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Raising Awareness About Life

Nocturnal Musings #20: Junk

Nocturnal Musings #20: Junk

March 30, 2017 ribbonrx Comments 0 Comment

No sleep for me. I’ve turned nocturnal again recently. But that’s not the main reason I’m awake right now.

I was awake for 30 hours straight the other day. No idea why, I just didn’t want to sleep. So yesterday I then slept for 20 hours. This got me doubly dehydrated, despite drinking a total of a liter of water throughout the day during my brief awakenings. (Although now my body laughs at such a puny amount of water!) I’ve now been awake for eight hours, but still feel awful. It would probably be dangerous for me to go to sleep now without being fully hydrated. So I’m awake still, trying to catch up.

Staring at the wall.

I’m in the middle of multiple books, yet don’t feel like reading any of them. I read multiple books at once because I need genre variation, even within a single day, otherwise I get distracted. It’s a rare book I can read without getting at least mildly bored with it and then distracted by another book. I never used to be that way until a few months ago and I don’t know why it started.

Wanting to cry. I got a bit of a sniffle in earlier, but I need a meltdown soon. Yes, need it. I’m bottling up too much right now.

My first surveillance MRI is in three weeks, since I’m already almost seven months out from my brain tumor removal. I’m of course worried about recurrence. It happens to 30% of people who have this surgery, so why not me? I wasn’t really thinking about it until I got a phone call yesterday stating the MRI was authorized by insurance. Now I keep thinking back to what my neurosurgeon said about those markers on my tumor and what it might mean. I’m sure it’s nothing, I’m sure there will be no recurrence…but with everything that keeps happening to me, why shouldn’t there be?

I have an appointment with my cardiologist next Friday to discuss starting Florinef for POTS. It may not even work. Or it may work for awhile and then stop working. Or it may work but I’ll need to stop taking it because of it making my potassium too low (I sense very frequent blood draws in my future…) These are the situations most other people have described to me. It seems it actually works in very few people. Terrific.

Isolation. I’m used to it. I prefer it now, rather than being around people. I don’t want people to see me like this. People who used to think well of me (maybe?) who I never hear from anymore. Maybe that’s why, I don’t know. They’re too busy for a sick person in their lives when they have their own healthy and happy lives to live. And I don’t want to interfere with that.

What is this mess? Good grief, I can’t even write coherently. I have things I want to say and I can’t say them because I can’t think long enough to get my thoughts out before they fly out of my mind. BRAIN FOG, I HATE YOU.

I can’t do this anymore. I should stop this blog. I have nothing of use to say anymore because I can’t think. I’m so much better than this. And I can’t…I just can’t. Everything has been taken away from me and now I’ve lost my ability to write. All I want to do is write and I can’t…

Now I’m finally crying.

?ribbonrx

 

 

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Gray for the brain, Turquoise for dysautonomia
blogging, Books, brain fog, brain surgery, Brain tumor, friends, Heart, invisible illness, medical, orthostatic intolerance, postural orthostatic tachycardia syndrome, POTS, Reading, writing

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0 thoughts on “Nocturnal Musings #20: Junk”

  1. Sam says:
    March 30, 2017 at 6:00 am

    So honest & raw & although our medical journeys are different I found myself feeling as if I was reading the musings of someone who I was walking alongside, a friend who truly understands. Thank you for sharing so genuinely xx

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    1. ribbonrx says:
      March 30, 2017 at 7:22 am

      Thank you for your kind words, Sam. It’s encouraging to know that someone else understands, even though, as you said, our journeys are different. ?

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  2. Kirsten A says:
    March 30, 2017 at 9:28 am

    “Isolation. I’m used to it. I prefer it now, rather than being around people. I don’t want people to see me like this. People who used to think well of me (maybe?) who I never hear from anymore. Maybe that’s why, I don’t know. They’re too busy for a sick person in their lives when they have their own healthy and happy lives to live. And I don’t want to interfere with that.”

    Me too. It’s also because they just don’t understand, and it’s not their fault.

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  3. chronicallydannie says:
    March 31, 2017 at 12:49 am

    I’m right there with you with brain fog impairing the ability to write. I don’t think I’ve written anything I’m truly happy with in months, if not years. But that doesn’t mean either of us should give up. <3 Write anything, even if it doesn't make sense or if it's complete gibberish, because sometimes it's the only thing that makes me feel better.

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