Category: self-care

Master Kirsten Has to Rest Sometimes

Posted on by Grayson
I was hoping to report more from the ACR.

 

Unfortunately, after being so excited to attend, I just didn’t think about how my body would cope with things. I was unable to attend the last day I was there (Tuesday) and had to go home earlier most other days as well.

 

I spent a lot more time in bed watching Netflix than I had anticipated.

 

I was originally really upset with this when I had to head home early on Sunday. However, after getting back to my Airbnb, I realized part of why I was feeling so crummy was that my mystery WTF was hitting. There wasn’t really a choice for me – I had to be in a space where I could have a lie-down and, honestly, a convention center really isn’t that.

 

After a few hours of resting on Sunday – and a phone call from T (and the piggies!) – I wound up having the energy to go to the beach and get some food. After all, I needed to eat dinner and it was 30 degrees at home. Laying down outside would still be laying down.

 

glossy photo of Ocean Beach with the water reflecting the partly cloudy and sunny sky

 

While I stayed all day Monday, I wound up having to sit out the afternoon sessions because I was just not feeling well at all. After a quick meetup with some friends at the conference, I headed out to have dinner with a few disability justice friends.

 

I felt like it was the push I needed to get through the next day. However that helped emotionally, my physical body just screamed hell no Tuesday morning. It was a Netflix and rest day, rounded out well by visiting the windy and cold beach before snagging dinner with a dear friend in the area.

 

As much as I wished I could’ve attended some of the intense sessions on Tuesday – especially the one on Still’s and other autoinflammatory diseases – I know that I needed to rest. It’s incredibly hard to let myself do that, but it’s getting more commonplace.

 

It also occurred to me while writing this that I never shared – I got my degree! My Masters is now hanging proudly on the wall in our short hallway. Things feel a lot lighter with that finished. I’m also grateful to have snagged two part-time jobs that will let me still work at home and around my schedule.

 

So, if you’re looking for more updates about sessions from the ACR, I, unfortunately, don’t have them. I hope to write stuff up about some of the posters and research I saw, though! It just might take a bit before those make their way up here.

 

I hope that you’re resting as much as your mind and body need.

 

 

Sometimes you just need a reset

Posted on by Grayson
The last few weeks have seen me having a lot of good days which I desperately needed.
It all started with a trip to Cancun, Mexico with my college roommate. It was a great way to take a break from social media and work. I mean, I did manage to get a horrible sunburn because we were drinking margaritas in the ocean, but that’s beside the point.
It’s hard to not rest and want to soak up as much sun as possible when you’re around this instead of frozen tundra Wisconsin life.
It was nice to get a sunburn honestly. It was a good reminder that pain usually comes to people after they do something.
Katy and I also just really needed to spend time together in the wake of all the political ick going on.
Despite having a sunburn when I got back, I really felt like I had a fire lit under my ass. For the first time in a while, I had really just taken a legit break and felt ready to attack things.
A week later, T and I got to go see one of my favorite bands – Boyz II Men!
I’ve been listening to them ever since I was little and I have always enjoyed their music. Seeing them in person was amazing.
It also got me thinking about other things from my youth that I really enjoyed… like albondigas soup… which all connects back to Mexico, funny enough. I talk about it in my latest piece over on Medium.
Hey, and I lost like five pounds within a month!
It’s not that things are all going right. My inflammation levels are high. My fatigue is being a butt. I have a million things I want to do and not always enough energy to do them.
Still, things feel better. Rest is incredibly important, especially in times of resistance. Make sure you’re taking care of you.

