It’s Only Been 3 Days…

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…

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No Wonder I’m Exhausted

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.

Post Appointment Thoughts…

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…

And The War Wages On

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.