Category: self-love

A Recap of the #SelfCareMvmt Summit

Posted on by Grayson
I was introduced to Self Care Catalysts when I attended ePharma back in March. I really had a great time speaking with the SCC team. SCC paid for my travel to Toronto for the #SelfCareMvmt Summit. However, all thoughts below are my own and have not been influenced by said compensation.
 
I just really, really love this team, who put this together in three months.
 
Courtesy of Health Storylines
Make sure to check out #selfcaremvmt on Twitter for some fun convos around this summit. 
Dude, Canada was awesome.
My trip was fun… though my flight was delayed four hours. I was okay with that, though, since there was a mechanical issue with the door on the previous plane!
Plus, I got wine and some free food.
I rested most of the day of the #selfcaremvmt summit, since it felt like I needed to practice what I preach with regards to self-care. I spent time with my pal Kristin, just hanging out and enjoying each other’s company.
The shirt was from Wear Your Label, obviously
When we arrived to the MaRS building, it was time to enjoy some delicious food and get mic’d up…
Kristin Coppens, Lene Anderson, and me with my blonde hair
But not before spending time with Lene Anderson! I also got to meet friends like Annette McKinnon, though we neglected to commemorate that with a photo – d’oh!
Courtesy of Kristin
The keynote speaker of the evening was Margaret Trudeau, the former first lady of Canada and, yes, Justin Trudeau‘s mom. She was hands down one of the most amazing people to see speak. I have had the honor of seeing many people in various venues, but this was something.
As someone living with PTSD, I find it hard to discuss that in public due to stigma. That night, I watched Margaret Trudeau openly discuss her Bipolar Disorder in the most endearing, hilarious, and frank way.
I had goosebumps for the bulk of her talk.
I just really wanna be her best friend.
We heard from other amazing people such as Filomena Servidio-Italiano from the Colorectal Cancer Association of Canada, psycho-sexual therapist Sandra Rotholc, psychotherapist and physician Lucinda Sykes, writer and Crohn’s disease patient John Bradley, comedian Robert Hawke, and then us cool ladies on the patient panel!
This has been one of the biggest things I’ve participated in. I was nervous at the beginning, but not by the time I got on stage… which is weird for me. I’m used to always fearing speaking in front of others.
Not anymore.
Courtesy of Health Storylines
I did not mean to match Rob, but hey it worked out pretty well!
During the summit, I learned so much about grace, love, and support. It reaffirmed so much of what I already knew – the universality of how illness makes us feel alone, in denial, and struggle with day-to-day life.
It helped to make it more obvious that the work we do as patient advocates and activists is so needed.
The most important thing for us all to remember is that age-old illustration of oxygen masks on an airplane. So many of us push ourselves out of self-care under the guise of helping others – sometimes that’s the real reason and other times we’re in denial.
Courtesy of Fresh Stitches
And that’s okay.
But we can’t help others without taking care of ourselves. It’s impossible to help people if you’re dead or if you don’t have the energy to do so.
We just have to remember that.
At the end of it all, CEO Grace Soyao announced a self care design challenge. We are charged with answering the question:
 
How might we support and enable self-care as part of the management of long-term chronic conditions?
 
Think you have a way to answer that question? Enter your submission here and you could get the chance to go hang out with SCC in Toronto for two weeks as well as snagging a $1,000 stipend while you work to incorporate your idea into SCC’s Health Storylines app.
 

 

Are you ready for the #selfcaremvmt???

Posted on by Grayson
A while back, I wrote a few blog posts about self-care:

 

In each, I discussed how I was introduced to Self Care Catalysts through ePharma. Their upcoming movement centers around how important it is to care for ourselves as patients with chronic illnesses and to celebrate the moments where we have been able to care for ourselves.
Now it’s time for the Self Care Mvmt event in Toronto!
Thanks Wikipedia!
You best believe this Wisconsin girl is going to have a heck of a time near the Hockey Hall of Fame even if the Blue Jays aren’t at home. I will also bring back as much maple syrup as they allow me to because I need the good stuff to make some maple donuts. For not having grown up in Wisconsin, I really fit in here. WOW.
Mostly, I am just so stoked to be spending time with my pals Lene and Kristin.
Please check out the tag #selfcaremvmt on Twitter for more fun stuff, especially Monday night. You can also catch up on stories that many chronic illness peeps have shared here.

 

Can you be depressed and function at the same time?

