Seizures. Not always what you think.

 I think everyone has had an encounter with an active seizure at least once in their life, and if they haven't, they should at least be prepared to know how to handle it. Whether it's by calling for immediate help, and/ or dispersing crowds. Not all seizures are visible though, which makes things a bit more complicated. Some, can be as quiet as the person looking like they're daydreaming, staring without actually focusing on anything, while on the inside, the person can be dealing with so much. Mine feel as if my mind goes completely blank, muscles so stiff it's as if I'm trying to walk through gelatin. When that ends, the next part is the whopper of a headache that crashes into you. A pain that lasts for hours. Sadly, there's not much that a bystander can do, except guide the person to safety, administer meds, and stay by their side until they feel like they can resume their day. 

Living with Hydrocephalus

 This condition is... complicated. We can go through what most people would consider torture, but a lot of us show no outward signs, so you wouldn't even know it. Headaches, dizziness, nausea and a whole slew of our symptoms aren't visible. When we speak up about our symptoms, it can feel like we're complaining, but then if we don't say anything, we run the risk of those symptoms escalating and having to go to the hospital.  Every patient is different. Some can have high pain tolerance, while others don't. Some can experience an increase of pain from the heat, while others suffer in the cold, etc. Our energy levels are a daily surprise. One day we might have, and the next, we might experience low levels for a week. You just never know. 

Bad, Bad Headaches

 A couple of days ago, I was hit by a Mack truck of a headache, which stung as if my brain had gotten sunburned. This pain lasted for hours, and I was reminded of the only other time I'd felt that bad. It was after one of my last surgeries, which was a big, complicated procedure, complete with massive pains. Exhaustion has been the norm for a few days, but I'm feeling a little bit better, and hope that will keep being the case in days ahead. 

New Book Idea. (No Spoilers)

  So, this is a new thing I've been working on. And another villain wanted a voice, so I had to give it to them. They're pretty persistent. Who was the first character to speak to me this time? I can't remember. I just remember the question that enclosed the entire plot without actually giving it to me. 

Hydrocephalus and Memory

 One of the many consequences of Hydrocephalus is memory loss. This is because most of the operations the condition requires is brain surgery. 

The loss can be gradual, you forget details and small bits of things, but it can algo develop into full blown forgetfulness, where you feel like you lose whole parts of your day in the blink of an eye. This can leave you feeling helpless and useless, but you have to keep going. 

Use planners, set up alarms, take pictures of where you put things so that it's less likely that you'll lose track of them. I know it's an annoying and frustrating pain in the butt. Do anything you can to help yourself.

Why is pain so difficult to quantify/categorize?

Pain is something that should be measured individually. 

While there are pain scales that help explain the varying degrees of what a person can feel, you also need to consider that person's tolerance for said pain. 

Maybe you're talking with someone that has been dealing with this pain for most of our life, and because of that, we can become used to it. But that in no way means that we don't feel it. 

When you ask us how strong the pain is, we can answer with low numbers, because we are just that accustomed to feeling that way, but if you'd ask someone that wasn't used to that kind of stress, they'd react completely differently. 

Should I....? Or should I not...?

 So, before I decided to plunge into writing, I studied culinary arts, and have yet to put that to use. I've been thinking about writing out the ideas in my notebook, and make them actual recipes. Would that be a good idea? I don't want those recipes to go to waste, and I still come up with stuff from time to time. 

My Writing Process.

I hope everyone had a good Christmas, and that you have a good New Years. I thought I'd talk about my writing process today, because it's funny and complicated, but was pretty much my go to for my first book, and now again while I write my second. 

First, I'll draft on paper, either loose pages or notebooks. 

Second, I'll "edit" on those. Multiple times. So many smudges, on the page, as well as on my hand.

Third, I'll pass those writings onto my computer to save my progress. At this stage, I add or remove things. Is this weird? 

It's fun, and not frustrating at all. I promise. 

I'm currently working on my second book, so I'm walking around with a notebook, pencil and eraser.🤣

I wish people understood...

Most of the time people look at me and see someone healthy, unaware of the pain I go through on a daily basis. Pain free days are so rare, that I can't really tell when they happen. If you look at me, you'd see that I "look fine", while on the inside, my head is likely waging war. Most days I'll look tired, because of pain induced insomnia which is always fun... 

New Story In The Works While Pushing Through

 I have a notebook where I write story prompts that interest me, so that I don't forget them, and I've chosen the prompt for my next story. (I think it might qualify as a reimagining. Maybe.) But pains don't take a break, so I've been sleeping more often than I should, and it's annoying, because I want to write. Pain is not fun. That goes without saying. Concentration also takes a backseat in these moments, which means that I can't focus on much, but I try to take advantage of moments of clarity. This story might end up being another sci-fi romance. I never expected to write anything other than romance, so it's a big surprise to me. We'll see how it turns out. 

My Book Is Officially Out For Sale on Three Furies Press, Amazon, Barnes and Noble and Chapters Indigo!

 I have been freaking out for the past couple of weeks, because after all the hard work, I finally saw the results. Let me tell you, the tears were flowing... I really hope people like it. READ ME is available in Ebook and Paperback formats.

