Box of Dreams

Good Morning, Lovelies!

As you know, I’ve just moved into an apartment for mobility reasons. While putting things away in their new, proper homes I’ve come across things that were just heartbreaking to see again.

No, I’m not talking about old photographs or home movies.. I’m talking about my Teaching Portfolio, Flute, Kids Books, and more.

These things from a life I thought I was going to have but is no longer in view. These artifacts are now in Courtney’s Box of Dreams… hidden far beneath bins in the back of my (walk-in!) closet.

When I was in grade school my best friend was in the school’s band so I decided to try out for it and really began loving the flute. I loved it so much my mom bought me my own flute! Things were going well with the flute until cancer kicked my butt and I was no longer able to play. I could never get enough breath to practice while on chemotherapy and when I rejoined my classmates for year 2 of high school the band teacher was not interested in helping me catch up to where I needed to be. I was so disappointed and now the flute is buried in my box of dreams.

Along with my flute is something even more painful to look at… my teaching supplies. I have huge Rubbermaid bins absolutely full of teaching supplies. These include crayons, text books, curriculum books, pocket charts, bulletin boards, binders of lesson plans, stickers and so much more. I ended up giving a lot to my sister who is an Educational Assistant, but it breaks my heart beyond words. This was a career I worked so hard to achieve and now my thousands of dollars worth of supplies are of little use to me in this condition.

All of my Educational Assistant supplies are buried in drawers. I’m not sure why I hold on to them when I am painfully aware that I will never be able to do that job successfully again. My back just won’t allow for it; but I can’t give them up. Working with kids with special needs is my passion, beyond anything else.

So what do I do now? Wallow in my broken dreams? That doesn’t sound like me.

Instead, I am creating a new passion. A new dream. Courtney’s Desk of Dreams, if you will.

In our new home I am getting my very own desk and on that desk I will write. I will colour. And I will do something I haven’t mentioned before now.. I will Vlog!

Once my precious desk is set up exactly to my specifications I will begin Vlogging! This is something I’ve never done before and I am extremely nervous about the situation but also thrilled and excited! I’ve never so much as posted a video on YouTube before so this is bound to be an interesting experience for us all!

It’s not about wallowing in what could have been. It’s about making the choice to find a new passion and a new dream. And you are all part of mine!

Thank you for being my purpose! Thank you for caring enough to read my words and connect with my feelings!

Thank you for always being there for me and helping me see what I can do instead of focusing on what I am no longer capable of.

And if you ever need anything, please let me be there for you too!

Love,

Courtney

 

 

***** This cover art is done by The Psych Scrivener*****

Breaking Up with my Make Up

I feel like I’ve been in a little writing rut as of late. So many things have been happening and I didn’t know if I should share them, or even how to go about stating the mile-a-minute thoughts in an eloquent way.
Nevertheless, I have things to say so I’m going to go ahead and just say them.

Firstly, check out the Song of the Week section for a pick-me-up chosen by my husband! If you like it, go ahead and comment or send me an email at chronicallycourtney@gmail.com!

In effort to speed through the changes that have been happening lately, I will bullet point what I can!

  • I got kicked off of my Long Term Disability Benefits but am fighting it! I have heard from a bunch of other Spoonie folks who unfortunately have been in this situation and I thank you for your words of support!
  • We are MOVING! And by moving, I mean we get the keys tomorrow! We are moving from this three floor townhouse into a beautiful apartment building where we are on the FIRST floor with easy access to the doors, laundry, and lounge room. There is also an indoor saltwater pool on the premises! So excited! But as you fellow spoonies know, this is an exhausting and extremely taxing process on our bodies. All for the best, though!
  • My toe surgery is over but now I feel like there has been a complication. I revisit the surgeon next week so I’ll keep you posted on that.

Now on to the real post….

We have been packing for a while now, clearing out the house of all the things we no longer need or will have room for in the new place, and it’s been a process to say the least. It’s always hard to pack when you’re still living in the place you’re packing! Some things are easy, like I could pack two out of my three drawers of panties (I know, it’s out of hand), but some things were harder to box up. The hardest being my gigantic makeup bag.

If you’ve been following my journey for a while I’m sure you’re no stranger to my relentless selfie taking and posting. As obnoxious as it may seem to my family (I’m looking at you, Michael), it is how I/we chronicle our days/hospital visits/weird reactions or symptoms/new makeup techniques/let the world see how gorgeous we are.  My husband can point to the exact selfie spot before and after I bought my contour kit.

These illnesses take so much from us; more than anyone could ever understand who isn’t in this position themselves. Dying my hair, piercing my ears/nose, getting new tattoos, buying cute leggings/pajamas, and doing our makeup all fancy is how we control our bodies when all other control has been taken away. I can not control when my stomach decides it didn’t like what I ate. I can not control the weight gain from meds when my back makes exercise near impossible. I can’t control when the misophonia will hate a particular sound. I can’t control what textures are tolerable. I can’t control what part of my body will hurt when or how to make it stop. Our lives seem to have been ripped apart before we even knew what was happening.

