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Oh The Things You’ll Miss

I’m Sorry!
Today’s not your day.
You’re not going anywhere!
Sit down and stay right there!

You have brains in your head.
That much is true.
But brain fog makes you doubt your IQ.
You’re on your own. Yet you need assistance.
This may be quite a sad existence.

You’ll look at Facebook posts from friends,
And see how their fun never ends
Their lives seem full of choices and opportunity
While yours is filled with immune system mutiny.

And you may not find any common ground
With people you used to hang around
Your life has been changed from the norm
It is like being altered from your original form.

But not all change is worthy of despair,
Because you have gained new insights to share.

Perspectives are altered as illnesses progress,
Managing medications and appointments in excess.
These allow you to grow in ways you couldn’t have expected,
A new experience with every hospital band collected.

And then your heart grows and grows
With each new spoonie you get to know
Ask questions and share your tale,
Of illness woes and medical fails

OH!
THE THINGS YOU’LL GAIN!

You’re on your way to chronic success!
You now have medical aids and Netflix to obsess!
You’ll join the ranks of chronic warriors
who never turn down a fight!

You won’t always enjoy this life,
You’ll cry tears of pain, exhaustion and fear..
But know you’re not alone in this battle,
Whatever you are going through, we are here.

The things you’ll miss are plenty,
From parties, concerts, and plays.
It seems unfair because it is.
But this is the chronic fighter way.
It’s not always the most fun, that’s for sure.
But what we lack in fun, we make up for in heart.
Sheer will, determination, sense of humor, and hope for a cure!

 

My revamped version of Dr. Seuess’ “Oh The Places You’ll Go”

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My name is Courtney and I ruin parties.

Good Afternoon, Friends!

As usual, please check out the Song of the Week page for a rockin’ good tune!

Back to the good stuff, now.

Hi,

My name is Courtney and I ruin parties. I don’t do it intentionally. I don’t mean to draw attention to myself when I need to move because the pain shooting down my legs is unbearable. I don’t drop my cane on purpose so people feel sorry for me. Trust me, the pity is the absolute worst. I don’t leave early to be a buzz kill, and I certainly don’t avoid social gatherings because I’m a loner or a snob. My reality is just different than yours.

I don’t want to miss your wedding or baby shower, I would love to be there to celebrate these moments.
I don’t want to miss concerts or plays, these were my favourite things in the whole world.

The truth is that it kills me that I’m not able to attend places where my walker would be an inconvenience and I hate being the girl who has to call ahead to check for accessibility. The truth is that it’s embarrassing to constantly have to alter the room set-up for optimal comfort, and even then I have to leave earlier than everyone else due to pain, discomfort, or other health related reasons.

Chronic pain and illness makes me stick out like a sore thumb as I limp around and my eyes well up with tears. This does not feel like the girl I was meant to be, but it is the girl I am. I try to make the best out of every situation, but when awkward seating at a restaurant causes me to stand to finish my meal or my legs are squished during an outing with family, I am thrust back into the harsh reality of these illnesses.

I don’t want to rush people into finishing a meal they’re enjoying, or for people to feel bad as they see the discomfort on my face. This is my reality and as much as I try to hide it and make it not so, you are part of this reality also and for that I could not be more sorry.
So if I rsvp no to a future Facebook invite or a proper mailed invitation, I am not trying to be rude, I am trying to spare you and your guests from this reality. The reality of back cushions, leg lifts, mobility aids, and a rattling pill case full purse.
I wish I could be the fun loving chick I once was who could close down a bar like a whiskey shooting bad ass, but this is no longer something I am capable of. Now my resume boasts such goodies as “Netflix Aficionado,” “Pillow Setter Up Extraordinaire,” and “Snack Queen.” If you’re down with that, I’m here for you. In a couch, bed, or otherwise properly comfortable seating situation.

Thank You For Your Understanding,

Courtney

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Fibromyalgia Awareness Day!

Hello Friends, Family, Acquaintances, Awesome Readers,

Before I get into it, please check out the Song of the Week page for an awesome, fighting tune!

I am sitting here with throbbing shoulders, swollen fingers, and an aching head because what I’m about to write needs to be written.

I have fibromyalgia. It is not my only diagnosis but it is the most debated of my illnesses. I’m very lucky that I have an amazing team of doctors that believe in my pain and chronic illnesses enough to diagnose and attempt to treat said conditions. That being said, I know so many friends around the world who are not so lucky.

