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If you feel down and useless today: Chronic Illness and Chronic Pain

If you’ve been glued to your couch or imprisoned in your bed because of chronic disease or intractable pain…then you may feel trapped, hopeless, even useless. Are you getting tired of staring at the same 4 walls and know that you’ve been made for more?

Whatever you’re feeling right now, your feelings are completely valid given everything you’re going through. Whether you’re feeling depressed or hopeless, frustrated at doctors, even angry at God, all of those feelings are understandable and very difficult emotions to process.

You’ve lost so much in the battle with your health. It’s okay to grieve over your life, and grieve the loss of your health. You built a good life, and the threat of physical invasion is more mentally overwhelming than anyone around you could possibly realize. You didn’t choose this battle, but you’re in it nonetheless.

It’s important to give yourself permission to mourn the things you’re losing. That’s what people mean when they say “be kind to yourself” or “give yourself a break.” Self compassion isn’t the same as self pity. In fact, self loathing begins to dissipate when self compassion enters the picture. If you would show love and tenderness to your daughter or grandmother in your situation, then do the same for yourself. You’re worthy of that care. Dig deep and find understanding and patience for yourself (even if other people around you haven’t).

When we say chronic illness is a “battle,” that’s part of it. Being a warrior is choosing to treat your body with patience instead of anger- even though you may not feel your body deserves your understanding for how it has betrayed you. Being a warrior is giving yourself dignity simply because you’re human, and worthy of it no matter your health or ability status. Being a warrior is staying in this game of life, even when leaving feels like your only option. Of course, battling chronic illness refers to the rigors of healthcare and living through the “hell” in health, but it also refers to giving understanding to the people who don’t understand us in return.

Then, consider finding something constructive to do from exactly where you are. Whether that’s offering to moderate in your favorite online support group, or taking a free web course for something enjoyable (see Domestika.org), getting involved in a weekly Bible study online with a friend (see YouVersion app plans), an online book club over zoom, or getting into a new hobby that you can do laying down.

I know your brain is pushing back with all the reasons you can’t do it, and may already be making you feel that it’s a pointless cause, etc. That’s the same part of your brain that likes to tell you that you’re lazy, and says that no one actually cares about you– it’s just not true, my friend. You’re not lazy, you’re ill. People do care, but they may not know exactly what you need right now. That ugly little gremlin in our brains is a straight up liar.

Just find one new thing, and try it out temporarily. You don’t know where it will lead, who it will impact, and how one small change will help you in the long run.

Your job never defined you in the first place. You are still you and you are still on your journey ❤

You are loved. You are not alone. Please take good care of yourself,

Mary

***

Join us at the disabled art share group Chronically Inspired on Facebook where we share our adapted projects, and encourage each other to get back into doing the things we once loved.

In a time of Crisis…. Managing stress during covid19


Art bt Ruben Irelandartwork by Ruben Ireland

In the past, I’ve written on rare disease and adjusting to life after becoming homebound. As the world learns to cope with the reality of life at home, threatened by a terrifying virus, and concerned for what the future has in store, this is the only topic I’m compelled to write about today.

While we live under the shadow of Covid19, how are you handling the images in the media? How are you coping with social distancing, and isolation? Have any of your family or friends tested positive?

Here we’ll be discussing some of the feelings that come along with heightened stress, and why it can make our lives seem out of control.

In a crisis, the natural reaction is to feel shocked, upset, overwhelmed, concerned, confused, sorrowful, and/or physically agitated. If these feelings sound familiar to you, then take some small comfort in knowing that you’re reacting like a healthy, normal human being.

Though these feelings can be physically and emotionally difficult, they are completely understandable under the given circumstances.
On the flip side, if you were living without a care in the world, then one might wonder if you understood the gravity of the situation. Staying in denial might feel better temporarily, but it can lead you to take dangerous risks for yourself and your family. Failing to grasp the seriousness of our situation may lead you to go as far as spreading misinformation or even the virus itself.


