When I was a teenager I wanted nothing more than to be normal; with my super short, curly, mousy coloured chemo hair I stuck out like a sore thumb. Luckily in high school everyone was so wrapped up in their own lives and drama that people barely gave me so much as a passing glance on their way to English class. And I grew comfortable in my invisibility.
I was never the best at anything. I barely scratched the surface of good most of the time. But I was good enough at a lot of things and that has served me well for most of my life.
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.
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”
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.
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.
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.
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.
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.
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.