As (mostly) usual, check out the Song of the Week page for an awesome recommendation from a lovely spoonie friend!
Dear Friend, Acquaintance, Family Member, Random Person Staring at me with my Walker, or any other person who judges me without knowing anything about me and/or my condition/s and therefore should have no opinion on my medical situation,
This letter is for you.
I usually try to steer clear of you, as negativity is not permitted in my bubble of self care, but alas, you continually attempt to pop my beautiful pink bubble.
I used to think it was easy to avoid you and others like you, but as my medical conditions make it more challenging to survive without the need of mobility or accessibility aids in public and my life revolves around the illnesses more than anything else, we seem to be at an impasse.
I have several chronic, autoimmue, life-altering illnesses, whether you believe they’re real or not. And they are, just to be clear, as years of research and medical documentation support their existence (and I’m not on all of these medications for nothing). These conditions, illnesses, horrible-things-that-have-happened-to-me are in no way fake, misleading, or caused by anything I have done. I do not choose to be ill and miss out on work, bearing children, or vacations with my husband. I do not want to use a cane or walker around the house or in public (even if they are pretty cute), because in reality, it’s all a huge inconvenience. I do not want to spend hours on the phone arguing with insurance companies, employee benefits, or disability services. I don’t want to be in agony over the sound of birds chirping, motorcycles starting, or my husband trying to hug me. This is not a fun life. But it is my life.
This is my life, and it is not yours. And just because it does not make sense to you does not make it any less legitimate. These are illnesses I didn’t even know existed until they happened to me. But now that I know they do, I am a champion for these causes and for the people’s lives they’ve affected. I do not write this letter for your benefit or mine, I write it for theirs. I write this for my friends around the globe who encounter naysayers and hurtful doubters who make their already difficult lives that much harder. Nobody chooses to live in pain, but you are actively choosing to be ignorant to it.
I’ve heard you say things like “just push through it,” or “why are you in bed still?” or “if you just keep moving,” or one of my all time favourites “if you just take this one supplement your life will be completely different” which shows me just how little you know about our illnesses. And if you know that little about them, you are in no position to comment on how we survive them. If you think that one lap around the dog park is not enough to wear us out for days, you have no idea what we’re dealing with.
I’m sorry if this is coming off harsher than I had intended, but enough is enough. If you cannot stick by us, support us, encourage us, and just generally try to understand what we’re going through, then we’re going to have to cut ties here.
Speaking for myself, I cannot push through these exchanges anymore. I am begging for compassion, and if you are unable to provide that, there is nothing left to say.
Thank you, our friends and family who have shown us unending support and love. It means more to us than we can say.
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
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.
This may sound weird, shocking, even wrong. Who thanks an illness that, from the outside (and sometimes inside), appears to have ruined their life? I do.
These illnesses have changed my life but I don’t believe they’ve ruined it. And here’s why.
Dear Rheumatoid Arthritis, Fibromyalgia, Degenerative Disc Disease, and Others,
I am writing this letter to thank you for how you’ve changed my life.
Before you I was a selfish person. I went through my life with a sort of self obsessed confidence. I was carefree and eagerly focused on my career and my shopping habits. Gossiping and drama were the center of my days while I should have been aware of the real world instead of my narcissistic universe. I would get enveloped in everything that did not actually matter.
When I began feeling pain everywhere I was angry. I know this sounds like a natural response to a body that is failing an otherwise healthy 25 year old woman, but I was filled with bitterness that was unbecoming of my prior bubbly self. I pushed through, because that’s what I did back then, not knowing that I was further wrecking my already damaged spine. My broken body fueled the drama that was my work (and home) life.
After my first spine surgery I began my Tumblr blog and found my place among the Spooniverse. I had no idea this was even a thing. I had no idea that there were so many illnesses and people like me, suffering with bodies failing young women and men around the world. It shook my egocentric self to the very core. This was so much larger than myself! Through this I realized there were people in far worse shape than I was! There were warriors fighting courageous battles with smiling faces and I was moved by their spirits.
It gave me faith that I could do that, too. I could smile through my challenges and brighten people’s lives, and open their minds and hearts. I could look outside of my own problems and dedicate my life to helping others get through their days, weeks, and months. I could support and mentor new spoonies like I was (and still am!) supported and mentored by powerful, inspirational warriors!
It was around this time when I took stock of my life. I looked around and fell even more in love with my friends and family. They stood by me through my ups and downs, my good times and bad, my selfishness and my thoughtfulness. It was their love and support that propelled me to where I am now. It was their hours spent arranging pillows and filling pill cases and attending chronic pain workshops. And if it wasn’t for them I wouldn’t be the person I am today.
Throughout this whole experience I have been changed. I never knew how strong I was before you took over my body and made it your own. You have affected every aspect of my life and altered my reality and future. I no longer know what tomorrow will bring, let alone the next month or year, but I know I will get through it. You may be trying to break me, but you won’t. I am loved and supported and cared for by people who I never would have met if it weren’t for you. You thought you were ruining my life but you have enriched it in ways I never could have imagined.
So, dear illnesses. You have changed me. And for that, I am entirely grateful.
As usual on Mondays (or Tuesdays, or whenever I get inspired!) please check out the Song of the Week page for a new addition to your feel good soundtrack!
