Trust God in Managing your Invisible Illness

I want to write, but I have been struggling with brain fog. And for this blog, I've been struggling with how to frame the the topic I want to write on which is that of invisible illness. 

I don't want to make the post all about me. I kid you not, the first draft was all about me. And writing it was helpful--to me. But you'd be bored. 

The point of this blog that I've been adding to now for 16 years, was initially to advertise my services as a Christian Life Purpose Coach. As my work in that area waned, my purpose for blog posts became about promoting my ebooks and generally trying to encourage others. 

God has called me to be a writer first and foremost and to use my gift of encouragement where I can. I try to focus on pointing women to greater trust in their creator, to offer them other perspectives I hope will bring clarity, to help them tap into joy, and to see their own life purpose as they choose to serve God. With that in mind, let's talk invisible illness. 

Let me be clear, there are MANY invisible illnesses and conditions women deal with. You would never have seen the terrible PMS or PMDD. You wouldn't see my headaches, my muscle pain, my eight-month-long face pain, my torn knee ligament, my tinnitus, my fibroids, my type 2 diabetes, and so on. These were challenges God knew about but allowed. And I took on every one of them and walked through each challenge.

Chronic Fatigue Syndrome

I had suspected for years that I'm not built like so many other women are. I have boundless ideas, but not boundless energy. I might have in my younger years, but as time has passed, my energy has waned. I became even more aware of the fatigue over the past three or four years (and, no, I have never had the Covid virus). 

I've now been through numerous tests ordered by my doctor to check for possible causes for my fatigue. All else has been ruled out as a possible cause so, while he didn't give me the official Chronic Fatigue Syndrome (CFS) label, I'm adopting it as I've studied the symptoms online and mine measure up. I told my doctor "I will manage my fatigue." 

God Reveals 

I've heard it said that God reveals what he wants you to know when he wants you want to know it. And now, with the revelation of CFS, I understand so much more. 

I see why driving an hour in 2014 with my sister who likes to talk exhausted me. I was sitting in the truck not driving, that shouldn't be stressful, right?  The meeting we were headed to would be stressful though for both of us. But now that I've learned more about CFS, I see that socializing or merely listening to someone for an hour each way in a truck can be a trigger of CFS as mentally taxing situations can lead to physical fatigue and post exertional malaise (PEM). 

I see why I had to ask guests to go home after they'd been at my home for a swim for several hours. I was done. I see why after going to church on Sundays I wanted to sleep the rest of the afternoon. I also see why we stopped going to church Sunday mornings, because getting up, showering and being attentive for over an hour was becoming more and more taxing. 

I've learned through the study of CFS and in forums with others who suffer with such, that showering can be exhausting. I noticed that without anyone mentioning it first. Showering, washing my hair, drying it, and styling it are a quadruple whammo for me. 

What I mean by whammo is it puts my body into  Post-Exertional Malaise (PEM).  The feeling I get when in PEM is much more than simple fatigue as I might expect from aging. It is not about being lazy (as I sometimes blamed myself). It's about more than a blood sugar crash. It's about being wiped out. PEM means I get exhausted and need to lay down usually falling asleep.

Some who struggle with PEM have described it as feeling as though there is a poison in their body. And I know what they mean. I've also had that feeling.

And the only cure is to rest.  

Up until now, I have spent years questioning what was wrong with me. I tried supplements. I exercised thinking if I could just get into better shape I'd have more energy. I dialogued with a naturopath. I studied adrenal fatigue, parasites, and more. 

For years, I lived with a stronghold that I should be out working a regular paid job not working from home for peanuts. Another stronghold was I should be able to do volunteer work like so many other women are. And another: I should be losing weight after all my exercise, not gaining weight! (that's another blog topic.)

I did apply for many outside-of-the-home jobs. And doors didn't open. One I applied to would include doing home care for seniors. It seemed logical one day, but the next I realized I could hardly manage my own housework and yardwork without ending up wiped out with pain in my back and legs. I was experiencing post-exertional malaise (PEM) without having a name for it. 

