I am honestly terrified for this semester. In so many ways, this is my last chance to turn things around. But I am so, so very worn– physically, mentally & emotionally. Simply getting out of bed or responding to text messages seems too hard some days, nevermind successfully functioning as a student. I know that worrying fixes nothing, and I’m trying not to get too ahead of myself: it’s only been three days. But before the semester even began, I felt like I was drowning. I’m working my very hardest and trying to keep my head up, but I really don’t think I can do this…
As the morning light peeks through the window and you stir into consciousness, sometimes for a fleeting second, you forget.
But you are jerked back into reality as your heart begins to pound– head spinning, choking back acid, muscles aching, nerves burning.
Most days, you lie there for a while, trying to breathe through the pain and gather enough strength to go on about your morning routine.
But a big part of you wonders why you bother to get up at all.
You drag yourself from bed to fight the same battles each day. No end in sight, simply running on a treadmill uphill, hoping to maintain an unfortunate baseline.
It all just becomes so, so very tiresome.
Your physical health continues to deteriorate as your spirit is crushed under the weight of a crumbling sense of self.
You know there are people you would let down if you were to leave. There are those who would suffer if you were to suddenly cease to exist.
So you press on, trying to ignore the fact that you’re trapped– fake smile, one foot in front of the other.
As time passes, your increasing inability to keep up with the world pulls you deeper and deeper into the pit of isolation.
People grow up, get married, move away, retire, or simply forget your existence completely.
You watch as everyone you love fades away.
As night falls and you are left alone with your thoughts, your chest aches with the thought of how alone you have become.
You feel the sting of being unwanted, unneeded, outgrown, forgotten, abandoned.
But as the night turns to dawn, you realize there is no one left to let down. Or at least, there is no one who would have life ripped out from under them if you were to no longer be.
Your body is broken– your very being exhausted and worn– but you close your eyes and let out a sigh of relief.
Tears gilde down your cheeks and a smile slowly creeps across your face as you realize you may finally rest in peace.
[Just some musings from a brain and body currently consumed by painsomnia. No worries– I’m not going anywhere anytime soon. Keep fighting, guys.. ❤ ]
After a difficult semester full of medical twists and turns, I am needing to request a retroactive withdrawal. To begin the process, I had to submit a statement detailing the reasons why I was needing to withdraw.
I found myself struggling for words and anxious about the withdrawal process, so my mom kindly got on the phone and tried to help me figure out how to phrase the letter.
After rattling off a long list of symptoms, procedures, and medical vicissitudes, she finished with:
“This is something I’ve been dealing with for the past 5+ years…”
Wow, she’s right: 5+ years of this crazy, inconsistent life.
5+ years of waking up to fight fatigue, widespread pain, nausea, dizziness, tachycardia, low blood pressure, vertigo, migraines, dystonia, syncope, anaphylaxis, chronic infections, subluxations, dislocations, cognitive impairment, tachycardia…
5+ years of taking more medications than most 80 years olds. Drugs to treat symptoms and disease processes and then even more drugs to treat side effects of those drugs.
5+ years of needle sticks, blown IVs, invasive therapies, painful procedures; “eating” through a tube in my intestines; relying on a wheelchair (though using it less than I should due to fear of judgement); stabbing myself with EpiPens, grabbing at my throat gasping for breath; faking smiles, forcing laughs and constantly hiding behind an “it’s all good”; trying, and usually failing, to balance health, family and school, struggling not to define my existence by my disabilities…
No wonder I’m exhausted.
I’m really worried about Sharon. She just seems so stressed and worn lately. Maybe I’m reading too much into it…I tend to overanalyze people’s expressions, body language, tone, etc., especially when it’s someone I care for deeply. But she just seems so exhausted. Older, somehow. I don’t like what this new place is doing to her…
I’m allergic to my emotions. Every time I cry, I get a rash across my face, neck, chest and arms. Raised red bumps that itch and burn, mocking me in my misery. Talk about adding insult to injury…
I work my very hardest to be “normal” and not to bring anyone down. However, I must say…
It’s indescribably disheartening to sit helpless as a disease detains you in the prison of your own body. You look back at your former life with nostalgic envy, realizing you took it all for granted. From the most elaborate vacation to a simple walk to the bathroom. Every day without pain or fatigue- when you had the potential to say “yes” to every exciting invitation instead of, “No, I’m too sick” to any suggestion at all…so many times that people cease asking altogether.
What I would give for the “normal”- even “boring”- feelings that many my age detest. I would love to get up early to the sound of an alarm clock jarring me out of a sweet dreamland for yet another predictable day of monotony. To get up out of bed, brush my teeth, shower, get dressed, eat breakfast…
To not have to worry about about medicines, treatments, injections, IVs, emergency room visits, hospital stays, dizziness, fainting, blacking out, heart palpitations, dangerously low blood pressure, vertigo, excessive fatigue, weakness, nausea, vomiting, dehydration, migraines, blindness, shortness of breath, tachycardia, hives, anaphylaxis…
To set out to enjoy another day of teenage normalcy instead of settling into the rigor that is the 24/7 management of an unpredictable and all-consuming illness, hoping that my well-disciplined routine will allow me one more day of maintenance and “just getting by.”
I am not seeking your pity- I am incredibly thankful for the life I have, truly, despite my limitations. But I do plead for your understanding.
Please see that I am not my illnesses: I am me…
I’m holding my ground as the army that is chronic illness pushes forward. It may have more weaponry and experience, but I have an amazing team, a little stubbornness, and a lot of untiring faith.