Posted on by Grayson
In the past, some have questioned if I can be depressed, have anxiety, or deal with Post Traumatic Stress while I still accomplish so many things.
Via Tumblr
Depression, Anxiety, and PTSD have been, historically, some of the fuelers of the greatest things we’ve known – paintings, music, plays, books, etc.
Van Gogh was super depressed. The dude cut off his own ear.
Self-Portrait with Bandaged Ear
Come on.
Yet, he created some of the most beautiful art ever known.
Other notable awesome people with mental health issues include:
  • Michelangelo: OCD.
  • Tchaikovsky: Depression.
  • Beethoven: Bipolar Disorder & Depression.
  • Edgar Allan Poe: Depression.
  • Johnny Depp: Panic Attacks.
  • Isaac Newton: Bipolar Disorder.
  • Howie Mandel: OCD.
  • Demi Lovato: Bipolar Disorder.
  • Abraham Lincoln: Depression, Anxiety, and PTSD.
  • Buzz Aldrin: Depression.
  • Ernest Hemingway: Bipolar Disorder.
  • Marlon Brando: Depression.
  • Darrell Hammond: PTSD.
  • Carrie Fisher: Bipolar Disorder.
  • Calvin Coolidge: Depression.
  • Stephen Fry: Bipolar Disorder.
  • Kurt Cobain: ADD & Bipolar Disorder.
  • Agatha Christie: Depression.
  • Teri Hatcher: PTSD.
  • Jacqueline Kennedy Onassis: PTSD.
  • Whoopi Goldberg: PTSD.
  • Beyoncé: Depression.
Here we have world leaders, scientists, and entertainers. These people have changed the world despite their mental health issues.
Many of the people on this list are or were very open about their struggles with mental health as well. We discuss our mental health issues because we want others to stop feeling alone or like they have no one to turn to. When mental health issues are so prominent in the chronic illness community, why wouldn’t we discuss these as being just as valid and debilitating as other chronic illnesses?
Isn’t that the point of being a patient activist and blogger anyway?
Via Wisdom to Inspire
If Abe Lincoln can run the world, help fight a war, care for his wife’s mental health issues, and raise his kids while living with the very same three conditions I endure daily? I think I can conquer whatever lies ahead of me.

 

Am I a Hypocrite?

Posted on by Grayson

I feel like a hypocrite…

Lately, I’ve been sleeping on the couch instead of in my bed next to my husband.

There was no torrid affair with a movie star or falling out. Instead, this is all thanks to the plethora of illnesses that I’ve collected over the years. The biggest culprit as of late has changed from my mostly-controlled Systemic Juvenile Idiopathic Arthritis (SJIA) to my Fibromyalgia. With that comes allodynia, or that thing of when sensations that shouldn’t hurt you do hurt – like clothing touching your skin. Our couch is super soft and feels like a fleece blanket so, when my Fibro flares up, that’s where I live.

That doesn’t mean I slow down by any means. I do a million things from that couch: work on my masters, plan advocacy events, raise awareness of illnesses or money for new treatments, mentor others, write, run two websites, host a weekly chat, Skype or game with my sister, be a badass friend, play with my guinea pigs, pass out and snore, and more! I do sleep – promise.

I’m not superwoman. I know this. I have dealt with such bad fatigue that, when I have the energy to accomplish these things, I have to act. Call it making up for lost time, being stubborn, hogging opportunities – I call it helping others. That’s what I love to do.

Participating in such a wide variety of things contributes to stress and, in turn, pain at times. It takes away from things I might be able to do with family or for self-care. The topics I write about – relationships, self-love, sexuality, dealing with comorbid conditions, managing healthcare, recovering from childhood abuse, and more – resonate with others. They are topics that aren’t covered well by other patients, physicians, healthcare professionals, organizations, and more.

I do all of this because I know that I could have used someone like me as I grew up, as I learned more about my illnesses, to show that you can still be sassy, realistic, have a crummy backstory, and STILL live an awesome life despite rocking a replica House, MD cane sometimes.

 

I’m that person who annoyingly nags you about taking care of yourself. I do it because I love you and because taking care of ourselves is integral to living well with chronic illnesses.
Hilariously enough, I am really bad at self-care. As the idiom goes, “Those that can, do. Those that understand, teach.”
I get why it’s important to take care of myself, and I try. Living with multiple chronic illnesses and working full-time can be very tiring, especially when you’re trying to change the world too.
You know, no biggie.
What are some ways you could be taking better care of yourself?

 

Self-Love 101!

Posted on by Grayson

What’s Self-Love 101? A week-long email course specifically for us chronically ill and awesome peeps!

The aim of this course can be summed up by my friend Jaq here:

Jaq would like you to know glasses are not delicious

I want to help you challenge yourself – to challenge the notions that we have to be productive 110% of the time and that it’s not okay to take breaks.

Gus suggests resting with a Tardis blanket

I want to help you examine the relationships you have, both with others and yourself, to help you be the best – and healthiest – you.