Concern serves a purpose and it’s the appropriate reaction for survival. Concern can be a very useful emotion, and keeps you more alerted to possible dangers.

We generally try to avoid or ignore our concerns and feelings of stress, but in a crisis situation, remember that feelings of anxiety are there to serve a purpose. It’s perfectly understandable to be worried for your loved ones. It shows a heart of compassion; it can drive you to check on the people you care for, to listen to local authorities, and to go the extra mile to keep your family safe.

Everyone is sorting through their own unique life circumstances due to the “Stay at Home” orders. If your regular routine has been interrupted by the quarantine, then you’re even more likely to feel the pressure. When you lose control over your plans, you can begin feeling as though life has become chaotic, and you’re helpless to change it.

Losing your workday and regular routine can also cause confusion, feeling a loss of accomplishment, lack of motivation,  and feeling a sense of uselessness. Being alone with your thoughts in isolation all day removes your typical daily distractions which can make stress seem even more pronounced!

These are distressing times, and the images in the news can play up our worst fears. It’s the media’s job to capitalize on the most distressing images and stories- the ones that grab our attention, and get our adrenaline pumping. I would caution anyone from watching too much broadcast news. Especially if you’re home with access to the news all day; it’s guaranteed to pump the volume up on your stress. The same goes for unsubstantiated conspiracy posts on social media which are meant to tap into your deepest fears.

In the moments when anxious thoughts flood your mind, logic won’t always prevail. Your survival instincts can begin to override. During periods of crisis and high stress, you may find yourself in “Survival Mode” (Fight-or-Flight).

If so, you might be experiencing: nervousness, sleeplessness, bursts of adrenaline, agitation, excessive loneliness, intrusive thoughts, racing mind, mood swings, sudden bouts of exhaustion, and confusion.


In survival mode, we instinctively want to fix things. We feel the need to actively find solutions, which is a great motivator, however, it can also lead to feeling helpless if we don’t have ways to exercise these desires. Feeling helpless combined with high stress and isolation can be a slippery slope to feelings of worthlessness. If you have a family member with a history of depression, try to check in with them during this time, and let them know how much they mean to you ❤


You may not be able to find a cure for Covid19 or go back into work yet, but using your energy to do a hands-on project at home will help you get a better sense of control, and therein begins your new routine.
Building a new routine at home will help you feel more in control. Building a routine can be as simple as getting up at the same time each day, making breakfast, and limiting your screen time.

On that note, I would encourage you to avoid the common terms “positive” and “negative” emotions, and instead give yourself permission to feel whatever you’re feeling. Specifically, labeling emotions as “negative” can make us feel as though sadness, loss, heartbreak, and frustration, are somehow forbidden. If we view our most challenging feelings as “negative,” it can unintentionally, cause a sense of shame or wrongdoing. Though some feelings are uncomfortable, they help us learn, grow and build character.
Acknowledging our full experience, however difficult, can also allow us to have more empathy and compassion for others.

Seasons of struggle have a way of making us feel alone inside of our pain. If it seems as though no one understands, if you’re feeling withdrawn, depressed and/or have a sense of doom, I would urge you to contact a counselor through an online therapy app. Please take good and gentle care of yourself! (You’re the only beautiful you that we will ever have.)

We should all try to reach out to our friends and family by video chat during this quarantine for some social interaction, get some fresh air, and find creative ways to connect with one another (safely) online.

If you’re staying at home, and observing social distancing, I thank you personally on behalf of my immunosuppressed self and all of us who are at higher risk. After almost 9 years, I understand that the idea of being confined to your home can at times sound like a prison- to be given boundaries you can’t cross. But this boundary is to keep you safe, to keep the virus out, not to make us feel trapped or alone.