It makes sense that I’d hide behind these things. And I do. I completely admit it. Before my body got torn apart I was tattoo free with limited piercings and natural blonde hair. I currently am sporting 7 tattoos (2 more happening next month!), 11 piercings and purple hair. I also have more makeup than one person could think necessary. I hide my up-and-coming double chin with clever contour tricks and hide the pain behind killer smokey eyes. It’s the mask I show to the world. But it’s packed in a box now. Purposefully.

I feel the hairs on the back of my neck stand straight up as I think about leaving the house tomorrow with my makeup packed in a box I can’t identify. I feel the anxiety mounting higher and millions of butterflies in my stomach (not the lovey ones). I feel panicked. But I will brave the world tomorrow, fresh faced and ready. Not hiding, but open and prepared to show my true self as I go from one appointment straight to pick up the keys from our new place!

Who knows, this may just be the best thing for me. A little break up from my makeup. Even if it is anxiety inducing, it is good to let my skin breathe every once in a while, right? But don’t fret, my pets, I am in no way breaking up with my makeup for anywhere close to good. As soon as that box is unpacked  I’ll be back to my selfie taking self in no time!

Do you have any things like this? What is your mask?

Love,

Courtney

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New rook piercing in my ear and full on smokey eye

 

Makeup free
Makeup free

 

 

It’s Just Pain

Good Afternoon, Friends!
Please check out the Song of the Week for an updated weekly anthem!

It’s just pain, I whisper to myself again and again.

It’s just pain, I lie to myself over and over.

It’s just pain, I say as tears fall down and down.

It’s just pain, but who am I trying to convince?

If it were just pain, that might make a difference.

If it were just pain, it would be easier to explain.

If it were just pain, I could accept this burden.

If it were just pain, there could be an end in sight.

It’s just pain, but my voice is shaking.

It’s just pain, but my heart is breaking.

It’s just pain, but I know it’s not true.

It’s not just pain. It’s just me and not you.

 

It’s just pain, but it’s really not.

It’s a full on, every day, complete assault on our bodies.

And if it were just pain, it might be easier to digest. It might be easier to explain and comprehend. But it’s so much more than that, and that makes it harder for others to grasp. People have a hard time wrapping their heads around these types of illnesses because it is basically being tortured by your own body or immune system. Our bodies are killing us, pleading for us to give up whatever information they need but we don’t have it! We’re on our own here, it feels like. But we’re not. We’re joined together in this Spoonie War Zone, where it’s us against our bodies, ableists, and unkind doctors. It’s us vs them, and we’re experienced warriors. I’m so glad to be fighting this with you guys.

You’re all my Valentines.

Love,

Courtney

Finding the Bright and Shiny in the Dark and Twisty

Good Morning Friends!

I’ve already had a pretty terrible morning beginning with a migraine, that-time-of-the-month cramps, and continued by a call from my surgeon saying that there is scar tissue in my spine so I will need injections to hopefully settle it.

This has me feeling pretty dark and twisty (any Grey’s Anatomy fans?) today instead of my usual bright and shiny self! What has recently helped, however, was a suggestion from one of my Instagram friends telling me about this song called “Try Again” by Dilba. This is an artist I’ve never heard of but apparently it was a hit in Sweden and cowritten by my Spoonie Friend! Now this song is pretty uptempo and techno-vibey but the lyrics are spot on!

I hope it brightens your day, too!

It really made me dig into myself and pull me out of my “woe is me” head space.

Something that has been weighing on me lately is the notion that you can be both “dark and twisty” AND “bright and shiny.” You totally can, and I recommend it. I myself lean towards being “Bright and Twisty.” It’s healthy to be able to look at yourself and take the good with the bad (even when the bad seriously seems to outweigh the good), and be able to recognize and accept both.

Back to my Grey’s Anatomy metaphor, Meredith was never successful in being bright and shiny, was she? No. And do you know why? Because bad stuff happens.

not-everybody-has-to-be-happy-all-the-time-greys-anatomy

Meredith knew that you didn’t have to be happy all of the time to still be a well-adjusted human. You take the good with the bad and make the most of it when you can. Even if you have to fake the happy sometimes, you are still able to find joy where it is and love with your whole (dark and twisty) heart.

So how do we find the Bright and Shiny when the world is cloudy? How do we navigate the dark waters that even a Netflix binge can’t even rescue you from? I think it depends on the person.

But I will give you a (somewhat dorky, but hopefully helpful) lesson from my Pain Group last week.

This is called Thought Recording (stay with me here..)

We all have these Automatic Thoughts that are sometimes horrible and hard to shake. They seem to come on randomly at first and then can build and build over time. They can build a wall so high that you truly believe them so you cling to these thoughts so hard that it makes it almost impossible for good people or good thoughts to break through.

Let’s give an example:
Situation: I went out with a friend for lunch and had increased back pain for two days afterwards.
Moods: Angry (100%), Depressed (100%) Hopeless (90%)
Thoughts: This is hopeless; I’m never going to get better. I won’t be able to do things I enjoy in the future. My future is going to be crappy. My friends won’t bother inviting me everywhere…. etc.
Hottest Thought: I shouldn’t bother trying.