 

September #SelfCareChallenge

Posted on by Grayson
It’s no secret that I have a love of self-care talk. It’s been a while since I talked a lot about it here just because I’ve been busy, haha.
And trying to get better at self-care while busy.
One of my favorite things to do is to be incredibly nerdy and adorable, as illustrated by this picture of me hanging out with Alex Kingston and David Tennant. Obviously, um, I don’t do this often, but it was a big self-care thing meeting them and speaking with them.
David said my name later in the day when I snagged his autograph – and said it correctly in his beautiful Scottish accent. I told him how the version of Hamlet starring him and Patrick Stewart is my favorite.
Sigh.
It was a great day.
When I feel crummy or like I haven’t accomplished much in my life, I remind myself of conversations and cool things like that. It reminds me that I’m cooler than I think.
Why do I bring all this up? Because my pals over at Self Care Movement are having a September #SelfCareChallenge! If you’d like to participate:
 
Post a photo of yourself doing something that boosts self-care (eating clean, exercising, spending time with family, whatever makes you feel good), tag #selfcaremvmt and nominate a friend to help us build a strong self-care movement!
You can follow the Self Care Movement on Facebook, Twitter, and Instagram.

 

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.

 

Workplace or Professional Self-Care

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 and am extremely happy to say that I will be participating in their Self Care Mvmt at the end of June in Toronto! 
 
O, Canada!
 
There is some great buzz out there already on Twitter using the tag #selfcaremvmt. The 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.
 
For the next few weeks, I’ll be posting on some self-care topics as a part of the lead up to this awesome event – and my foray into world travel. 
 
It is important to mention that I am being compensated for these blog posts and my involvement in the Self Care Mvmt. However, all thoughts below are my own and have not been influenced by said compensation.
 
Today’s topic is Workplace or Professional Self-Care.
You might be thinking: “What does this person who just left her job know about self-care at work?”
 
I know enough to know that I had to quit my job, y’all.
When I was working my previous job, I would spend around eight hours sitting in an office or in my car traveling to various sites for meetings. I spent all day at work, stuck writhing in pain because I was trying to save sick time for when I was worse off than that. When I was ‘worse off,’ I wound up needing multiple days off of work because I had pushed myself too hard.
It didn’t work well because I wasn’t practicing self-care and self-love the right way.
Earlier this year, I began dealing with a flare-up of my fibromyalgia that I frankly still am in. It has been four months. I was missing up to two days per bi-weekly pay period of work while trying to deal with this. I began to feel bad for being gone.
I was assured that it was okay since I had a Family and Medical Leave Act (FMLA) plan in place.
Once this had gone on for a certain time period, though, I began to get passive aggressive comments from physicians and other staff members about my absences.
It wasn’t enough that I was beating myself up about missing work and that I had an office mate who wanted me to fail all the time – now I was getting comments from people engaged in the care of people like myself!
It was scary!
In retrospect, a long time ago I should have sat down with my supervisor and the physician I worked most closely with and outline just how negative and harmful my office mate was. I should have complained about physician and other HCP behavior when it was negative and harmful, not just to me but to others.
Setting boundaries, though, was never something I was good at.
Now that I work for myself, though, this is changing.
I handle my breaks as I need them – emotional, mental, and physical. There is a reason why Netflix is on while I work!
I am engaging with others but setting limitations on what I can and cannot do.
I am working towards balancing my workload, though I’m still working on figuring out what that is for me right now.
The one thing I know for sure is that I have a boss that understands my illness better than anyone else in the universe. She’s always up for coffee, a quick run-around with the guinea pigs, or a nap. And I’m pretty excited to work for her – not just because she’s pretty okay, but also because she’s good at self-care when she’s allowed to be.

 

Psychological and Emotional Self-Care

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 and am extremely happy to say that I will be participating in their Self Care Mvmt at the end of June in Toronto! 
 
O, Canada!
 
There is some great buzz out there already on Twitter using the tag #selfcaremvmt. The 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.
 
For the next few weeks, I’ll be posting on some self-care topics as a part of the lead up to this awesome event – and my foray into world travel. 
 
It is important to mention that I am being compensated for these blog posts and my involvement in the Self Care Mvmt. However, all thoughts below are my own and have not been influenced by said compensation.
 