I simply assumed I was a flip flopper with no commitment to anything new. But God spoke to my gut and said, "not for you, dear." 

I now see what God knew all along (that I was struggling with CFS) which is why he gave me such a supportive husband and the desire to stay home to raise my children and to work from home. God spared me from excess exhaustion.

I see now I was not a failure, I was not too incompetent to get a fulltime job, I was not being lazy, I was not a bore staying home so much. My fatigue was about more than not being in good enough shape physically. I was simply struggling with hidden illness.  

We don't always see why God has us where He does. We don't see why our path is different. We don't always understand why doors don't open for us. But if God allows, we will see how perfect our life really is.

"God will perfect that which concerns us," (Psalm 138:8).

I always want to do more than I can. My imagination is huge and creative. I do have good days and accomplish a lot. But I have just as many days of fatigue where I have to push myself, or stay in bed!

My goal as I walk this revealed journey is to stop being hard on myself. I start each day asking God to help me use my ENERGY in the best ways possible. 

I am being kinder to myself. I have learned I need to adjust my expectations even more as I PACE myself. 

I have learned sitting around doing what seems like nothing is okay. 

I still do gardening and yardwork, but I do about a quarter of the amount I might have years ago. I tell myself to walk slowly, to putter, and to skip extra trips back and forth the the garage to fetch things. 

I could go on and on, but I won't. I'm fortunate my CFS is somewhat mild to moderate and not severe. If you suffer from chronic fatigue syndrome feel free to share in the comments or to email me your story. 

A Unique Spiritual Practice

 Taking Steps out of Hibernation

For much of the fall and winter, I'd been in a season of rest. Have you too? 

Last September, I heard God nudge me to embrace this concept of rest and I came up with the acronym 'Rebel' as noted in the photo. 

Be a REBEL - to rest, recover, restore, and just be (for a season).

Breakdown of what 'Be a Rebel' means.

Amidst the resting (and I did a lot of that), I created more art, used my new stretching table at home for exercise, visited social media regularly, learned more about gardening and art, and decluttered various areas of my home. 

Grief and Needs

Through this time, God taught me a lot about pacing myself, being patient, and helped me identify the role grief and unmet needs were playing. See this blog post for more on that. 

As I desired to step out more with the turn of the calendar, I invested in a new self-care habit. My massage therapist installed an infrared sauna in her salon. (It was an idea I'd suggested to her.) Coinciding with my church's New Year's prayer and fasting suggestion, I decided I would use the sauna for prayer and self-care. And, I hoped it would bounce me out of some Season Affective Disorder I felt after the Christmas season. (Especially since we are no longer gathering with extended family and had been home much of the time.)

The results were immediate where my depression was concerned. And, the prayer practice was eye-opening. I learned how easily distracted I get. I saw I might have ADHD even. And so, I disciplined myself to have a silent sit with God for the full sauna time. It was great. And I felt spiritually renewed after too. 

No, we don't have to go into a sauna to pray. Prayer and meditation can be done in many places. But I like the therapeutic benefits sauna gives me too. It's a time for just me to get away out of the house. 

 

Is it Grief, or is it Unmet Needs?

 

Last year's sedum and petunias 
in my garden

ON GRIEF:

Posted by "Mindful Christianity"

In one of my ebooks, I mentioned grief. I emphasized we grieve many things throughout life, events as simple as dropping a delicious sandwich on the floor by mistake. The grief, in that case, is momentary. And then there is more long-term grief due to the loss of a loved one or a beloved pet. 