Now think for a moment… what evidence is there to support that hot thought? That the pain got worse when you did something. But what evidence is there against that thought? It was important to try something so you can learn what works and what doesn’t. The chairs were hard and uncomfortable so maybe bring a cushion next time. If you don’t try something you will miss out on things that make you happy or could help in the future. You are learning new ways to manage pain… etc.

There is so much more evidence against the thought than there is for the thought.
I know these thoughts come and they’re so believable and you don’t feel like doing this homework, but if you never take a close look at these thoughts you will not see the mountains of evidence against the hazardous ways you’re thinking.

Never forget you’re loved and supported. I promise you have at least one person on your side; me.

And you help my bright and shiny come out…. even when I’m feeling super dark and twisty.

If you have no idea what the Grey’s Anatomy references are about, I totally suggest watching it on Netflix! I could probably recite every episode. Yes, I have a problem.

Love and Spoons,

Courtney (aka Meredith).

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Spoonie Stuck in Stress

Good Afternoon Lovelies!

First, as usual, check out my Song of the Week page for some mood music to go along with today’s post.

Stress is not a friend to spoonies, which is almost comical (if it wasn’t so darn painful)because our lives are full of stressors, from doctors appointments to dealing with insurance companies. There are rarely stress-free days for people who are chronically ill.

On any given day our pain begins at a 6-8 and more than likely will escalate before anything else. If we’re staying home we are plagued by housework we may not be feeling well enough to do, trying to book appointments, possibly dealing with insurance or social aid for disability benefits, prepping for hospital stays, or trying to convey the weight of your illnesses to any number of individuals who may question the severity or reality of your pain.

All of these things make for a very unpleasant atmosphere for people who are already dealing with extenuating circumstances. I have yet to meet even ONE chronically ill person who wants to live like this. We are not beggars, fakers, or attention seekers. We are people who want to live a normal, healthy, happy life and we do not need to be questioned, antagonized or have to prove the gravity of our illnesses.

But this is a part of our lives. I’ve heard from friends that have been cruelly approached about using their parking permits or mobility aids, and I’ve heard horror stories from people who have cried themselves to sleep because friends and family do not seem to understand what they are going through.

It is an impossible feat, living this way. But we do it because it have to. Judgement and skepticism come along, part and parcel with being chronically ill. But aren’t we in enough pain? Aren’t our lives painful enough? I think they are.

So here we are. What do we do for stress? Colour. Nap. Watch Netflix. Practice Deep Breathing. And always remember that you’re not alone. You have your own built in support system with me here. I can rant, complain, and cry with the best of them.

Keep your cool, kids. We’re in this together.

xx

Courtney

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The Seduction of Seclusion

Good Afternoon!!

Again, I have updated the Song of the Week page so feel free to check out the newest song that is giving me strength and making me smile.

We have a different sort of life, as Spoonies. Things are not really typical for our day to day existence, therefore we are given the opportunity to adopt a non-typical perspective on life.

With this new outlook we tend to be a bit calmer and day-to-day disturbances don’t bother us too much, as far worse thing have happened to us.

Because of this friends tend to shy away from calling us to complain about their flat tire, horrible cold, or work struggles. They assume we don’t want to hear about their problems simply because, as one friend so nicely put it “[our] lives suck worse”. While this may be true it does not mean that we can’t sympathize with them or that we don’t want to hear about it. We absolutely would love to share in the good and bad things that happen to our friends; we want to help solve your issues and chat about The Bachelor, and make fun of your coworkers! We’re still us.

Another issue that arises is that our friends don’t really know how to talk to us sometimes. Our lives are so drastically different than those of our healthy counterparts. Especially if these illnesses happened in our 20’s; we lived our lives as a healthy person before and this type of change is confusing for others (and for us, too). We have changed. Our lives have changed. And they don’t know where they fit in in our new lives. And it’s hard for them to feel like they’re rubbing their healthy, happy lives in our tired, sick faces. I get that.

With this in mind, some days the seduction of seclusion is so strong that it overpowers me.  I want nothing more than to curl up in bed and isolate myself for days on end. Knowing that the rest of the healthy world is out there, enjoying their lives, going to work and running marathons is depressing. Looking out the window on sunny days while I can’t get myself out of bed is depressing. Moving to an apartment and out of this house because I can’t walk up stairs is depressing. Seeing Snapchats of my beautiful friends enjoying their lives is depressing. And it’s nobody’s fault. But it gets to me. I will definitely admit that. And when it does, I am best friends with seclusion. A self imposed seclusion because I feel like no one understands what it’s like and I want to wallow in this.

But I thank YOU. Everyone who is reading this and wanting to connect. YOU are what brings me out of my seclusion.

Whenever seclusion tries to bring you down, think of me and crawl back out. Or send me an email and let me know how you’re feeling and I’ll crawl down there and be secluded with you 🙂 We’re all just walking each other home.

chronicallycourtney@gmail.com

 

me being selcuded
me being selcuded