I could spend this whole blog post apologizing for the fact that I haven’t posted anything in almost a year. I could fixate on the fact that my last two posts were basically me apologizing for my absence as my posting was pretty staggered to begin with. I could apologize, and I will, because I am sorry. But I also want to touch on a huge part of being chronically ill; the fact that we can rarely, if ever, make promises.
This is a question I have been asked so many times I have lost count.
Usually it is by able bodied, well meaning, friends and family members who live their typical lives full of work, chores, house buying, child bearing, and other excitement inducing activities. They don’t have a chance to be bored and can never truly understand what it is like to be stuck in bed day after day, week after week, month after month.
This question stabs me like a knife every time I hear it and awkwardly try to answer it. From the outside looking in I can understand why they would ask. They can’t really imagine what it is like to spend life childless, in bed with, in their minds, nothing to do.
I’ve spent a lot of time thinking about how I should answer this particular question and I think I am ready to share it, in case you’re ever asked this or have asked it yourself.
No, I’m not bored. I don’t have a chance to be bored. I spend my days trying to survive. I have The Hunger Games going on inside my body 24/7, and it’s a close game.
What may seem lazy to you is a marathon for me. I’m not laying around in this bed for fun. Trust me, it’s not. And my bed isn’t even really comfortable anymore because my side is all sunk in because this is where I live.
I can’t focus enough to even watch a new TV show on Netflix. I am watching the same 4 shows over and over again. I can recite full episodes of Grey’s Anatomy. I am pretty sure I’m a resident surgeon by now.
No, I’m not bored. I use all of my energy phoning doctors throughout the week. I get exhausted from playing Tetris on my phone or petting my cat too much.
No, I’m not bored. If I was I would get out of bed and do something. Boredom subsides when you’re physically unable to do anything.
Or maybe I was bored for the first while and it’s just part of who I am now? Either way, my day is pretty much mapped out by TV shows, medicine taking, and bathroom breaks.
I know it sounds like hell for you. Guess what? It is for me, too.
No, I’m not bored. Being sick is a full time job.
If you want to come over and take a look at my fun filled days you’re more than welcome to. When you get the chance to watch me curled up in pain you might be able to answer your own question, then.
No, I’m not bored. I don’t know the alternative anymore.
I know I’m in pain, but you might have it worse.
I can writhe and close my eyes, but you have to watch it.
You glance over helpless or turn your head away, because this is something you can’t fix.
I’m not the girl you fell in love with, I may be a wreck now but you married me healthy.
If you want to leave, you’re not letting it show.
Instead you gather my meds and bring me to the doctors.
Trying to help the only ways you know how, and it’s everything to me.
I toss and turn all night, thrashing around in pain.
I may be keeping you awake as pain steals sleep from us both.
You may have it worse. Helpless, hopeless.
Pain demeans us both, in different ways.
I don’t know how you deal with this.
Watching your loved one suffer and fade away.
I’m half the girl I used to be, and you’re twice the man I could have ever hoped for.
We all have them. It’s okay to admit that.
For me it feels like every other week is a flare. I’m not even sure how that is possible, but it is and it’s not fun.
I’ve begun jotting down some of the thoughts that go through my head when I am stuck in bed riddled with pain. Maybe you can relate?
This is it. I’m going to die. This pain has to mean I’m dying.
How is this amount of pain even possible?
This is it. This is my life now.
How many heating pads can I have on how many body parts at once?
Am I maxed out of meds now? Or can I take more?
My bed and my body pillow have taken me as their own. We are now in a polygamous relationship and I’m okay with it.
I feel like my teddy bear is the only one who gets me.
I can no longer cry. My eyes are swollen and I have no more tears left.
When was the last time I showered?
I’m not going to shower today.
I don’t remember what outside looks like.
There is an outside, right?
Life is pain.
Either I sleep all day or can’t sleep at all. There is no middle.
There is no comfortable position. There is only toss and turn and thrash and cry until you eventually pass out.
Why is my skin so uncomfortable?
When was my last good day? I had one at some point, right?
How long have I been in bed? 10 minutes or 10 days?
