Balancing Stress

How do you balance taking care of your health with all the other stressors of life?

Balance is something that I never really learned in my childhood. Aside from the physical balance of riding a bike, which I finally did on my honeymoon, I didn’t learn to balance other things. I was, for all intents and purposes, an emotional toy for my mother.

The biggest balancing I did was trying to keep her sane. In the end, I learned that no one person can do that for another, and we had to part ways. That separation did wonders for me, though. I have learned so much more about myself since May 4, 2014, than in the previous 26 years of my life.

It also eliminated a major stressor for me – trying to fix my family. I no longer had to expose myself to racist, ableist, discriminatory comments to try to help others. I could just help people who actually wanted and needed that help. I stopped trying to stage interventions. I stopped spending precious energy on a black hole.

For the first few months, this created slightly more stress. I had fear about Mother and her husband lashing out. We moved shortly after this without giving them our address, so I feared they would find me. I feared being cornered by all of that hatred and unpredictable anger.

After my wedding, after dancing with my husband and eating cake and feeling so much love, I knew that I was in the best place of my life. My anxiety and depression are more under control today than they’ve ever been. My PTSD has had ups and downs but is manageable.

In eliminating that major stress from my life, my health issues improved dramatically.

I have no doubt that learning how much of a badass I am, how to advocate for myself, and how to stop making health care mistakes helped. I don’t think, though, that these steps would’ve been possible without standing up for myself at the core – without eliminating so much ick from my life.

All of these things led to me finding a rheumatologist who ‘gets’ me. She’s hip on research, patient advocacy, and patient data.

And she put me on Kineret which has completely changed my life.

I have to balance my stress, stay physically active, and be right on top of my medication schedule and the like.

If I don’t, I wind up hugging a foam roller, crying, and generally feeling like death.

Therapeutic Thursday: Swimming Class

This month I took my first-ever swimming class.

I was so anxious before the first class on the 9th. I couldn’t sleep the night before though that’s been the norm lately too so maybe it’s unrelated.

I had panic attacks upon panic attacks in the days beforehand.

I should have learned to swim as a child. My uncle tried to teach me for a while when I was maybe eight? Life got in the way. Had I been in real school versus being “homeschooled” I would have learned; had I lived in a non-abusive home I would have learned.

The class itself went great! I did better than I thought I would. But it brought up so many emotions, so much resentment. I am so disappointed with choices that were made (or not) for me as a child.

I’ve had to teach myself medical terminology in a rapid amount of time. I’ve had to learn how to navigate insurance quickly. I’ve even had to deal with LITERALLY rebuilding parts of me that should never have deteriorated in the first place.

I tackled riding a bike on my honeymoon.

Swimming has been the last big issue, the final sticking point regarding my maltreatment in my childhood. I’ve worked on everything else, just a bit, already.

This is the final way to throw the motherly shackles off, to kill the fear monster she created, and to take back my life fully.

I could never do it without T and my sister, never.

 

Terminology Tuesday: HAIs

An HAI is a pretty common occurrence sadly, and they can be horrific and deadly.

Healthcare Associated Infections can occur whether we simply visit our primary care physician, have an injection, or have a major surgery. According to the Office of Disease Prevention & Health Promotion, the majority of HAIs are UTIs, surgery-related, bloodstream-related, or pneumonia. The CDC notes that C. diff is pretty damn common as well.

I’ll add that it feels like death from the inside out and has lasting effects.

At least, I finally got my first grown-up IV out of the way

These infections cost people their time, health, and even sometimes their lives. However, most of these are extremely preventable if health care workers follow workflows, execute proper sterilization and cleaning, WASH THEIR HANDS properly, and stop overprescribing antibiotics.

There are things that we can do as patients, as well, to keep ourselves safe:

Thanks, CDC!

These infections have affected people I love in so many ways, but currently, I have a close friend whose family is dealing with the repercussions of an HAI. Randy is an amazing man who wound up with a staph infection as a result of a run-of-the-mill steroid injection. He’s been in and out of the hospital and other facilities since April of 2014.

This is one of the most amazing and sweetest families I know. For this to happen to them is incredibly hard to watch. There’s a GoFundMe for those of you who can help here.

Sources:

http://www.healthypeople.gov/2020/topics-objectives/topic/healthcare-associated-infections

http://www.cdc.gov/hai/

http://health.gov/hcq/prevent-hai.asp


Yoga

Have you ever tried yoga? What is your favourite pose?

I’ve been doing yoga and meditating since I was roughly 12-years-old. That’s the one good thing Cosmopolitan Magazine introduced me to.