I have rheumatoid arthritis and because of that I already had a rheumatologist to diagnose my fibromyalgia. If I did not already have a specialist I wonder how long I would have been waiting for that diagnosis. My guess is I’d still be waiting, in agony, for someone to believe in my pain and help me. For a fibromyalgia warrior, or really any person in the world, living in chronic, debilitating pain with no answers and no treatment is not only maddening, it’s downright unbearable.

What makes it worse, is people telling you your pain isn’t real, it’s all in your head, or if you just exercise more or take this magic potion everything will be better. It is real. And there is so much evidence now to back it up that your argument is not only unwarranted, it is wrong and doing far more harm than good.

I remember the day I was diagnosed with fibromyalgia like it was yesterday. I remember what I was wearing (purple shorts and a white and purple t-shirt), I remember the doctors office and the tender point test (ouch), and where I went after and spending the rest of the day in a dumbfounded haze. What did this mean? What really is fibromyalgia?

These questions I’ve had to answer myself through experience, trial and error, and several unsuccessful treatment protocols. But I am muddling my way through it, like so many other fighters out there. And we are all in this together.

One of the things I’ve learned about fibromyalgia is how it can take one good moment and turn it into days of unrelenting pain. It can take one dedicated, hardworking person and turn them into a shadow of their former self. Everything you thought to be true completely flips upside down and you feel like you’re drowning, except nobody around you can tell. It’s absolutely isolating. But thankfully, I know I am no longer alone.

On this day, May 12th, we come together to celebrate our victories over fibromyalgia (however small they may seem to the typical person, we know they are monumental for us) and fight towards awareness, acceptance, research, and treatment. Our battle is not yet over, but united we will continue to push forward!

 

Not my photo! But So True!
Not my photo! But So True!
Not my photo! But heck yes! Fight until the end!
Not my photo! But heck yes! Fight until the end!

 

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Someday

Good Afternoon, Friends!

Today’s Song of the Week totally changed my attitude and mindset for the day! As I’ve mentioned before, Rob Thomas (the lead singer and writer for Matchbox 20) has a wife who lives with a lupus-like condition so he has written several songs about what it is like watching his loved one in pain. Her Diamonds is a beautifully amazing song that I posted a while back, but today’s song (Someday) is more relatable and inspiring for spoonies and non-spoonies alike! That being said, it’s time to live a life you love!

As a chronic illness warrior so many things are out of our control, including seemingly simple day-to-day tasks like bathing or even getting out of bed. We can resign ourselves to despair, because that’s the type of existence chronic illnesses expect of us, or we can fight back. Now, fighting back when you’re physically unable to get out of bed may seem ridiculous and like an outrageously tall order, but I don’t mean literally dukes-out fighting. Attitude is key here, folks.

Here is the first verse to Someday:
“You can go
You can start all over again
You can try to find a way to make another day go by
You can hide
Hold all your feelings inside
You can try to carry on when all you want to do is cry”

Now if that isn’t a spoonie anthem, I’m not quite sure what is. I feel like we so often are dragged through these days and they begin to blur into one another. Endless days of pain and medications, appointments and blood draws, sleep and insomnia until we have forgotten the day or month or even year. We carry on and on and on.

Here is the chorus:
“And maybe someday
We’ll figure all this out
Try to put an end to all our doubt
Try to find a way to make things better now and
Maybe someday we’ll live our lives out loud
We’ll be better off somehow
Someday”

Now, we may never figure any of this out, but we can live our lives out loud. We can make our voices heard. We can support one another and learn from one another. We will likely never understand these illnesses or be able to look into what the future holds, but we can make it through one day at a time together.

Here is the bridge:
“Cause sometimes we don’t really notice
Just how good it can get
So maybe we should start all over
Start all over again”

We get so lost in these illnesses that we can miss the real beauty in the world. Try and watch a sunset or sunrise every now and then. Try and look up at the stars in the sky. Hug someone you love. The little pleasures in life really put things into perspective, I’ve found. Michael and I grew up in the county and we love going back to see the stars at night. It changes everything, even just for a moment.

So we can start over, today. We can choose to live out loud, a life we love. And we will definitely fumble and fall and fail, but what’s important is that we get back up and try again. And keep trying until our lives are ours to love and change. We control more than we think we do. Attitude is key.

We can’t control our illnesses, but we can control how we live with them. That’s much easier to do together.

Yours in battle,

Courtney

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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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Starting Out Spoonie?

Tips and Tricks of the Trade From One Spoonie to Another

Good Morning(ish) to you!
As always, give the Song of the Week a look at for some spirit lifting or good time tunes.

