Spoonie vlog #1 up on my channel now!

Hello my darlings! If you have ever wondered what it is like to live with chronic illness when you have busy weekend plans, than check out my new vlog on my Youtube channel! You’ll get to see what happens when my illnesses begin to act up and affect the plans I had made!

Sliver of Hope

It feels like the darkness is engulfing me

I try to scream, but only a muffled cry is heard 

Pain floods my body

Demons torment my mind

I feel numb and empty

Overwhelmed by the world around me

“Everything is just too much” I say over and over

As I sit on my bed in tears

The anxiety in me is strong

Causing my heart to race and my body to shake

Lately I feel tense all the time

Always on edge, as if expecting something bad to happen at any moment

The anger inside of me growing more and more

Causing me to lash out at the ones I love for no reason of their own

I feel like a ticking time bomb, just waiting for the tiniest thing to happen so I can blow up

My patience so thin anything has the ability to cause my borderline rage to surface

My inner child just waiting for a chance to unleash her pain and anguish on anyone near her

And most days, i’m powerless to prevent or stop the damage I know she will cause

It feels like i’m suffocating on the air I breathe because with each breath I take my chest aches

Waking up in the morning with pure dread, wishing I could just close my eyes again and go back to sleep

But even sleep doesn’t bring rest

No, sleep brings nightmares over and over

Realistic ones that make it hard to distinguish if this is real life or just a dream

Often causing me to wake up suddenly, yelling out for help

Never allowing me to wake up rested the next day

But instead tired and drained of energy

Energy needed to get through the day

My PTSD is also strong

Images flash in my mind of things I don’t want to remember

Making me cringe and suddenly feel overwhelmed with fear 

In an instant, it’s like i’m transported back to those moments

Feeling all the same emotions I did during that time, emotions I don’t want to ever feel again but do over and over 

I shake my head, begging the images to leave, but they don’t

Sometimes my mind shows me images of what could have happened instead, which is always worse then what I experienced

These images often make me cry out and tremble

Leaving me paralyzed for however long they decide to play inside my head

Like a horror movie I never asked to see but am forced to experience on repeat

With no stop button in sight to make it go away

I can feel my depression slowly start to creep inside of me

That feeling of hopelessness getting stronger and stronger each day

I feel miserable, hating the life that I am forced to live due to the illnesses that grip my body and soul

I feel disconnected from not only the world around me but from myself

Looking into the mirror and having no recognition of the broken girl staring back at me

Watching my wedding video with tears streaming down my face because I have no emotional connection to that happy girl in a wedding dress

Remembering that was the best night of my life but it feeling like it never even happened to me

I am lost, begging for someone to show me the map needed to get home but knowing no map like that exists

Only I have the ability to create that map and right now, I do not have the tools to do so

That creative spark inside of me that once shown so bright has grown dimmer and dimmer

With each trauma, each illness stomping out a piece of the light in my soul time and time again

Writing, once a safe place and therapeutic tool, now seeming so hard to even do

It’s like the once fluid connection from my mind to my hand has severed itself and no matter how hard I try, the ideas just won’t flow to the page with ease like before

Instead, I struggle to come up with flowing sentences and paragraphs, my mind feeling jumbled 

The imagination in me that once created novels of greatness

Basically destroyed by the harsh reality that is life

Causing my novel ideas and half written stories to remain just that when I once believed they could become so much more

My only true escape is music

Music has always been something that allowed me to disappear from my world

I lean on music more now than I ever have before

Lately, Hamilton has become my number one destination

Constantly listening to and now even watching this truly unbelievable show

I listen to Lin’s poetic words being rapped and sung by angelic voices and in those moments, my mind is at peace

The usually loud voices in my mind that constantly project negativity are drowned out by music and words of pure genius

What it must be like to have a mind so brilliant it can create something so unique out of nothing else but history

But as I listen, I also think of Hamilton’s story

Longing to have that kind of drive, that kind of determination to become someone great

To be able to turn my pain into something beautiful, something that can help others

I ask myself, have I thrown away my shot?