Shortly after I started, I could even do shoulder stands. It’s pretty impressive, given my lack of physical activity and the presence of multiple chronic illnesses.

As of this time last year, I stopped practicing for a while. I had awful hip bursitis, and my rheumatologist and I were worried about putting all my weight on some of my joints.

Now that I’ve been through some pretty intense physical therapy, I’m slowly starting again.

For the moment, my favorite pose is probably the bridge (the second Babar down on the right). It helps to strengthen so many of my joints and muscles, something that I desperately need. Doing it with my feet on a pilates ball makes it more difficult, but AMAZING.

Have you tried yoga? If so, what is YOUR favorite pose?

Self-Care Sunday: Exercises in Self-Care

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?

 

Get Freaky Friday: Link Roundup

Sex has long been a taboo topic to really discuss in the United States. I’ve been talking about this disparity between how the United States and other countries address sex & sexuality since I was in high school… so over a decade.

Gross.

The younger generation of Americans is ready to discuss sex. We’re ready to talk masturbation and females enjoying sex – or why they may not enjoy it or have a libido. We’re ready to stop being defined as someone’s partner or ‘extensions of male fantasy‘ and start to be seen as ourselves

We’re ready to make jokes about sex that may seem too real. We need to learn about our bodies and how they react sexually instead of being forced into abstinence-only education that does nothing good for pregnancy and sexually transmitted infection rates. We’re ready to say ‘vaginal atrophy‘ aloud sans giggling at the word vagina. We’re ready to question why there are ads to fulfill those male fantasies but not to truly help women.

Speaking of interactions with others… There are a lot of ways that chronic illnesses can affect our relationships and intimacy, but fatigue is a huge sticking point. If you’re together when that illness hits, it can be quite hard to keep things together throughout the changes. This means that some of us live in a relationship without sex. There’s nothing inherently wrong with that unless each person isn’t on the same page – and that can change.

Sometimes it’s more our depression and ways of coping that affect our relationships more than our primary illnesses.

Ther are many things that can affect our relationship dynamic like the need to discuss our illnesses. How much do we share? Are we complaining to or burdening our loved ones?

Therapists are great to utilize, whether together or alone. Sometimes marriage or couple’s therapy is a great way to visit these issues in a safe place.

Also, sex toys can really help. If you’re interested in exploring some of the bestselling sex toys, check out this collection of reviews.

Don’t forget to join us for #chronicsex chats over on Twitter every Thursday from 7-9 pm Eastern Time!

 

Balancing Guilty Pleasures and Healthy Things

Do you feel like you have a good balance between what is good for you and guilty pleasures?

Honestly? Probably not.

I eat a lot of sweets and other unhealthy foods. Part of it is a habit from growing up. Part of it is the pain relief that pleasures release in our brains.

However, in the last two months, my cravings for such things have died down. I believe part of the reason is that my SJIA and fibro – the two biggest pains in my ass, literally and figuratively – are mostly under control. I simply don’t need that pain relief like I did before.

The other part is annoying. I’m not very hungry anymore. I wasn’t feeling well around the same time this started and that seems to have limited my appetite in general.

I’m learning to listen more to my body, as well. This all came about while I was doing physical therapy twice a week, so being more active I’m sure has helped as well.

In the meantime, I’ve lost about ten pounds. I’m happy to have lost them, but the appetite thing is concerning still.

I generally tend to be very spontaneous versus thinking things through, like Heart from my favorite comic series.

I feel like I have little willpower, which is something I’ve been working on at least. T is a lot like Brain, so I think that helps.

But, I mean, there’s a reason Bat-Heart is tattooed on my shoulder…

I know that I am, like Bat-Heart, a work in progress, though.

 

Terminology Tuesday: Zone of Openness

 

A ‘zone of openness’ is one of the main tenets of patient advocacy & engagement… so why does it sound so foreign to so many of us?

The term itself is fairly new in practice, though the theory has been around since the days of Seinfeld. An article about the PCORI project associated with this term explains the main issue:

In a 1996 episode of the television show Seinfeld, Elaine objects to putting on a paper gown because the rash that brought her to the doctor’s office is already visible on her arm. After she challenges the label of “difficult” that she sees in her chart, the physician refuses to take her rash seriously. A doctor Elaine subsequently visits sees the notation in her chart and also disregards her problem.

