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.
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.
As usual with a new post, here is the new Song of the Week to empower you and give you strength!
I have to be honest here, when writing these “how to’s” I feel a bit like a fraud! Who am I to tell other people how to do anything? I am no expert in any sense of the word. I am just a girl living with these illnesses, trying to help people whenever and wherever I can. I do have a pretty successful marriage that I believe is in large part due to my amazing husband. That being said, here is how we make it work!
Honesty is key. Both partners need to be straight up with one another at all times. If you’re having a bad (or good) day, they need to know what to expect. If you aren’t up to outings, let them know! Pushing yourself will only hurt you both. Keep it honest about the realities of your conditions. And try to always let each other know what you need. Don’t hold things in until you burst.
Education is Important for Support and Understanding. Chronic pain workshop and education classes can be outstandingly helpful for both parties. Workshops together and separately are vital for understanding. When both of you understand the illnesses and treatment plans you can better work towards a sustainable and healthy future.
Support Groups are Supportive. Not just for the chronic pain warrior, but for the caregivers as well. Caregivers hold a lot on their plate. They feel like they always need to be strong and able to help, but they need help too! It is not easy for them to watch their loved one in so much pain and feel utterly helpless about it. It is important for them to attend Caregiver Groups so they feel supported as well.
Keep the Intimacy Alive! Spouses can feel like nurses if their time is spent arranging pillows, giving medications, and turning on heating pads. It is important to still do “couple things” when you’re up for it! Dress up and go on a date, have a picnic outside, have sexy time! These things are absolutely vital. Orgasms are good for pain relief! That’s an actual fact! Sex and ArthritisSex and Chronic Pain give some helpful hints when discussing sex in the realm of chronic pain. I know it’s a personal topic and varies from situation to situation.
Keep up with the Inside Jokes and Netflix Binges! My husband and I have really gotten closer throughout these illnesses. I think it’s hard not to, when it’s usually just us here dealing with the day-to-day of the symptoms and realities. Because of this, we have many inside jokes and our own little language basically. It brings us closer as a couple and strengthens our bond. We have a couple things on Netflix we’ve rewatched about a million times (Bo Burnham- What) and enjoy finding new shows to binge on!
Remember to Appreciate One Another. This is probably the most important. Just be appreciative of what each of you brings to the table. If your spouse takes great care of you, thank him/her. If you book the appointments and are there for morale boost, that’s an important job too! You’re a team. A damn good one, too. Please and Thank You’s are still the magic words.
Find things to do That Aren’t Illness Related. You can never really take a break from these illnesses. They’re chronic. And we all know what chronic means (thumbs down). But if you like to play computer or video games to take your mind off of the pain, or can beat each other at Words With Friends, those are cute options that keep you connected in a non-illness way!
I hope this was even a little bit helpful! If you have any questions please email me at firstname.lastname@example.org.
*Disclaimer- Bo might not be for everyone. He is a comedian and can be offensive depending on your preferences and tastes*
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.
Branching out from my regular style of upbeat musings on my life, I would like to take this time to provide some helpful hints to readers who are unsure how to be a friend to someone who lives with chronic pain.
I’d like to start by saying that my friends are amazing, and while the majority of them do not have chronic pain themselves they are all wonderfully supportive of my needs.
That being said, I know many people who struggle with making friends who fully grasp the gravity of their illnesses so I am hoping this can be a guide to promote understanding and happiness.
How to be a Friend to Someone in Chronic Pain
We want understanding, not pity. When we complain about our illnesses or pain we are not looking for pity. The truth is, we are in pain all the time and the fact that we are not mentioning it all day, every day, means that when we do bring it up it’s worse than normal. We may be bringing it to your attention because we feel bad that we are not able to follow through on plans or so you are aware in case we are out of touch for a little while. We are looking for your understanding and support, not pity.
We may not be able to make plans in advance and that has to be okay. Our health is so unpredictable. We never know how we are going to feel from day to day, let alone week to week. We can, quite literally, “pencil you in” for dinner sometime next week with the understanding that if our health is not cooperating we may have to reschedule. We call this a “pain check” instead of a “rain check”. We understand how terribly inconvenient this is and appreciate your understanding more than we could say.
We may not be as available as we would like to be. Sometimes we are unable to talk on the phone or text as much as we would love to for a number of reasons. One reason is that talking on the phone can be overwhelming or even painful for some chronic pain fighters. Texting non stop can cause our chronic fatigue to flare and hurt our hands and joints. We would love to chat, however short the conversation may be! We appreciate you checking in on us!
We’re the same people we always have been, but we’re different, too. This may sound contradictory and confusing, and it is for us also. Pain changes people. We’re not the same people we were when we started this journey and our priorities may have shifted a bit, but we’re still the friends you fell in love with. We can rock a Netflix marathon or gossiping session like nobody’s business and chronic pain warriors have the best blankets, pillows, and snacks you’ve ever seen.
Our bodies may not let us do some of the activities you’re interested in. We don’t want to be left out, but we can’t partake in extreme activities anymore. These activities may include concerts, sky diving, marathon running, or day trips to Cedar Point. This breaks our hearts. It kills us to say no, but we’re not being a “downer” or a “kill joy,” we’re just not healthy anymore. Please have fun and we will live vicariously through you! Let us know when you want to chill and colour. We’re down for that.
If you have any questions about our illnesses, ask us! It’s not a secret you need to tiptoe around. We’d love for you to ask questions! The more questions you ask, the more we explain, the more you understand and the happier we will all be! We know you may feel awkward asking about the ins and outs of our illnesses, but we are totally ready and willing to answer whatever you want to know.
You may see us arrange pillows and pop medications like it’s our day job. It is. Taking care of ourselves is our job. We definitely have a method to our madness, and trust us, all of these things keep us alive and functioning. Yes, we may have more medications than a pharmacy and more pillows than Bed, Bath & Beyond, but each medication and pillow serves a purpose. Bonus points are awarded to friends and family who give us pillows or help us arrange them. It can be exhausting work!
Any offer of help is appreciated. We adore helpful friends! Even if it is something small like hanging out with us for an hour, bringing us coffee, or grabbing something on a low shelf, we appreciate it! Larger offers like helping with dinner, helping with household tasks, or errand running is above and beyond! We are so thankful for your support and can’t imagine life without you!
You are the best friends in the world. And we love you!
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!
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.