Category: self-care

Stepping back a bit

Posted on by Grayson

A few weeks ago, T blocked my calendar. For a whole weekend, I wasn’t allowed to schedule anything.

It was a much-needed wake-up call, even if he claims he did it as a silly gesture.

I do a lot of things:

It’s been a lot to handle, and all but two of those things are unpaid or worse – I pay! And there also isn’t the whole self-care thing on there… I’ve been slacking, and it definitely shows.

I really enjoy everything that I do. There are times, though, where things get a little too hectic. Coming back from New York, I worsened my fibro flare. I tried to keep the same pace I had earlier in the year, and my body couldn’t do it anymore.

Thanks, Facebook!

 

It’s funny, though. I realize I’m a nerd, but hear me out: Spock’s quote from the Wrath of Kahn echoes in my head as I make these trade-offs: “Logic clearly dictates that the needs of the many outweigh the needs of the few,” and Kirk adds, “Or the one.”
But my body says…
Thanks, Buzzfeed!
So I’m going to slow down a little bit and focus more on the quality of what I do.
Yay?

 

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.

Self-Care Sunday: keeping myself organized

Posted on by Grayson

In the last few weeks, I’ve been working on managing my time better.

One of the great tools that helped me to do so is Tanya’s blog planner at her site, Mom’s Small Victories.

I’ve been able to keep track of the posts I’ve written so far (this is as of 12/30/2015) and what I need to write. It’s easy to look and see what is done, what it’s for, and what I still need to work on.

This is especially helpful as I’m guest blogging in preparation for attending the ePharma Summit the week of February 29th in NYC.

It’s certainly easier than trying to see these things on my already very crowded Google calendar, especially with my hubby’s things on there too!

What are some ways that YOU stay organized with the things that you do?

 

Self-Care Sunday: eating well with illness

Posted on by Grayson

It seems like every few weeks I get this thing where I can’t really eat. I just have no appetite. The first time this happened I was six… and lost a lot of weight in the middle of already being tremendously sick at the time.

You could see my bones. It was bad.

The most recent event happened to coincide with starting kineret and getting back from the JA conference. I’m not sure if it was from starting the drug, the traveling, or just because I hadn’t been on meds for a while. My guess would be the latter because my theory is that I get swelling somewhere in my digestive system because I often feel bloated too.

Next time this happens I’ll definitely pop off to the doctor.

But in the meantime, how was I supposed to eat and get any energy? I stopped by Whole Foods and took a gander, finding Probar Base. I already had peanut butter (and have since switched to a healthier PB – Peanut Butter & Co’s Smooth Operator) so I figured I should try it.

This dairy free meal wound up being over 40 grams of protein which was great!

Living in Wisconsin, being dairy free is a little more than awkward. I’ve decided that I’ll do minor dairy but try to do so at home… mostly because I have a lactose intolerance and it sucks. I’ve found I can tolerate dairy up to a certain point – or more, depending on the brand. There’s a local farm that we get our dairy from and I’ve never had a problem with it.

I wasn’t a huge fan of that shake, so I’ve switched to rice milk with my coffee instead.

When I can’t eat a lot, I try to make sure that I get a good amount of protein so I can fuel my body. I tend to supplement with things that I love to eat but don’t always let myself eat then – potatoes, lots of sweets, etc. Getting enough calories means more energy – and hopefully not falling asleep at work!

What are some things you do to make sure you eat well even when you aren’t feeling the best?

 

Self-care Sunday: struggles with self-compassion and affirmations

Posted on by Grayson
Affirmations can have an amazing impact on our lives.
One of the best things I’ve done for myself is to start reading Blessing Manifesting. I know I’ve talked a bit about the site and Dominee, who runs it, but I just can’t stop.

When I first really started out on the journey to loving myself, I snagged a bunch of her free stuff. I posted a few of the things up on my bathroom mirror, where they still sit.

 

I think a big part of the problem was learning to trust myself. Growing up in my household, I was constantly praised for my smarts and then told that I was an idiot. I became very insecure because I internalized the latter even if the former was true.

In order to truly start knowing myself, I’ve had to treat myself like a best friend. I often think about how I would treat T or Kels if they were going through similar things… or, at least, what I would tell them. Between that and reading these every time I’m in the bathroom, it really started to click.

Instead of pushing myself too far, I am resting when needed and learning to speak up about things. It hasn’t been easy. There are days where I’ve wanted to rip those papers off the wall and feed them to the guinea pigs… because that wouldn’t be as wasteful and they LOVE paper, especially Jaq.

Another thing that seemed to be in my way is patience. I usually am really good at being patient with others but I often feel impatient with myself. I should be able to do what I want, whether it’s cooking or cleaning or building a desk.

It’s been really hard to have to step back and try to be kind and show compassion to myself when my hands don’t work especially. Hands weren’t ever a problem for me until the last few years. As a writer and someone who is on the computer often or doing things that kinda need good motor skills, this is incredibly hard. Give me my limp any day over crip hands!

Anyway, this is where affirmations can really come in handy. They can be really simple or general.

Or very pointed and specific.

Either way, they can really help.

What are some affirmations that you might be able to use?