Before I knew what the term “spoonie” meant or the significance of spoon reservation, I was a free wheelin’ fun lovin’ University student. I worked full time while studying course overload semesters and enjoyed many a fun night out with my  girlfriends. Life was my oyster, so to speak.

It all came to a halt when chronic illnesses began to take over my body. I was no longer in control and the career and future I had planned on was not possible anymore. I felt lost. I felt utterly alone and scared. I began having panic attacks for the first time at 18 and had been free of them for years until the horrifying loss of bodily control saw them raging back, more powerful than ever. After what felt like decades of suffering, thinking I was the only one in the whole world who drew the short stick in life, I began a Tumblr blog to share my thoughts with whomever would listen. Not knowing what to do with Tumblr at the time, I eagerly searched for other blogs to follow and typed in “chronic pain”. This is where I first saw the word spoonie. Immediately I recalled hearing Christine Miserandio’s The Spoon Theory years ago and before I knew it I was YouTubing it again with new, desperate eyes/ears. Tears began streaming down my face as I connected with the words that I had struggled to find for so long.

Whether or not you relate to The Spoon Theory (some people simply do not like the comparison and have found other thoughts or theories they connect with more which is absolutely wonderful!) we tend to use the #spoonie name to find one another among the different Social Media channels. After my tangle with Tumblr (where I still occasionally blog/post/creep) I became quite obsessed with Instagram, and from there I began this website! I flirt with Twitter a bit and am working on connecting with every spoonie I can find! Spoonies stick together!

So You’re a Spoonie. Now What?

Once I found this community, the whole world changed. I found people who got what I was going through! I wasn’t alone in my “poor me, my life is awful” world anymore! I met people around the world who had a variety of illnesses and who were kicking major butt! My spoonie friends are strong as hell and more supportive than I can even say.

Six Steps to Spoonie Success

Step #1 when you begin to relate as a spoonie, find your people, find your tribe! Having this support is vital. They will help you in more ways than you can imagine. They will share their own tips and tricks and encourage you on your medical, spiritual, and emotional journey!

Step #2 is to become an advocate for yourself! I am in the process now of fighting for more referrals and getting appointment dates for doctors. It is stressful and exhausting; the life of a spoonie is not a particularly fun one as there is always stress on top of stress, but know you’re not alone! Doctors don’t always know what to do with us. It is tricky and sometimes takes years to get diagnosed with any type of illness (unfortunately), but stay on top of the doctors and fight for yourself and your health!

Step #3 is to understand that not everyone will understand your illness/es and that has to be okay. Sometimes family/friends/doctors don’t want to accept what is really happening. Some physicians don’t believe in several diagnoses (even with the mountains of evidence to the contrary). At times it can feel like you’re hitting your head against a wall trying to explain what is going on in your body, but you can choose to walk away if it gets too much. Let go of the toxic relationships and focus on the ones that support you and encourage growth. You have enough on your plate, you shouldn’t have to prove how sick you are to anyone.

Step #4 may sound silly but, find a hobby. Truly. These illnesses may keep you house bound and addicted to Netflix, but you need to find joy where you can. Write, colour, scrapbook, read, do puzzles, whatever your heart desires. I tried my hand at crochet but was unsuccessful. I did Tai Chi and was not the best student. I really enjoyed my venture into sewing and would love to get back to that! Give whatever you can a go! These illnesses take up so much of your energy and mind that we need some way to express ourselves being wrapped up in the weight of our pain/exhaustion.

Step #5 Make your life as easy as possible. Change what is not good for you. I realize you don’t want to be seen with a cane, but if it does more harm than good to go without it, bedazzle a walking stick and get over it. If the stairs are making you cry in agony, make the house as accessible as you can and if that means you need to move, so be it. I’m in the process of moving to a one floor apartment now. It’s heartbreaking but necessary for my health. If you can’t bend or lift, put whatever you need within reach. These things may sound sad and just a touch pathetic, but we’re all in this together and our lives are hard enough, let’s not make it any harder for ourselves. Also, take bubble baths. Do it.

Step #6 Find some local support as well! I’ve found a Fibromyalgia Support Group in my city and attend a Pain Management Group on Thursdays. I’m also a committee member for the London chapter of The Arthritis Society. It’s great to know what is available for you in your own city/town and what supports you can access.

I hope this helps in some way! I know how intimidating and terrifying this is. It’s a whole new world but you’re not in this alone…. I can show you the world…. hahaha

Love and Spoons!

Courtney

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Imperfect Human

Good Afternoon!

I have a secret to share today….