Today’s topic is Psychological and Emotional Self-Care.
Self-care is hard. When it comes to physical self-care, we can write it off as needing to do maintenance like oil changes so our bodies don’t fall apart.
Mental, psychological, and emotional self-care, however, cannot be handled so easily.
In order to take care of our minds and souls, we have to discover what helps us individually to a further extent than physical self-care. Fulfillment and enjoyment are at the root of this type of self-care.
Personally, there are many things that I find help with this type of self-care. Meditation and mindfulness help me immensely as I discussed with Rohan Gunatillake for his book This is Happening:
The app Rohan created, Buddhify, helps so much.
Therapy helps me as well. My therapist is AMAZING and she does such a great job of helping me to think through things, even if I don’t see her as often as I could.
As I touched on in my last post on spiritual self-care, being in nature and/or with loved ones truly helps me to re-energize.
Laughter is key as well. Without laughing at my hands when they don’t work or at myself when I slip and harm myself due to the lack of strength I once possessed… I would cry. I have learned that crying isn’t bad but merely a release of emotions. Still, I don’t enjoy it. It feels more harmful than helpful and isn’t conducive to my overall health.
I can track my moods through the Health Storylines app which helps me to practice self-care more earnestly.
One of the things that I enjoy from the Health Storylines app from Self Care Catalysts is how easy it can be to gather wisdom and thoughts for the day:
There are also portions of journaling (which I don’t necessarily utilize because I write here!) but is a great set-up:
It isn’t always easy to figure out what things to write, so these are great prompts for those new to journaling.
What are some ways that you practice self-care for the emotional and psychological parts of you?

 

Spiritual Self-Care

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 and am extremely happy to say that I will be participating in their Self Care Mvmt at the end of June in Toronto! 
 
O, Canada!
 
There is some great buzz out there already on Twitter using the tag #selfcaremvmt. The 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.
 
For the next few weeks, I’ll be posting on some self-care topics as a part of the lead up to this awesome event – and my foray into world travel. 
 
It is important to mention that I am being compensated for these blog posts and my involvement in the Self Care Mvmt. However, all thoughts below are my own and have not been influenced by said compensation.
Today’s topic is spiritual self-care.
The word ‘spiritual’ often leads us to conjure up ideas of someone interested in religion, but it means so much more. I personally am not a religious person.
To me, spiritual self-care is something that allows me to recharge my batteries, help me unwind, and where I can simply exist. There are a few things that bring me to that place – most notably, exploring and spending time with loved ones.
Many of my loved ones aren’t physically close and, to be honest, being in nature in Wisconsin is really hit or miss.
I am leaving my job at the end of this week because it will allow me the ability to take better care of myself. This is something I will touch on in the next few weeks in more detail, but it plays a role in my spiritual self-care as well. Without being tied down to my current job, I will have more opportunity to be in the community and outside on the few good days we get here.
It also allows me the ability to travel much more, something I find my heart glows from.
It’s the thing I love most of all.
Traveling and exploring can take a physical toll if I am not careful. My multiple chronic illnesses, especially my systemic juvenile idiopathic arthritis and fibromyalgia, don’t do as well with certain types of travel. I really need a lot of time when flying somewhere to unwind after the trip or, sometimes, after a flight.
Traveling, for me, helps me to work more on staying in the moment, being present. I am no longer thinking about my history of abuse or the toll my illnesses may take. The only worries and anxieties I encounter are related to engaging in something fun.
I meditate, though not enough lately. I use an app called Buddhify, which I know I’ve discussed so much before, but always deserves mentioning. The Health Storylines app, from Self Care Catalysts, has great guided meditation as well as an area for social support.
Part of my goal with the time I am taking off of work will be to set a schedule for myself that includes physical and spiritual self-care methods so you’ll have to stay tuned to see how that goes!
I anticipate that this move will increase my quality of life, though.
What are some things that you do that could be considered spiritual self-care? Are there any apps that you utilize to help you do so?

 

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?