This season will be over soon. For now, let’s make the most of this time and try to be the best versions of ourselves we can be in the face of hardship. Reach out, check on your elderly friends and those with disabilities and chronic illness, since they may have difficulty getting basics. Caregivers and delivery programs may not be serving them right now, so an offer to help might be appreciated.

Most of all, I want to remind you that you’re not alone. The entire world is going through this difficult time collectively.  Thank you for continuing to help your community by staying home, and remaining socially distant. It’s a sacrifice you’re making for the greater good!


Keeping our healthcare professionals, essential workers, and all those fighting this virus in our prayers and on our hearts. Also praying for the safety, health and healing of our brothers and sisters around the world. Let this be a time of community, understanding, and finding more gratitude with every passing day. We hand over our fears and uncertainties, trust the future to you, and plant our feet in your eternal hope. Amen.
God be with you.

Thank you for reading. Take good care, and stay well. -Mary


More resources:

How to manage anxiety in a changing world

10 ways to deal with big changes

25 ways to volunteer from home

Learning Resilience and Optimism

Learning Resilience and Optimism. Coping with chronic illness.

Did you know that being positive isn’t necessarily the same as being optimistic? Did you know that your methods for coping with stress might be hurting your health, even if they make you feel better?

There was an entire revolution in psychological treatment called “Positive Psychology” which began after the book Learned Optimism changed everything in the 90’s. Before that, psychological practices were geared toward treating severe functional mental illnesses.

The author of the breakthrough book, Martin Seligman, asked the question, why aren’t people fulfilled and thriving when we know more about human behavior than ever before?

Because he challenged the field of behavioral sciences, an entire branch of psychology became dedicated to helping (otherwise normally functioning) people become their best selves.

In his book, Learned Optimism, he discusses the surprising spike in depression, anxiety, suicide, and drug addiction when we live in a happiness-driven society. He believes it is much more than simply public awareness of mental health driving the rise in diagnoses.

In his book, he explains that children were once taught how to overcome obstacles, how to cope and persevere, however the focus in education has instead shifted to boosting self-confidence regardless of effort. Seligman theorized that the self esteem movement, which was standardized in classrooms around the country during the 80’s and 90’s, played a major role in changing the way early childhood minds develop and learn coping strategies.

One point that I found particularly interesting is that he proposes individuals of prior generations (Boomers and earlier) were raised to believe they were surrounded by an invisible support system.

Today, that sense of strong community doesn’t exist for most young people.

In the past, there was a sense that one’s support system shared responsibility for every success and failure. This support system contributed to the overall person that one became. Since there was an awareness that outside forces had a hand in their lives, when their hard work did pay off, they were happy to share their triumphs and celebrate with their circle of support. Likewise, when their attempts failed, they wouldn’t fall too far or stay down too long as they had a safety net ready to pick them up and get them back on their feet. Just as the successes were shared, the devastation of each loss fell not only on one person’s shoulders, but they shared it with their community.

In the past, community looked quite different than our version today. For most people, that community consists of acquaintances we selectively share information and photos with on social media. The community of today may give approval, encouragement or compassion, but is often lacking in deep supportive relationships and the accountability that Seligman discusses.

Americans once valued country, faith in government, religion, family, patriotism, even the President. People were raised connected to a personal faith in God; organized religion provided another strong support structure of people they viewed as their second family. They were inclined to make life long connections inside of their schools and residential areas where they were urged to be active citizens. Above all, the nuclear family was once the cornerstone of society.

Just the sheer idea that others believe in you can be the difference between a devastating pitfall that derails your life and a curve ball which you can bounce back from. Today, most don’t grow up ingrained with the same surrounding support system, lasting personal connections, or strong faith in God and country.

To clarify, I would personally never want to go back to those days, but learning about these changes in our community structure helped me understand how we see the world so differently, and why we might be developing such vastly different coping and social habits from our parents and grandparents.