Jaq and Oreo have the best friendship EVER

I want to help you feel happier about yourself and to stop that negative talk that’s so common, whether you’re ill or healthy. I find that my own negative self-talk gets much worse the sicker I am, though, because I start feeling like a bad friend for canceling plans and the like.

UPDATE: The e-book is ready and waiting for the course to begin. If you sign up by 2/27, I’ll send you an extra something something!

I hope that you will join me on this journey! Sign up here!

 

Book Review: How to Live Well with Chronic Pain & Illness by Toni Bernhard

Posted on by Grayson
For Christmas, my husband’s amazing aunt got me Toni Bernhard‘s latest book How to Live Well With Chronic Pain and Illness: A Mindful Guide. I’ve enjoyed Toni’s previous books as well as her pieces on various websites like Psychology Today.

 

She has been a huge inspiration for me living with chronic illness. This book just takes the admiration I have for her further.
Courtesy of ToniBernhard.com
This book interestingly balances information for those of us who are already practicing mindfulness and those who are new to the subject, just as it balances information for those of us who have been ill a long time versus those new to the chronic life.

 

Toni has done an amazing job of capturing so many of the difficulties we face with a chronic illness, from being ill at a young age to self-loathing and self-blaming to how that affects our relationships with others and our caregivers.
It’s truly a must-read for anyone with a chronic illness – or for our loved ones. I’ll probably be bugging T to read this to get his thoughts as well as to see how it helps him to understand both his own and my illnesses.

 

There is so much that I can say and yet the words escape me so, like I usually do at the end of my reviews, I’d like to share some quotes from Toni that really stuck out for me.
When we become aware of the mental and emotional challenges that accompany chronic illness, not only is it easier to adjust to and accept our news lives, but we’re much more likely to make skillful decisions and wise choices along the way. (3)

 

I’ve learned that the burden is on me to make my medical condition visible to family and friends, especially because my chronic illness, as is often the case, is invisible. If I don’t make the effort to educate them, their expectations of me may be way out of line with what I can handle. (8)

 

Mindful awareness of your thinking patterns is instructive because, without mindfulness, when you’re caught up in unpleasant thoughts or emotions, you’re likely to feel as if they’ll last forever. (17)

 

It’s easy to go beyond our limits when we’re chronically ill, partly because adrenaline kicks in and convinces us that we’re doing fine. Unfortunately, when that adrenaline wears off, a “crash” is invariably in sight. (18)

 

Allowing them to help when you’re struggling with your health makes them feel less helpless in the face of the new challenges in your life. It can mean a lot to someone to be able to aid a friend or family member who is struggling with his or her health. (25)

 

Sticking with the example of feeling irritated at physical pain, the way to understand and accept what’s going on in your mind is to gently acknowledge that irritation is present, and then incline your mind toward kindness and compassion for yourself. (74)

 

To reiterate a point from the previous chapter, physical discomfort has three components: the unpleasant physical sensation itself, the emotional reaction to it, and the thought patterns that are related to the first two components. (77)

 

Mindfulness meditation is an excellent tool for seeing that you need not believe in or act upon the ever-changing array of thoughts and emotions that arise in the mind. But if these unresolved issues are part of your deeply embedded personal psychological history (as opposed to being the thoughts and emotions that typically come and go for everyone during meditation, such as a wave of sadness or worry), they can stick in your mind and increase in intensity, leading to anxiety, anxiousness, and fearfulness. (92)

 

Several young people have told me that they’ve been openly challenged when they park in a disabled spot, even though they have the required placard or sticker. (By contract, no one has ever challenged me.) If a stranger is rude to you in this fashion, the best response is to acknowledge to yourself that you feel hurt, take a deep breath, and then immediately turn your attention to taking loving care of yourself. (140)

 

In addition to the challenges they share with the person in their care, caregiver face their own set of stressors. They must live with the frustration and helplessness of not being able to make their loved one better. They’ve been thrust into the role of patient advocate in the medical system, a role for which they have neither training nor expertise. They often have to take over the running of the household. Finally, they’re the ones who see their loved one at his or her very worst. (195-196)

 

 

Self-Compassion

Posted on by Grayson

Whenever you get hard on yourself today, comfort yourself with a physical gesture and a few words of compassion, such as, “I’m having a tough time, but I deserve my own love and kindness.” According to self-compassion researcher Kristin Neff, physical touch releases the feel-good hormone oxytocin – even when the touch is your own.

Today’s Tiny Buddha Challenge is an interesting one. I often find myself rubbing parts of my body like my neck/collarbones or hips when I’m not well and am in need of comfort or a pick-me-up. I had not put together, though, how this might relate to oxytocin, the chemical of love.

What do you usually do when you start getting hard on yourself? How does this keep you stuck?

