“Everything Is Awful and I’m Not Okay”

Eponis (eponis.tumblr.com) is a Tumblr site focused on self-care.  I like this list of good things you can do to at least make your life temporarily better.  Maybe some will work for you?  (This post is not dated.  It might be from August 2016.  I read about it on a online support group for caregivers.)

Robin

——————-

eponis.tumblr.com/post/113798088670/everything-is-awful-and-im-not-okay-questions-to

Everything Is Awful and I’m Not Okay: questions to ask before giving up
Eponis
un-dated

Are you hydrated?  If not, have a glass of water.

Have you eaten in the past three hours?  If not, get some food — something with protein, not just simple carbs.  Perhaps some nuts or hummus?

Have you showered in the past day?  If not, take a shower right now.

If daytime: are you dressed?  If not, put on clean clothes that aren’t pajamas.  Give yourself permission to wear something special, whether it’s a funny t-shirt or a pretty dress.

If nighttime: are you sleepy and fatigued but resisting going to sleep?  Put on pajamas, make yourself cozy in bed with a teddy bear and the sound of falling rain, and close your eyes for fifteen minutes — no electronic screens allowed.  If you’re still awake after that, you can get up again; no pressure.

Have you stretched your legs in the past day?  If not, do so right now.  If you don’t have the spoons for a run or trip to the gym, just walk around the block, then keep walking as long as you please.  If the weather’s crap, drive to a big box store (e.g. Target) and go on a brisk walk through the aisles you normally skip.

Have you said something nice to someone in the past day?  Do so, whether online or in person.  Make it genuine; wait until you see something really wonderful about someone, and tell them about it.

Have you moved your body to music in the past day?  If not, do so — jog for the length of an EDM song at your favorite BPM, or just dance around the room for the length of an upbeat song.

Have you cuddled a living being in the past two days?  If not, do so.  Don’t be afraid to ask for hugs from friends or friends’ pets.  Most of them will enjoy the cuddles too; you’re not imposing on them.

Do you feel ineffective?  Pause right now and get something small completed, whether it’s responding to an e-mail, loading up the dishwasher, or packing your gym bag for your next trip.  Good job!

Do you feel unattractive?  Take a goddamn selfie.  Your friends will remind you how great you look, and you’ll fight society’s restrictions on what beauty can look like.

Do you feel paralyzed by indecision?  Give yourself ten minutes to sit back and figure out a game plan for the day.  If a particular decision or problem is still being a roadblock, simply set it aside for now, and pick something else that seems doable.  Right now, the important part is to break through that stasis, even if it means doing something trivial.

Have you seen a therapist in the past few days?  If not, hang on until your next therapy visit and talk through things then.

Have you been over-exerting yourself lately — physically, emotionally, socially, or intellectually?  That can take a toll that lingers for days. Give yourself a break in that area, whether it’s physical rest, taking time alone, or relaxing with some silly entertainment.

Have you changed any of your medications in the past couple of weeks, including skipped doses or a change in generic prescription brand?  That may be screwing with your head.  Give things a few days, then talk to your doctor if it doesn’t settle down.

Have you waited a week?  Sometimes our perception of life is skewed, and we can’t even tell that we’re not thinking clearly, and there’s no obvious external cause.  It happens.  Keep yourself going for a full week, whatever it takes, and see if you still feel the same way then.

You’ve made it this far, and you will make it through.  You are stronger than you think.

 

“Beyond the Bucket List” and The Unprepared Caregiver

Someone in our local support group recently told me about the website “The Unprepared Caregiver: when care meets love” (unpreparedcaregiver.com).  The blogger is communications professor Zachary White, PhD.  He cared for his mother with a terminal cancer diagnosis.  He started blogging about being “totally unprepared for the experience of caring when the best trained specialists and doctors said there was nothing more they could do for his mother.” He doesn’t post frequently.

In a post from December 2016, Dr. White writes about caregivers not having an enjoyable “bucket list” to talk about during their gatherings over the holidays.  He says:

“Here’s why our experiences as caregivers push us to our limits but probably won’t receive much attention around the holiday table this season:
* There is no training manual for our care.
* There is no safety net.
* Our experiences are beyond pictures.
* It changes you.
* It’s not on anyone’s bucket list.”

Here’s a link to the full blog post:

www.unpreparedcaregiver.com/2016/12/beyond-the-bucket-list/

Beyond the Bucket List
by Dr. Zachary White
The Unprepared Caregiver
2016 December 7

Robin

 

Ongoing Traumatic Stress Disorder (suffered by 24×7 caregivers)

Gobal Genes (globalgenes.org) is a rare disease patient advocacy organization.  In the Rare Daily section of its website, it posts stories and news articles.  In this story from October 2013, Terri Corcoran, affiliated with the Well Spouse Association (wellspouse.org), writes about OTSD, Ongoing Traumatic Stress Disorder.  This is the type of disorder suffered by caregivers on duty 24×7, as many spouse caregivers are.

Here’s a link to Terri’s story:

globalgenes.org/raredaily/the-spousal-caregiver-otsd-ongoing-traumatic-stress-disorder/

The Spousal Caregiver: OTSD (Ongoing Traumatic Stress Disorder)
by Terri Corcoran
RARE Daily
October 2013

Robin

 

“Caring for the Caregiver” (don’t forego enjoyable activities)

This is a good article on self-care for the caregiver:

hospiceofwestchester.com/project/newsletters/9.pdf

Caring for the Caregiver
by Mary K. Spengler, MS, Chief Executive Officer, Hospice of Westchester
Hospice of Westchester Newsletter
Fall/Winter 2016

The author’s final point is: “Perhaps most importantly, caregivers should not forego enjoyable activities.”

Robin

 

“A Mother’s Strength” (article about PSP)

In December 2016, Sylvia Rupani-Smith posted a story to the website Medium (medium.com) about her mom having a “terrible disease,” progressive supranuclear palsy (PSP).  In the article, Sylvia reveals that her mother has a tracheostomy tube; she is perhaps attached to a ventilator.  The story is copied below.

medium.com/@sylviarupanismith/a-mothers-strength-9f36240a7bb1#.q3g0pr8t5

A Mother’s Strength
by Sylvia Rupani-Smith
Medium.com
Dec 9, 2016

The author’s name may be familiar to some of you.  In October 2016, Sylvia wrote an article in the New York Times about her mother’s journey with PSP.  Here’s our post on that article:

www.brainsupportnetwork.org/psp-story-falls-were-bad-diagnosis-worse/

Robin