Today, I'm delving into the topic of grief, drawing from my own experiences with it over the past seven years. Through introspection and writing, I find clarity and understanding amidst the tumult of emotions that come and go. My hope is that by sharing my journey, it may resonate with you as a reader, offering insights and comfort along the way

Multifaceted Grief Experiences

Grief is a multifaceted journey, weaving through the fabric of our lives in various forms. In 2018, we lost my husband's mom. It's not so much the loss that bothers me since she was in her 90s, it is remembering the difficult details we walked through with her in her last couple of years of life. Now, we grieve the loss of family gatherings as we once knew them with 'gran'.

In 2019, I lost my beloved dog of fourteen years. We walked through stress prior to her final day as well. I was the main dog walker so now I grieve the memories of our many walks together.

Then, in 2020, I lost my mom. Also, in her 90s and still living in her home of 55 years, her body finally gave out due to heart failure. She was lucid, upright, but ready to go as catching her breath was becoming more difficult. We grieve the loss of this grandma too, and now both my husband and I are orphans with no living parent.

Pandemic Grief

Another form of grief the entire world faced has to do with the changes that occurred during the Covid-19 pandemic. For some, jobs vanished, businesses shuttered, and the normalcy and relationships we clung to dissipated like smoke. I don't know about you, but I haven't fully rebounded yet.

The Grief of Transition

Then there's the grief of transition—the bittersweet farewell to a career at retirement age realizing that opportunities for new beginnings wane as the years advance and jobs are given to the younger set or ended due to technology takeovers.

Children leaving the nest heralds a different sort of loss, a nostalgia for the bustling energy of family life we once knew.

I've traversed through a myriad of these upheavals in the past seven years, each one carving its own notch in my heart. Coupled with the natural ebb of dopamine that comes with age, life can feel like a shadow of its former vibrant self. At least, it has for me. And I'm taking small steps forward to shake it.

Plodding Through

Amidst the melancholy, though, glimmers of solace emerge. For instance, I had prayed for months for guidance on finding a new fitness group to join. I spent hours searching online for a suitable program. Finally, the end of February 2024, God answered that prayer. My new exercise classes, with mostly older men and women, have been a lifeline and shining light in my journey.

Watching favourite TV shows, planting flowers seeds indoors, and indulging in art projects has provided respite over the wintertime for me. But alas, I still feel restless which led me to consider if more than grief is going on.

Restless Feelings

As I've worked on this post, I've uncovered a pretty significant reason for my restlessness. It has to do with lacking significant connection and having unmet needs.

In grief we sometimes isolate. The pandemic forced us to isolate. As a result, many of us lost contact with our people. We are having to rebuild connection. And that's nothing new because all through life we have to rebuild.

I've not only uncovered my own unmet longings for connection, but also for meaning and fulfillment. My paid writing gigs slowed during the pandemic and Chronic Fatigue Syndrome (CFS) often contributed to brain fog so I decided to call myself semi-retired and step away from pursuing work.

I hoped adopting that title would take the pressure off, but adding on a significant birthday marker has done a bit of a job on me. I'm trying to enjoy myself, rest, and relax, but I still crave ways to be useful.

An Epiphany about Needs 

Working on this post has led to a great epiphany for me personally. I am aware of how essential it is I acknowledge and validate both unresolved grief and unmet longings. They are both valid and deserving of attention and support.

Google Images

In high school sociology class I learned of Maslow's Hierarchy of Needs (pictured above). It's not as though I've been unaware of the importance of having these needs met. But I know all too well, they often aren't met. For myself, an introvert and melancholic, meeting them is like trying to keep balloons in the air.

Having been trained as a Christian Life Purpose Coach®, I am intimately familiar with the profound yearnings women harbour for a sense of purpose and the deep desire to witness tangible outcomes from the expression of their passions. We yearn for a holistic sense of well-being encompassing our body, mind, and soul no matter our age or life stage. The needs are many.

Goals Toward Wholeness

Through my research, I was able to construct a list of needs I'd like to have addressed even as I process grief. My list includes these:

• Affirmation
• A Feeling of Community
• A Sense Connection and Belonging
• Being Noticed
• Being Understood
• Fulfillment
• Gratitude
• Joy
• Love
• Meaningful Activities
• Meaningful Conversation
• Purpose: Contributing to Something Larger than Self
• Recognition
• Significance
• Spiritual fulfillment
• Wholeness

What can I do with this list?