Lately, I have been much better on this as I’ve been working on self-love and self-care as a part of the #ChronicSex movement. However, that doesn’t mean this is perfect or that I talk to myself like a champ all the time.
Over the weekend, I had a hard day at my swimming class. As I was in the bathroom at home after the class, I reflected on how stupid it was for me to try to take a class at the same time one day a week for two and a half months without considering my fatigue and pain levels would get in the way – or how my fibro and other issues would be exacerbated.
It was bad.
I had to take a step back… figuratively, obviously, because the toilet was in the way… and take a breath.
That negative self-talk has been ingrained in all of us for various reasons – family/childhood issues, the media, etc.
Recognizing it when it happens is the first step to stopping it because you know what’s going on.
It happened to be my sister’s birthday so, since I always bring my phone in the bathroom thanks to IBS, I texted her to tell her that I loved her bunches.
Stepping back, I know that I did this as a way of making things up to myself for having been harsh as I often utilize my sister as a way to treat myself better. I’ll think, “Is this something I would say to Kelsey?” If it’s not, then I know the situation has turned too negative.

What, if anything, do you fear might happen if you’re not hard on yourself? Is is possible that’s not true?

This is a really good question for us all to examine.
Sometimes, I know that it may seem like we won’t achieve as much without pushing our own buttons, without being horrible to egg ourselves on.
We can do so much more without that.

What type of physical gesture do you find most soothing?

A rubbing/scratching in the area between my chest and my neck. It can be erotically pleasing or just comforting.
What about you? I’d love to hear your answers for these questions!

 

Self-Care Sunday: Exercises in Self-Care

Posted on by Grayson

Self-care is not easy. We’ve talked about this before. A lot of people aren’t sure where to start or how to go about practicing self-care or self-love.

It’s not easy to figure out what to do if you don’t know where to start!

In light of that, here are some of the things that I enjoy doing for self-care. Hopefully, this list can spark ideas in you, too! I’ve added some suggestions under the general ideas.

More physical:

  • Going for a walk
  • Being out in nature
  • Taking a bath
  • Singing Broadway tunes in the shower
  • Cooking or baking
    • I LOVE decorating food
  • Dancing
  • Yoga/stretching
  • Spending time with friends
  • Help others or volunteer
  • Eat your favorite comfort food
  • Make a date night with yourself and go to dinner and the movies
  • Lotion up!
  • Love on your pets
  • Drink water
  • FOR THE LOVE OF GOD NAP
More mental:
  • Writing
  • Meditating
    • Check out the Buddhify app – it’s my fav
  • Listening to music
    • I have a Spoonie Fighter playlist here
  • Learning something new
  • Watching scary movies
    • Insidious
    • The Conjuring
    • The Exorcism of Emily Rose
    • It Follows
    • Army of Darkness (it’s B-movie scary & hilarious)
    • The Omen (the original)
    • Paranormal Activity
    • The Woman in Black
    • The Faculty
    • Shaun of the Dead (again, funny)
    • Invasion of the Body Snatchers (original)
    • Event Horizon
  • Watching funny shows
    • Bob’s Burgers
    • The Office
    • Ash vs Evil Dead
    • Unbreakable Kimmy Schmidt
    • Archer
  • Read (I lean towards non-fiction, so the fiction ones are marked with F)
    • The Demonologist: The Extraordinary Career of Ed and Lorraine Warren
    • Bossypants
    • Rebel Buddha
    • The Pain Survival Guide
    • When Doctors Don’t Listen
    • Southern Lady, Yankee Spy: the true story of Elizabeth Van Lew, a Union agent in the heart of the Confederacy
    • The Somnambulist (F)
    • The Atlantis code (F)
    • The President is a Sick Man: wherein the supposedly virtuous Grover Cleveland survives a secret surgery at sea and vilifies the courageous newspaperman who dared expose the truth
    • Alif The Unseen (F)
    • The Ultimate Guide to Sex and Disability: for all of us who live with disabilities, chronic pain, and illness
    • The Monster of Florence
  • Playing video games
    • Star Wars Battlefront
    • Among the Sleep
    • LEGO Jurassic World
    • LEGO Batman
    • LEGO Harry Potter
    • LEGO Star Wars
    • The Last of Us
    • Alice: Madness Returns
    • Heavy Rain
  • Puzzles and crosswords
  • Paint or color
  • Clean your to-do list up
  • Unfriend/unfollow people you don’t like or who bring you stress
What are some things you do or some ideas you have about self-care now?

 

Self-Care Sunday: resources

Posted on by Grayson

Whether you’re a caregiver or caregivee – or neither! – self-care is integral to living a quality life. I’d like to give you some very basic resources on self-care here.

 

Next week, we’ll talk a little bit more about exercises and ideas on self-care.