Is it too late to become someone, to make a difference in this world

Or will I eventually die being known as the girl who was always too sick to function

I’m tired of my mind torturing me 

I’m tired of my body always being full of pain

I’m tired of constantly being sick

Of having to cancel plans with friends

I’m tired of this life

But the sad truth is, no matter how many times I try to change things

I always fall back to this spot

I get to the top only to be there for a few moments before it’s down the rabbit hole again

Despite all of this, I still have a sliver of hope that one day, things will be better and will stay better

That I will make something of myself 

That people will know my name and my story

That young girls and boys will be inspired by my determination to survive when I had every reason in the book to give up 

That my failures thus far will pave the way to the biggest triumphs of my life

That Tom and I will have kids and I will be a great mother to them

I hold onto that hope with shaky but firm hands, even on the days where I desperately want to let go because giving in would be so much easier then fighting

But I know its that hope that keeps me going, it’s that hope that keeps me alive

So I hold on, and I will continue to hold on

Because despite everything, despite how shattered I may feel

I know my life is special and worth living

Life is a fragile but beautiful thing and even when the darkness is overwhelming

There is always a small flame of light illuminating within

At times, it may be hidden or harder to find but it is there

Guiding you, providing you with hope, even if you can’t see it

My 2019 Fall Bucket List (Part 1)

Autumn is officially in the air! The temperature is dropping, the leaves are slowly falling and almost every store you walk into you’re met with Fall & Halloween decor. Fall has always been my favorite season. I think one of the biggest reasons why is because Fall is the kickstart to the best time of the year! Once it’s Fall, I know that soon it’ll be Halloween, Thanksgiving and then finally, Christmas!! Fall is also my favorite because there is always so many fun activities to do during this season. If you’re someone who suffers from chronic and/or mental illness though, sometimes it’s hard to truly enjoy all Fall has to offer. I know for myself, if it’s not because my body is in so much pain that it’s hard for me to really move, my anxiety takes hold of me a lot and causes me to be too scared to even want to leave my house. This often ends with me missing out on making so many memories. With how my health has declined this year, the fear of missing out on all my favorite season has to offer is strong. But I refuse to let my illnesses ruin my Fall. So I decided to write down everything that I wanted to do this Fall that I believe my body will be able to actually do. I then broke up that list into three different sections based on the energy level I feel is required to complete that activity. I think one of the most important aspects when it comes to doing activities with chronic and mental illness is thinking of ways that will help you to be able to truly enjoy those moments without pushing yourself too far. By dividing my list, not only does it help me to prepare for certain activities but it helps me to better plan out my Fall so i’m not doing two high energy activities too close to each other. This will hopefully prevent me from burning out my body and help me to actually enjoy this beautiful season. Below, you will find my entire list but the focus of today’s blog post will be on the first part of that list, Fall activities to do that require low energy. In the upcoming days, I will do the same thing but with the next two sections so stay tuned for that!

My 2019 Fall Bucket List

Low energy 

  • Have a Halloween Movie Night
  • Have a Scary Movie Night
  • Bake Halloween Pillsbury cookies
  • Read 2 scary and/or Halloween themed novels
  • Dress up in a cute but comfortable Halloween Costume
  • Listen to Halloween themed music
  • Create a Gratitude Jar

Medium energy

  • Carve Pumpkins
  • Decorate for Fall/Halloween
  • Bake a Pumpkin Pie
  • Go for a Fall foliage drive

High energy

  • Go Pumpkin Picking
  • Go to Fright Fest at Six Flags
  • Host Friendsgiving
  • Go to the Great Pumpkin Blaze
  • Have a Fall-themed photoshoot

As I stated above, today’s focus is on the first section of my bucket list, low energy Fall activities. I wrote low energy instead of no energy because, let’s face it, when you live with chronic and mental illness, even just breathing requires energy. For me, a low energy activity is an activity that is done within your home that does not require a lot of movement. So with that being said, let’s jump into each activity in more detail, as well as provide all of you reading with some tips to make these activities even more enjoyable!

