Wednesday Words: Gallimaufry 🌀

This pretty accurately describes the majority of a spoonies life. A confused jumble and medley of things.


Symptoms (and more) are so unpredictable. One day we might feel great and the next day we may feel like we cannot even fathom getting out of bed. Treatments are also unpredictable. Some treatments work, even if only a little bit, and some treatments work so poorly that they may even make our symptoms worse. 

Life is a rollercoaseter for everyone. Ups and downs, unforeseen curves, etc. For people living with chronic illness or disabilities, life is a completely unstable rollercoaster. It’s a gallimaufry. 
 Spot on 👍🏼

What’s the Word? “Vatic” 🔮

Wednesday words ⚡️(Adj.) Vatic

I’m 
Maybe I can’t speak for everyone with chronic illnesses, but I know that I find myself trying to predict my “inevitable” future all of the time. I say things like “well I know my head will be really bad this weekend” or “I’m sure I’ll be feeling crappy still” etc. everyone always says “don’t think that way.” It’s a lot easier said than done for someone who has seen the same headache patterns continue for years now. 

But even though I don’t always do it successfully, I do try my best to not think so negatively and I try not to predict how I’ll be feeling in the future 🔮

The Most Typical of Mondays

Yesterday was a test of my patience, perseverance, and temper. What started out as a classic “Monday Mishap” escalated into a “Monday Mayhem.”

I experienced those typical “ugh” moments that everyone faces pretty often-losing your wallet (temporarily, thankfully), dumb drivers on the road, timing mishaps and office troubles–but there was one segment of my day that just really set me over the edge.

While I’ve been making some progress with my headaches and narcolepsy situation, I’ve only seemed to take numerous steps backward in my journey with food allergies.

After ending up in the ER two weekends in a row, I’ve been eating really “safe” foods because it’s nerve-wracking to eat when you aren’t 100% sure what your food allergies are. So yeah, the anxiety is continually on the rise. So I did what any normal person would do (after a year…whoops.) I made a follow-up appointment with an allergist–optimistic that the doctor would be able to ease some of my anxiety, answer some of my questions, and bring even a tiny bit of peace to my mind. Yet, I got just the opposite.

I’ve seen my fair share of doctors and I’ve seen a few who I didn’t exactly see eye to eye with regarding treatment plans. However, I’ve never seen a doctor who made me feel so belittled, frustrated and generally pissed off before. He looked at me like I had ten heads when I asked him questions and told him things other doctors have told me. For reference, I’m very new to the food allergy world. It’s not like I’ve had a peanut allergy my entire life and know how to manage it–no I recently developed a seafood allergy–which he thinks is not even possible (what?) He spewed his BS at me, shook his head like I had told him I got my information from “The Onion” rather than from accredited doctors, and sent me on my way to get a blood test for only crab and salmon (to my knowledge, there is other seafood out there, but what do I know right?) Times like these I wish I had been ballsy enough to tell him his word meant nothing to me and walked out, but I politely left the office and went to go get stuck by another needle. (although the guy who took my blood was awesome, so super grateful for that. I’ve never had such a painless experience getting blood drawn. props to him.)

I understand that there are times when people have bad experiences with doctor visits. However, for spoonies such as myself who see doctors more often than they see most of their friends, it’s extremely frustrating. It wasn’t so much that I was sad, I was just genuinely pissed off at this guy. It was a waste of my time–and spoonies also know how valuable time spent in a doctors office is when we’re trying to find answers.

I sat in my car afterward cursing the doctor wishing I had told himself to stick his handshake where the sun don’t shine, until my dad kind of set my mind right. He made me realize that there’s really nothing to cry about. I’m allowed to be pissed off, but I have to be able roll with the punches. I have to be able to take the annoyances and learn from them. I have to try to find even the tiniest positive thing from the experience and move on to what’s next.

We’ll all have days that make us want to break things and scream to the skies yelling “Why me? What did I do in a past life to deserve this shit?” But at the end of the day, we can’t change what just happened. We have no control over what and how much gets thrown in our path. We do, however, have control over how we handle those days. We can throw in the towel and walk away cursing under our breaths. We can rage until someone fixes their wrongdoings brought upon us. Or, we can take a deep breath, calm ourselves down, figure out the next step and move forward. We can gather our patience, grab a hold our temper, and persevere on.

It’s not the destruction that’s tearing you down that will define who you are or where you go in this life. It’s how well you step over the rubble and walk through the fire.

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Chronically Grateful Day 17: What Major Lesson Have You Learned From Living With a Chronic Condition?

 
After close to 10 years of dealing with my chronic and exertion headaches, I have learned that I truly can do anything but not everything. I’ve pushed through terrible headaches during fastpitch tournaments in the blazing heat 🔥, hiking miles up and down a mountain🏔, working a full time job💻, and smiling when it seemed impossible. After all that, I know I can do anything.

However, after having to quit playing the game I loved, skipping the group hiking trips, calling in sick to work sometimes, and often missing out on some of the adventures and activities my friends have planned, I know that I can’t do everything. I’ve learned to prioritize my health so that I don’t push myself when I know it would only lead me to feel even worse. I’ve learned that my headaches come during times I find inconvenient and disappointing, but I know that when its all said and done, I need to look after my health before all else ☝🏼️. It was a lesson learned after much stubbornness and denial, but it’s one my body thanks me for now. 

Chronically Grateful Day 17: What Major Lesson Have You Learned From Living With a Chronic Condition?

 
After close to 10 years of dealing with my chronic and exertion headaches, I have learned that I truly can do anything but not everything. I’ve pushed through terrible headaches during fastpitch tournaments in the blazing heat 🔥, hiking miles up and down a mountain🏔, working a full time job💻, and smiling when it seemed impossible. After all that, I know I can do anything.

However, after having to quit playing the game I loved, skipping the group hiking trips, calling in sick to work sometimes, and often missing out on some of the adventures and activities my friends have planned, I know that I can’t do everything. I’ve learned to prioritize my health so that I don’t push myself when I know it would only lead me to feel even worse. I’ve learned that my headaches come during times I find inconvenient and disappointing, but I know that when its all said and done, I need to look after my health before all else ☝🏼️. It was a lesson learned after much stubbornness and denial, but it’s one my body thanks me for now.