Come on, Netflix, I’m f***ing here! I don’t need this shit right now!
There will be another good day. There will.
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
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”
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.
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,
Good Morning Everyone!
I am back in blogging action!
Before we get started, check out today’s Song of the Week for an awesome Bon Jovi tune!
Now, where was I?
I have been having a hard time deciding what to write about. Do people really want to listen to my inner ramblings? Is my writing any good, really? Am I helping anyone at all?
Even if the answer to all of those questions is a resounding no, should I stop writing? Another giant NO!
Writing is so therapeutic, whether anybody reads it, understands it, likes it, or not.
I am not an expert at anything other than being myself, but I have stuff to stay, I have a voice to be heard, and I write words to be read. Even if I’m the only one reading them.
When I was younger I wrote poetry about loves I never experienced, heart break I never knew, and poured out feelings I could only imagine. As I grew I matured in my prose, spilling out angsty tales of my parent’s divorce and my overcoming cancer. It was real, raw, and maybe a touch pretentious. I put away my pen and paper for a decade when I became preoccupied with real romance, education, working three minimum wage jobs, and living my life slightly recklessly.
In the last couple of years, as my body has failed me yet again, I traded in my pen and doodle covered notebook for the ease of a laptop and click-clacked my feelings for hours. That is how my journey into blogging began.
I realized quickly that there was a place for me in the sea of chronically ill folk. My folk. Folks who get me.
Folk is an underrated word.
Every time I experienced a symptom or encountered an awkward situation, or felt the weight of my illnesses about to crash down on my fragile body, I just typed the letters until they became meaningful words that only my people would understand. And they did. They responded so strongly I felt, even if only for that minute, like I was less alone. And isn’t that the point of this anyway?
Isn’t the point of writing, reading, listening, being alive, to connect? To realize we’re not all walking this earth alone?
It would be a huge disservice to ourselves and each other if we seclude ourselves and muffle our voices. Because you might have a story somebody needs to hear.
You might be the answer to someone’s prayers. You might be the one who can write the words to someone else’s story. You might paint the canvas of someone else’s life. You might lend a listening ear to someone who needs to share their soul. You might be the hope for the hopeless. You might be the one to inspire the world.
And even if you’re not, isn’t it worth a try?
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!
I’m sorry I’m over a week late for this, but I have updated the Song of the Week page (finally!) and it’s a pretty good one, if I do say so myself!
These illnesses have taken so much from me, limiting me to the point where I feel like a prisoner in my apartment, bedroom, and body.
I have lost track of the things these illnesses have taken from me.
I’ve lost track of the number of times I’ve cursed these conditions, this body, and God.
I’ve lost track of the number of times I’ve said “I can’t do this anymore” and thought that I meant it.
I’ve lost track of the number of times I’ve wanted to quit my life, and thought I would.
I’ve lost track of the number of times I’ve prayed for the pain to end.
I’ve lost track of the number of times I’ve prayed for my life to end.
I’ve lost track of the number of days I’ve been unable to work a job I loved.
I’ve lost track of the number of friends I’ve lost because nobody wants to deal with this.
I’ve lost track of the number of tears I’ve cried and profanities I’ve spewed.
I’ve lost track of medications I’ve taken and the side effects I’ve endured.
I’ve lost track of the plan for the life I thought I would have.
I’ve gained an appreciation for the life I have now.
I’ve lost the need to plan, because I lost the life that could be planned.
I’ve gained friends along the way who have opened my eyes.
And I’m thankful for the journey.
Oh hello there, friends!
I know it has been a while and I appreciate your patience!
As you know, the life of a chronically ill person is unpredictable and often inconvenient. Plans made around us are in faint pencil and subject to change at any second.
In exciting news, however, I have begun my journey into vlogging!
It has been a terrifying ordeal but the support I have received has been amazing and overwhelming, so thank those of you who have checked them out.
For those of you who have not and this is brand new information, here are my videos!
Please feel free to comment, like, subscribe, and/or share!
I will be adding a brand new video to this lineup today (hopefully, if the stars align! haha) so stay tuned for that!
Thank you again for your ongoing support!