  1. Have a Halloween Movie Night

One of my favorite things about Halloween time is watching Halloween movies! I absolutely love watching all the different spooky movies throughout October but this year, I want to take one day/night and gather all of my absolute favorite Halloween movies and watch them in one sitting. These movies include Hocus Pocus, Nightmare before Christmas, Beetlejuice and The Haunted Mansion. Some tips to make your spooky movie night even more perfect include:

  • Wearing comfy clothing or Pajamas (Even better if they are Halloween themed)
  • Cuddling up in a big comfy blanket
  • Drinking Hot Coco (or whatever your favorite hot beverage is)
  • Eating your favorite sweet or salty snack
  • Watching the movies with a friend or significant other (everything’s better with a buddy!)

Having a Halloween movie night is one activity on this list that I am particularly excited about because it allows me to have a nice cozy night at home with my husband while also celebrating everything that makes Halloween the amazing holiday it is!

  1. Have a Scary movie Night

Going along with the whole movie night theme, another fun idea for some is to watch scary movies during the Halloween season. Now I’m not a huge scary movie girl. I honestly usually hate scary movies and tend to avoid them at all costs. With that being said, this year I really did want to push myself out of my comfort zone and since my husband has been wanting to watch scary movies with me since we began dating, I decided that maybe now was the time. So to add a small twist to this, especially if you aren’t a fan of scary movies, you could have your significant other or a friend pick out 1 to 2 scary movies of their choice for you guys to watch. The catch is, you can’t say no. Tips to make this experience a little bit more enjoyable (and tolerable) include:

  • Wearing comfy clothes or Pajamas (Again, Halloween themed are the best)
  • Setting ground rules for what movie(s) can be chosen (For me this is no horror movies based on real life events)
  • Eating your favorite snack (Helps distract you from the terror on the screen)
  • Cuddling up with a big blanket (To hide under during the super scary scenes)
  • Watching with a buddy or significant other (Never watch a scary movie alone, plus you probably wouldn’t be doing this if it wasn’t for them)

I won’t lie, this is one activity on my list that I am scared about but it’s also something I know my husband is excited for and therefore, makes it a little less terrifying…I think..

  1. Bake Pillsbury Halloween cookies

I don’t think I am alone in saying Pillsbury cookies are some of the best cookies out there! Not only are they delicious, but the fun designs really help you to celebrate the season. Now I will admit, they can be a tad pricey but I think it’s worth the price at certain times during the year, Halloween being one of those times. This year, I plan to pick up both a package of the pumpkin ones and the ghosts ones and take one night, probably the Halloween movie night, where my husband and I make and eat them. Even though you have to bake them, I consider this to be a low energy activity because all you have to do is take them out of the package and put them on a cookie sheet. This is just another reason I love them because since they are pre-cut, it is a lot easier to bake than other cookies. I really don’t have any tips for this one because it’s already pretty simple and easy but like before, baking these with a buddy will definitely add a little extra fun to the whole thing and wearing comfy clothes is a must. 

  1. Read 2 scary and/or Halloween themed novels

I have always loved reading. For me, reading allows me to escape my reality for a little while and when your reality is filled with being stuck in bed due to pain, sometimes being able to bury myself in a book is exactly what I need to keep my spirits high. Since it is spooky season, I decided I really want to read 2 scary and/or Halloween novels before Thanksgiving. Normally, I would say before Halloween but lately, my brain fog has made reading for long periods of time more difficult so I have given myself a more realistic time frame. Again, it’s all about adapting to make things easier for you. Some tips to make this one more enjoyable include:

  • Wearing comfy clothing or Pajamas (Especially fuzzy socks!)
  • Choosing a book you’ve never read before (Though re-reading books is always enjoyable, picking something new will provide you with a whole new experience)
  • Choosing an author you’ve never read before (Again, reading work from someone new provides you with reading a whole new style of writing which could be fun)
  • Read somewhere where you can be alone and not interrupted (Few things are worse than being interrupted when you’re in the middle of a good book)

I might not be a fan of scary movies but I do enjoy a good scary novel so this is something I’m excited about. Who knows, I may even discover a new favorite book or author along the way. 

