one.

I love school but at times I hate it. My once well-working brain takes ten times as long to do something & has to try ten times as hard just to get the same outcome as everyone else. That's okay. I'm at peace with my journey & grateful for my adversities. But on days like today, when no matter how much I try to overpower, Lyme controls my every move. Days like these I can't help but be a little frustrated. That's okay too. As long as I remember to turn that frustration into motivation. So maybe today was just an okay day, but I'll never stop fighting & hoping for better days.

Love & light to all my chronic illness warriors out there

-Onward & Upward-

Wednesday, January 13, 2016

don't quit your day dream

written January 13, 2016

When I first got sick, all I wanted was to get better. It was the start of 8th grade. "The doctors are gonna fix this, I'll be back playing softball 2nd semester." A year went by. Then came the experimental IV treatments."I'll be back for Fall to start out high school; it'll be my fresh start." 

Next came the real diagnosis: Late Stage Lyme disease that had spread to my brain, central nervous system, and beyond. Prognosis: "she may be too far gone". I don't remember these parts. I WAS too gone. But there was always hope. Always. Tenth grade, that would be my comeback. Tenth, 11th, 12th, they all came & passed. I watched silently in a bed. Like sitting in a coma watching your life pass by you. And you're stuck there. Awake. Alive. But not really living. Still, hope remained. Full recovery would happen. 

College! That would be my saving grace. "So be it, I missed middle school & high school. Overrated nonsense. No obnoxious prom dances or girl drama for me. College awaits." The brutal hell that is Lyme disease treatment & all that it encompasses would all be worth it. Every pill. Every IV. Every procedure, every night where you feared whether or not you'd wake up in the morning & part of you questioned if that'd be so bad, because the unbearable pain would be gone. Free. Pain- free. Positivity is my motto, but i'll be blunt on this: life with chronic lyme disease is a living hell. But it'd all be worth it. Each goal kept me going. Call me competitive; I was in it to win it.

College came. I gave it 110% & had 3 glorious weeks of calling myself a full-time college student. But, surprise, Lyme swept in. My last day was mostly spent lying on the hallway floor, feeling my body slowly slip away. Hours past, people walked by. Students laughed or stared. Professors left a concerned smile while passing by. 11:59 came. English was over; time to pick up my stuff. I twitched & shook as I tried to pick up my backpack. My professor helped me gather my stuff and I went on my way. For the first time in quite a while, tears streamed down my face. College wasn't going to happen. At least not how I pictured it. How I planned. 

I set goals for the next semester, then the next & so on. Over six years into my illness & 1.5 years since graduation and here I sit. In my bed. Hooked up to an IV and day-dreaming of healthier days. The lofty goals I always had in mind no longer seem to burden me. If I never become a normal person: go to parties, get a degree, a job, some friends, a white picket fence, the whole 9-yards, I'll survive. I'll be okay. All I want is health. To be able to go on a walk. To take a deep breath and not feel like a shard of glass is being hammered into me. To be able to hang out with family without every sound, every ray of light, every pattern on the wall feeling like a bolt of lightning to my central nervous system. To be free. I'd be content living in a tent on the side of the road if it meant health. Recovery.  And as such, I am putting my everything into getting better. Still remains my hope. My faith. That's all I need. Faith and family.

I had this perfect image in my head of life post-Lyme, like everything would go back to normal. Maybe normal is overrated; perhaps it's the highs & the lows, the imperfections, the overcoming of obstacles that make our life an adventure. 

I've finally learned to pace myself. Pushing yourself to the breaking point may work in sports: the world I grew up in. But Lyme treatment is a marathon. A very long, odd, dreadful marathon. A balancing act nonetheless. And so, my current goal is to attend a 3 credit class this semester. As bad as my health is currently, completing this class would be a miracle. But I will try. And if I fail, I'll be okay. Because I'll get there.. Eventually. All good things take time. This new college may be my fresh start. Maybe not. But I will always keep going. After all, hope is one of the greatest medicines.

"I am not what happened to me. I am what I choose to become."

~onward & upward~
Until next time,