What can you do with this list?

The above can become a prayer list. 

The above list can become an action list.

The above list can become a values filter for making future decisions. 

Holding on to Hope and Faith

I hold onto the hope that with the thaw of winter's chill and the bloom of spring, my spirits will lift especially as I take one step at a time as God opens my path.

Longings for connection, purpose, and all those items on the above list represent fundamental human needs that make up our very SOUL. And when our SOUL is healthy, we have peace and joy.

And when our needs go unfulfilled, we can feel lonely, dissatisfied, and sad--feelings that mimic grief.

The journey toward finding solutions takes time, patience and self-compassion. First comes awareness, then comes a journey of taking steps no matter how small.

Will you go on such a journey too?

Remember to ask God to lead the way. Celebrate your progress, no matter how small, and be kind to yourself during moments of difficulty or setbacks (which there are sure to be). Your well-being is worth the investment!

Do You Get Caught Up in the Game of False Guilt?

Do you find yourself often saying "I need to . . . " or "I should..."  (fill in the blank).

We have many needs. Some are real. We need housing, food, water, clothing. We also need relationships, wisdom, and balanced mental health. We need exercise, to clean our home, and to buy groceries.

Other needs are fabrications; you see a TV show and you covet what the actors are doing and their fictitious relationships. You read online articles about others and wish for their life. You scroll Facebook and start comparing yourself to others.

It's important to live in reality--in the purpose God made you for--and to recognize fantasy, coveting, and worldly voices when you come across them. 

When you say "I should..." that's another example of being tempted into a life other than God has planned for you. It's like living under a harsh taskmaster. The word "should" is a control word when used against others. When you say he or she or you should be doing... it implies that you think you know what another person should be doing or that you're not doing enough.

Put your should in check. 

God is graceful, gentle, peaceful, and doesn't care about half the things you think you or another person should be doing. God can nudge you or another person with the plan of action he has in mind and speak directly to you or them. Are you patient to wait for him to do that? 

It's easy to fall into a mindset of guilt and pressure, criticizing yourself for not doing more, not eating better, not getting enough done in a day, and so on. No, we aren't to be lazy or inactive. Faith without works is dead. But acting in faith over force is much better.  

Choose peace, pacing, and gentleness as you go through your day. Put down false guilt, and don't throw false guilt onto those around you.  

The Half-Life Reflection

I've been following some interesting stories on Twitter X where victims of abuse are finally telling their stories. There is no timeline as to when a person becomes triggered by a past experience or sees a need to share their story. There is no timeline for when a memory returns.

Often, a person sees a why for telling their story. They feel sharing the details will help them release the final remnants of the memory. Something in them wants others to know what they went through. And I agree with this as I have felt that way at times as well. I also agree with the idea that memories can fade to trick us over time. So we must be careful in the story we tell.

Some of the events being shared on Twitter happened years ago. At the time, with no social media to broadcast on, individuals handled life alone unable to pay the cost of therapy or unable to get past the stigma attached to "seeing a shrink". Or, they did not fully understand the issue then, but gained clarity later in life.

As for social media--in some cases, it didn't exist at the time of a person's trauma. Now it is our community centre.

*The World Wide Web became available April 30, 1993
*Google was founded on September 4, 1998
*Facebook was created February 4, 2004
*Twitter was created in March 2006

A story told now that is 20, 30, or even 40 years old is not any less vital to tell than one that just occurred. Or do you disagree?

An acquaintance of mine is sharing her story on this blog and in a memoir she wrote a couple of years ago. Perhaps you will support her by reading her story.

What story do you have to tell? Have you written your story into a blog or ebook? Have you shared it on social media or with a professional therapist? Is it time to share those details?