Today, as I was emptying the dishwasher (because we have one now! Way too excited about that) and heading back to bed, I felt the horribleness of self-pity. I was trying to remember my last true “good day” and wondered when things would turn around for the better. I tried to remember every time I had that thought before. How many times do we plan for our next good day rather than make the best of what we have?
Here is where I begin. Here is where I change my way of thinking. Here is where I let go of the self pity, anger, frustration, and negativity. Here is where I alter my perception of my life and future.
This is not to say that I will never experience those feelings again. I’m only human after all. What I am working on is acknowledging those feelings and moving past them. Refusing to wallow in despair about my situation may be hard, damn near impossible some days, but I am a work in progress. Aren’t we all?
So this is my challenge. Today and every day. Make the most of the days I have, because some people aren’t so lucky. Smile every chance I get, not just for myself but for others. Love the family and friends I have, because they are the good in my life. And do what I can with what I have.
Even if I feel absolutely terrible, I want to feel the sun on my face every day. I want to experience my life as fully as I am able.
Our lives may not be what we had imagined, but they are the lives we were given. And we should fight to live them!
This past week I have been fortunate enough to be surrounded by friends and family. People that love me, care for me, and take care of me. Friends that let me (or tell me) to sit when I need to, rest if I’m tired, and eat with my medications.
Having these people in my life reminds me that nobody fights alone. We aren’t meant to. It’s biology. It’s evolution. It’s in our DNA. We need each other! “We are all just walking each other home– Ram Dass.”
Community can mean a couple of different things. It can mean a group of people who live in the same vicinity or people who share a common characteristic or trait. I am so lucky to have amazing communities in accordance with both definitions!
The people who live around me, that I’m in constant contact with, are incredibly supportive of my needs. They may not completely understand the challenges I live with, but are always ready to grab my walker/cane, pick up things I can’t, arrange my pillows in a comfortable way, and offer their hand to assist my balance. All of these seemingly little gestures are more helpful and moving than anyone could ever know.
My spoonie community, the people who share a common characteristic of chronic illnesses, is without a doubt the greatest blessing I never saw coming. I hadn’t heard the word spoonie until I began my Tumblr blog and now I don’t know how I ever made it so far without this tribe. I have learned so much about my illnesses and myself through the spooniverse and I could not be more grateful. Sharing tricks of the trade and support from those who understand has been immeasurably instrumental in where I am today.
Sometimes these communities overlap, like when I have friends and family members who are also battling chronic illnesses. Like my friend who was over this week who has suspected arthritis! Or my parents and grandparents who suffer with arthritis, ankylosing spondylitis, degenerative disc disease, and others.
Look around you right now (assuming you’re not alone), and you will find people who are fighting battles you don’t know about. Talk to them, get to know them, they are your community. Your tribe. And even if you don’t live with them, you might have common characteristics or traits to bond over. Nobody can walk this road alone. It’s much more fun to have someone to chat with along the way.
As usual on Mondays (or sometimes Tuesdays, and rarely Wednesdays), please check out the Song of the Week page for some uplifting and feel good tunes! You get a special two-for-one deal today!
I titled today’s post “The Bright-ish Side” because sometimes the other side, or what some people refer to as The Bright Side, is not always all that bright. Sometimes it’s a touch bright-er but that sounds a tad too optimistic and a little misleading. Often what I have found is that the side is more of a shade of bright-ish than bright. But nevertheless, it is the better option.
Today started rather happily for me and then quickly went from happy to not-so-happy. When I am feeling not-so-happy (or like today, various shades of angry/frustrated/sad) I try extra hard to find the bright-ish side. So, here it goes:
I cleaned the apartment, took my pup for a walk, chatted with a friend and had a wonderful few hours of relatively pain free (as pain free as chronic pain warriors get) enjoyment. When the pain decided to return full force I became frustrated. It is so maddening, having to pay for a few hours of happiness with unrelenting pain. I compared this situation to an overprotective father waiting up for his daughter who is past curfew. “What did you think you were doing going out and enjoying your life! You know better than to be happy! Enjoy being grounded for a week!”
On the bright-ish side, I got to leave the house and enjoy the sun on my face. Those hours of joy cannot be taken away, even if the pain tries to do just that. I have photographic proof that I enjoyed (at least parts of) today.
My husband sat down to do our taxes and realized a couple of things related to my disability and work forms are not accessible online so I will need to phone for them. I began panicking and my anxiety became overwhelming. I can not think of two phone calls I would like to make less.
On the bright-ish side, I have a husband to help with the taxes and friends to talk me down when I can feel a panic attack coming on.
There are times I am sure that I can not survive one more day in this much pain.
On the bright-ish side, I know tomorrow is coming and there is a chance it could be better than today.
Sometimes I feel utterly empty and like I am as useless as they come.
On the bright-ish side, I have about a hundred people who will tell me that is not true.
There are times I am scared that nothing will make sense ever again.
On the bright-ish side, does anything ever really make sense? 😉
On the absolute bright side, I have amazing supports in all of you. I am more grateful to you than I can express. You are the bright side.
And if you ever need help finding the bright-ish side, I’m your girl. Practice makes perfect.
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!