Amazon.com: Read Me eBook : Bianchi, Gabriela: Kindle Store

Read Me by Gabriela Bianchi | NOOK Book (eBook) | Barnes & Noble® (barnesandnoble.com)

Read Me eBook by Gabriela Bianchi Kobo Edition | www.chapters.indigo.ca

Read Me by Gabriela Bianchi Paperback – Three Furies Press

Reevaluating Options

When you have a serious condition, I find that you can't cement a lot of things, and one of those is your career path. You might set out wanting to do one thing, but then your health might put the breaks on it, or it might take a slight detour. In my case the change was pretty drastic, because I started out wanting to cook, but ended up reaching for the pen (pencil in my case). Writing has helped me so much, because it has been working as a therapy for me, and it keeps my mind active. My point is... Don't think that you HAVE to decide on a career, because you don't know what life will through at you.

Today, I was brave and continued pitching my story. All while dealing with a nasty headache that hit me like a brick, and seems like it will last all day. I'm exhausted, but filled with nervous excitement. 

Wanting to vs Being Able To

So, recently I was asked if I wanted to work, and my answer was: "Yes, I do."

Well, wouldn't you know it that after said conversation, I've been bombarded with seizure after seizure. Is this my bodies way of telling me "No"? I try to rebel, but some days it's hard to even get out of bed, because I'm either in pain, or the world is spinning. SO ANNOYING...

Short, sweet, and to the point.

These Things Drive Me Nuts! (Rant ish)

So I've been having a lot of mindblanks/seizures today, which means I've felt like my head's been floating off somewhere for pretty much the entire day. It's been so stressful, especially since I want to write, but I can't seem to focus enough to get words out.... 

My brain just didn't want to cooperate today, but I hope that tomorrow will be different, and that I can actually focus on things that I need to do. For now, I'm off to float for the rest of the night.

New Developments? Opinions Welcome.

You may know that I finished my draft a few months ago, but now I have no idea what to do. I've edited as much as I possibly could while writing, and can't possibly look at my draft without deleting something integral to the plot. I need help...

So to keep my mind busy, I've started writing a new story. This one is much more of a personal project, because the main theme is Hydrocephalus. I'm three chapters in, and my MC has already gotten sick and gotten shunt surgery. The story is meant to be a contemporary romance, between a Hydrocephalus patient and her movie star best friend. I've had to dig deep to recover memories from my surgeries, to get a feel for what Danielle should go through, because I want this portrayal to be as accurate as possible. My goal is to spread awareness for the condition. 

Update 2022: this story might have changed COMPLETELY. Hydrocephalus is still involved, but it is now a scifi.

My Rough Draft Is Done!

Remember that book I've been working on? Well, after 2 years I finally finished the first phase! I'm now you going to be deep in edits, and I can't wait! I'm so happy, excited, and proud of my work, and I'm that much closer to seeing it on Kindle. It's been a tough road, and I'm not at the finish line yet,  but I see something in the horizon now, and it is awesome to me.  

You Can't Label Pain

When you live with a chronic illness or condition, most people  are understanding, but you're also bound to run into others that aren't. People that either think you're faking it, or exaggerating.

These people should be thankful that they don't have to deal with the hardships that those with conditions love on a daily basis. We may have good days, even good seasons, but unfortunately, the bad outweighs the good in most cases, and we're the ones that have to deal with it. Adding half smiles for others who just don't understand.  Chronic pain is real, even if you get a reprieve for a few months.

My "calm" months are in winter and some of autumn, and I'm virtually pain free until spring and summer. But not completely, believe me.

We may not always look to be in pain. We might just seem really tired (and believe me when I say that pain is exhausting), but we are dealing with something not everyone can.

We are tough cookies 🍪

Emotions with Hydrocephalus + Writing Updates

It turns out that when you receive many operations in your head, they can impact your mental\emotional state.

This has been made crystal clear to me, and it makes a lot of sense of you think about it. Your brain is bound to short circuit from time to time if it's been poked and prodded. This means outbursts, crying, depression, inappropriate laughter, all that fun stuff... (among others). I still haven't found a way to deal with it, except letting it out. 

As for my book, I am happy to report 155 pages and 41, 381 words.

MERRY CHRISTMAS EVERYONE

Jobs? Nope

One thing that I am so tired of us people asking me why I don't have a job. NEWSFLASH: I feel horrible on a daily basis, and when I do try to find work, I don't meet the standards for the position. I studied culinary arts because I loved it, but find my work in that field is a pain in the butt when you don't move fast enough, or when you can't exactly make snap decisions. That's one of the reasons I started to write. Besides the fact that I have stories to tell.

I need to finish writing my book, because I feel like that is what I'm supposed to do with my life. I want to inspire, and teach others about Hydrocephalus through my stories.

Fog In The Moment. Live.

So, I've previously discussed BRAINFOG in another post, but I felt like talking about it while I'm actually going through it. It came on suddenly this time, like getting slapped in the face with a leaf while walking, and hasn't left me yet.

I feel like my head is not connected to my neck, I can barely focus my thoughts, and I just can't bring myself to get out of bed. It's bad... My eyes get heavy, but I'm not necessarily tired. I guess that means my mind just wants to shut down (sleep). But sleep doesn't always help, because sometimes I'll wake up with the fog worse than it was before the nap. It's frustrating...

And the "best" part of it is that it comes with a friend. Headaches. Who stay with you after the fog clears... 

Update: The fog started clearing after 4 hours. Sometimes it takes longer.