  1. Dress up in a cute but comfy Halloween costume

One of the best things about Halloween is being able to dress up in costume. For one night (or multiple nights of the season), you can dress up as someone completely different than yourself and no one is going to judge you for it. Dressing up in costumes is definitely one of the main reasons why I love Halloween so much. But often in the past, the costumes I would choose wouldn’t be that comfortable or warm. Living in New York, wearing a tight, short dress with no sleeves isn’t exactly the warmest option I could have worn. I already knew that getting a typical costume this year wasn’t really an option due to both money and also just the way my health has been. But this in no way is going to stop me from dressing up. So what are my tips for choosing a cute but comfy costume? Well: 

  • Wear a onesie (This is the option I am 95% sure I will be choosing this year. Not only are onesies extremely comfortable and warm, nowadays you can find onesies for every character or theme you can think of! Plus, when Halloween is over, you can still wear your onesie at home which makes it a more practical option and cost effective option) 
  • Don’t wear anything too tight (If your costume is too tight, you will not be comfortable and therefore, you will more than likely not be able to enjoy your Halloween night as much as you should)
  • Choose a costume that is weather appropriate (Again being too cold or too hot can cause you to be uncomfortable which will affect your night. Often with chronic illness, extreme temperature can also cause pain or flare-ups and that’s definitely no fun)
  • Choose a costume you feel comfortable in for long periods of time (Not comfortable=not a fun night)

I have known since Endgame came out that I wanted to be spiderman this year. I haven’t fully decided yet whether I will chose the spiderman onesie as my costume or purchase an actual spiderman bodysuit but either way, I know my whole body will be covered and both options will be much more comfortable than costumes I would have chosen in the past. Dressing up is something I am super excited about this year and can not wait to show you all how my costume comes out!

  1. Listen to Halloween music

Music truly is the best medicine. I would be so lost in this world if I didn’t have music in my life. One of my favorite things to do each holiday season is create a themed music playlist on Spotify to listen to throughout that season. So of course, making a spooky playlist is a must do on my list. Instead of tips for this section, here are just some songs I’ve included on mine to give you an idea. They include:

  • Anything Rocky horror
  • Anything Nightmare before Christmas
  • Thriller
  • Classic Halloween songs (Monster Mash, Spooky Scary Skeletons, I put a spell on you, etc)

Music is a way to express oneself and what better way to express your love for this season than with some spooky music. My go to places to listen to my Halloween playlist is at home when I’m cleaning and any time we are in the car. If you would like me to do a whole post about every song I’ve included on my playlist this year, let me know in the comments below.

  1. Create a gratitude jar

This activity is actually one that I won’t begin until the first of November. I had seen something similar on Pinterest and thought, with everything that has happened this year, creating a gratitude journal is exactly what I could use right about now. So basically, every day leading up to Thanksgiving after November 1st, I will write down one thing that I am thankful for. Than, on Thanksgiving night, I will open up my jar and read all the things I wrote. It’s very easy when you live with chronic and/or mental illness to lose sight of all the good things in your life. But even on our worst days, there are always things to be thankful for. Some tips I have for this include:

  • Decorating your jar (You can choose to decorate it for Fall or any other way you would like)
  • Choose bright colored paper (Bright colors just ignite more joy than plain white)
  • Really think about what your thankful for (Nothing is too little)

By creating this gratitude jar, I will be reminded of how lucky I am during a season where nature even shows us how beautiful it is to be alive.

So there you have it, the first 7 things on my Fall 2019 bucket list that require low energy. I hope you enjoyed this post and if you did, please hit that like button! If you want to see more, especially the next 2 parts of this series, please give me a follow that way you know when my posts go up. 

Alright, until next time my darlings,

Kaylee D’Ascanio ❤