*Deep breath*

I am human! I know this may come as a shock to you. I’ve kept my identity so well under wraps that I’m sure you assumed I was some robotic pod person until now. If you need to take a minute to grapple with this truth, go ahead and take that time now.

No? I wasn’t doing a good job hiding my humble humanness?  Shoot.

In case I was fooling you, I am in fact a human. I have good days and a lot of not-so-good days. That’s what ultimately connects us all. I find it hard to really create a close friendship with people who fake their feelings. I’m not all about that. I want to see the truth, the vulnerability in people. People who can own their faults as well as their strengths. Great friendships are bonded on these.

I ache to show nothing but my strength, but then why would you want to read what I have to say? I’m not comfortable with being deceptive in that way. Nobody wants to hear from somebody who is lying about living a perfect existence, so far removed from your (and really, their) own reality. It is fun to watch and look up to celebrities but I don’t feel any sort of relatedness with them. I do feel related and connected to you, my beautiful reader and friend!

The truth is, I cry, I scream, I wallow, I toss and turn under TENS machines and heating pads trying to find a comfortable resting position.
The truth is I have trouble getting up from a chair, or a toilet, or out of the car.
The truth is I need a nap after applying my makeup because, while fun, even that exhausts me now.
The truth is sometimes I hate this life and everyone in it (except for you, obviously).
The truth is I am terrified about 90% of the time.

But I’m only human. And so are you. And while we are all beautiful, brave, and strong as all hell, we are only human. And it’s okay to admit that to yourself and to other people. Don’t try and do more than you can do. Don’t risk your health or well being to prove that you’re “normal” (whatever that even is). Love yourself enough to be yourself. We’re all living this life and doing the best we can. And it’s perfectly imperfect. And that, my friend, is wonderful.

Love,

Courtney

*** The artist for this beautiful cover photo contacted me so I can give credit for this piece! Thank You to Taii / Pokku / Glitch (at http://touzhaii.deviantart.com/art/cause-i-m-only-human-470576311) for this gorgeous piece of art! If any other artist out there sees their piece as a cover photo please contact me so I can give you credit as well! ***

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Do You Remember?

As a rule, the memory of a Spoonie can be somewhat unreliable. Brain fog is no joke, people.

But try for a moment, to remember what life was like before everything changed. Can you remember a time where you did not need help arising from bed or a chair? Was there a day you can look back on where sleep came easily and you were not nauseated?  Is there a day you can recall when life was easier than it is now? When was the moment everything went downhill?

What happened and why?

If one more person says “everything happens for a reason” or “God only gives you what you can handle” or “it could be worse” I might just lose my mind.

But, could they be right?

(more…)

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Try Hard

Before I get started, I’m going to remind you that I’ve updated the Song of the Week page! Check it out.. it’s a good one!

I can’t even begin to keep track of all the abilities and things I lack.. but I try hard.

I can’t walk, can barely stand, and more than once need your hand.. but I try hard.

Cooking, cleaning and holding a job, it’s my fault I live like a slob.. but I try hard.

Sometimes I cry and beg, plead, and scream and you remind me we’re a team… I try hard.

For days I can’t get out of bed and the pain is throbbing in my head.. but I try hard.

I can’t remember thoughts or words and this is something that can’t be cured… but I try hard.

You tell me something but I can’t recall, and you hold me up when I trip and fall… I try hard.

If you’re scared or worried about me you hold it back and don’t let me see.. you try hard.

You live each day to make sure I’m safe, and it’s hard on you to give me space.. you try hard.

You fetch my pills and bring me food to make me smile and help my mood… you try hard.

One day we’ll just be able to live, but until then my love I’ll give.. we try hard.

 

An open letter to my loving husband and friend.

Love, Courtney.

 

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Sing Spoonie Songs

Good Morning, Loves!

* Please check out the Spoonie Suggestions and Song of the Week sections to see some new, updated posts! *

On my Tumblr blog I began editing these Disney songs in a Spoonie way! People have responded pretty well to them so I wanted to share them on my own domain!

 

  1. I’ve got doctors and meds a-plenty
    I’ve got canes and braces galore
    You want mobility aids?
    I’ve got twenty!

But who cares?
No big deal
I seem fine

I wanna be where the people are
I wanna be, wanna be them dancing’
Walking around on those – what do you call ‘em?
Oh – feet

And ready to know what the doctors know

Ask ’em my questions and get some answers
What’s this pain and why does it – what’s the word?
Hurt?

When’s it my turn?
Wouldn’t I love, love to explore that life out these walls?
Out of the beds
Wish I could be
Part of that world….

                                                             My version of “Part of Your World” (more…)

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