We are independent. Our successes are our own to take pride in and celebrate. Most learn to have faith and rely only on themselves. There is great emphasis on self-determination, therefore we reap our own rewards when we succeed. But on the downside, our tools for coping with inevitable life failures and day to day stresses may unfortunately be lacking. We are taught that personal responsibility and success are absolutely everything, but when we fail (as we all do), the personal fallout can be emotionally and psychologically devastating…even traumatizing.

I was working on my Learned Optimism piece when I read an article on Resilience, and was surprised to find that the number one quality suggested in becoming more resilient is to create the same types of communal support that past generations grew up with (as Martin Seligman found).

Surrounding yourself with close connections, friends, family members, becoming more connected to faith, plugging into community, and making permanent, lasting relationships with “people who affirm you, recognize your strengths, natural, innate abilities, and provide the support and acceptance you need” will increase your resilience [Mary J. Yerkes].

More ways to become more resilient:

-Accept “good enough” instead of expecting perfection

-Focus on the things you can control and let go of the things you can’t

-Find deeper meaning in life

-Accept advice from your loved ones and those who know you best

-Take care of yourself

-Ask for/accept help

-Don’t be surprised when life changes suddenly

-Have faith that things will eventually get better

-Set goals you can achieve

-Laugh!

Being resilient isn’t about silencing yourself through turmoil or ignoring your emotions, but resiliency is a method of utilizing multiple positive coping strategies along with a mindset that is always ready to “roll with the punches.”

Martin Seligman writes, “If we habitually believe, as does the pessimist, that failure is our fault, it will undermine everything we do.”

Pessimists feel personally responsible in all success and failure, and helpless to make changes. This thinking leads to tendencies for depression and anxiety. Chronic pessimists are also more likely to have health troubles later in life, according to research in behavioral science.

Does this mean that society’s focus on self-reliance and self esteem could be creating generations of pessimists? I don’t know if that’s true, but it would be very ironic in our happiness-driven, positivity-focused culture.

The good news is, both Resilience and Optimism can be learned!


Read the rest of this entry

Grieving with a Chronic Illness

This 20-year-old blogger and survivor of multiple chronic illnesses describes her grief process. You may be surprised to see that even on a somber topic like mourning loss of health, she writes from an outlook of gratitude; below she shares why she chooses her approach.
If you like this post, check out the article she wrote last week- it will give you a boost of inspiration!

Life with an illness

With a chronic illness, there is no cure. It is all about treating the symptoms and learning to live life with it. It’s like an enemy you can’t get rid of. Its hard to cope with at times. For me, I was working, in college, and training for a half marathon, and one day it hit me like a truck. Within 2 days I was in the hospital. So going from constantly on the go and enjoying a normal 20 year old life to daily appointments, constantly miserable, and not being able to take care of myself alone. Its normal to have grieving stages while being sick, here are ways I grieve with having several chronic illnesses.

  • The anger phase.

Its okay to be angry, I completely understand this phase. I’ve lost a lot like my job, a lot of people in my life disappeared, and I can’t do a…

View original post 538 more words

Love Yourself Hard

Get ready to be inspired. (Grab a tissue). Had to re-blog this:

Susan Cottrell & FreedHearts

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My darling friend (codename Salarcon) is consistently more joyful than many of us put together. She has her struggles, as do all of us, but she has an incredible peace in the midst of those struggles, as do few of us.

She is also a Poetry Slam Goddess and host of a new YouTube poetry program, and her recent poem (below) is about joy — whatever the circumstances.

Life is short, my friends. Whether you are concerned about your orientation or you child’s, or falsely afraid that God does not love you or approve of you, or afraid you somehow do not deserve to be at the table with everyone else, please. You don’t have to do that to yourself.

It’s time to love yourself… hard.

Enjoy Salarcon’s poem… ❤

 “I’ve got sunshine on a cloudy day

Whether it’s cold outside I’ve got the month of…”

May 3rd

Amanda dances…

View original post 381 more words

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