Although this scenario was played up for laughs on TV, real-life patients do worry about being perceived as difficult, researchers at the Palo Alto Medical Foundation Research Institute (PAMFRI) learned in a recent study. Patients believe such a label can lead to lower quality care. “We refer to ‘Elaine’ when we discuss this fear,” says Dominick Frosch, PhD, formerly of PAMFRI and now at the Gordon and Betty Moore Foundation.

The zone of opennes, then, is the creation of a space where an ‘Elaine’ cannot happen, where patients’ concerns and issues are fully heard and understood by their physicians, and where physicians act on that information instead of creating negative personality-judgment comments that really have no place being in the chart anyway.

Sources:

http://www.pcori.org/research-in-action/creating-%E2%80%9Czone-openness%E2%80%9D-doctor%E2%80%99s-office

Self-Care Sunday: resources

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.

Get Freaky Friday: Relationship advice from religion & bingo fuel

I’m not generally one to post a lot of religious information, mostly because I’m really not religious. I follow a Buddhist personality, but that’s about it.

However, my husband and I found this article on the Jehovah’s Witnesses website a couple of weeks ago about when a spouse has a chronic illness. Some of the language is ableist in nature I think. Obviously, there is also a little more religion than I would personally love to see, but what can you expect?

Here are some of the main points, though, that I found pertinent to our ongoing discussion of self-love, self-care, relationships, sex, and sexuality with chronic illness:

MARRIAGE can be a challenge, but when one mate becomes chronically ill while the other remains healthy, complications can multiply. * Are you caring for an infirm mate? If so, do any of the following questions worry you: ‘How will I cope if my mate’s health declines even further? How long can I continue to take care of my mate and also do all the cooking, cleaning, and secular work? Why do I feel guilty for being the healthy one?’
On the other hand, if you are the ailing spouse, you might wonder: ‘How can I respect myself when I’m unable to carry my load of responsibility? Does my mate resent me for being sick? Is our happiness as a couple over?’

Sadly, some marriages have not survived the strain caused by a chronic illness. Yet, this does not mean that your marriage is doomed to failure.

Many couples survive and even thrive despite the presence of a chronic ailment. Consider, for example, Yoshiaki and Kazuko. A spinal injury rendered Yoshiaki unable to make even the slightest movement without assistance. Kazuko explains: “My husband needs assistance with everything. As a result of caring for him, my neck, shoulders, and arms ache, and I am an outpatient at an orthopedic hospital. I often feel that caregiving is overwhelming.” Despite the difficulties, however, Kazuko says: “Our bond as a couple has become stronger.”

Rather than assume that you know the best way to show consideration for your spouse, why not ask him or her what would be most appreciated? Nancy, mentioned at the outset, eventually told her husband how she was affected by not knowing the family’s financial status. Now her husband endeavors to be more communicative in this regard.

TRY THIS: List ways that you feel your mate can make your present situation a little easier, and have your spouse do the same. Then switch lists. Each of you should select one or two suggestions that can realistically be implemented.

Together you might take regular breaks from serious medical concerns. Can you still enjoy some of the things you shared before illness struck? If not, what new activities can you try? It could be something as simple as reading to each other or as challenging as learning a new language. Having a life together outside the illness will strengthen your “one flesh” bond—and increase your happiness.

TRY THIS: List on paper the obstacles you face in taking care of your mate. Then make a list of steps you might take to overcome these or to cope with them more effectively. Instead of overanalyzing them, ask yourself, ‘What is the simplest, most obvious way to improve the situation?’

I’ll admit that their use of the word ‘mate’ is odd. I get why they chose that, though.

It’s important during our relationships that we all take care of ourselves, whether you’re monogamous, polyamorous, asexual, or a cis-gendered heterosexual white dude. Self-care and self-love are integral to how we interact with each other. These things color our relationships, how we communicate and interact with others.

I used to get really grumpy when I was hurting. I mean, I still do, but it’s different you know? I used to get incredibly combative and would brood.

Taking my emotions out on others – T, my sister, etc – did not lessen my pain. It did make me feel more like I deserved the pain, however.

It took me a while to realize how this affected my relationships. It took even longer to try to correct that.

The Spoon Theory has really helped. T and I have some code words we use as well, like Bingo Fuel. Bingo Fuel is simply the point where you’ve run out of enough fuel that you must turn back to ensure that you can get to base. T and I use this when we hike or snowshoe so that we can keep track of my energy/pain levels when we’re being active.

That still depends on me to evaluate constantly and communicate that need… which doesn’t always mean that I do this. The idea is a good one, though.

What about you? What are ways you’ve utilized to communicate illness issues better?