I Am Weary — Let Me Rest

(Chronic Fatigue for various reasons)

I am weary — let me rest.

 

The following post about chronic pain and fatigue was written by Christen M. Jeschke. She explains it well and I could relate to a lot of what she said. My question to my readers is: Isn’t this applicable to everyone? It is all I have ever known so it seems normal to me to push myself and then become so drained that I can’t keep myself awake. Don’t we all feel this way? I am interested to hear answers from your experience.

 

Why My Chronic Fatigue Is Like a Cell Phone Battery

by Christen M. Jeschke

 

 

For those of us dealing with chronic pain or chronic illness such as fibromyalgia, autoimmune disorders, or any host of other physical or mental health issues, there is often this one overriding issue that can wreak havoc on our lives and yet be very difficult to explain to the average person. Chronic fatigue.

Chronic fatigue can often be diagnosed as an accompanying symptom or even it’s own separate syndrome – chronic fatigue syndrome (CFS), yet so many people struggle with it and find it incredibly difficult explain to the support people in their lives. Personally, I struggle with chronic pain due to a nerve damage related injury, however, since then, I have also been diagnosed as having both fibromyalgia and CFS. I am constantly exhausted additionally by both pain and medication as are many people are who face the exhaustion of their illness and the side effects of medication.

In 2003, when trying to explain the units of limited energy that someone struggling from chronic pain or illness may have, Christina Miserandino, wrote an essay in which she coined the term the “Spoon Theory.” While this theory does adequately explain things, I find that most people look at me like I am odd when I start trying to explain terms of energy in comparison to spoons.

To simplify it, I like to compare energy to cell phone batteries. Each day, everyone gets a cell phone battery. People without the aforementioned health challenges, get a fully charged, perfectly working battery, charged up to 100 percent. Those of us with chronic pain, illness, etc. are given faulty batteries that are each charged to a lower percentage level.

For the sake of this example, you have the healthy, fully charged battery. Your battery also happens to be rechargeable. You can take a quick power nap, exercise, have a healthy snack – all those things act to charge your battery.

Meanwhile, I was given a battery that was only about 60 percent charged and was thankful for that, because 60 percent charged meant that I was having a better day than usual. My battery is not rechargeable. In fact, all of those things that recharge your battery, just drain mine of energy more quickly. Our batteries also do not drain at the same rate. Since I am sick and you are healthy, it takes me much more of an effort to do average daily tasks. Therefore, that shower that only used up two percent of your battery, used up 10 percent of mine. You went to work and had only used 15 percent of your battery. I went to the doctor and used 40 percent of mine. I used another 10 percent getting the kids picked up from school and then my 60 percent was already gone for the day.

My battery is done and I can’t stay awake even if I wanted to. I try to stay awake, but am in a zombie-like mode until I finally just fall asleep for the night at 5 p.m. Meanwhile, you have worked an entire day, come home and help the kids with their school work, and still have over 50 percent of your battery left. This often leaves the healthy person wondering if the person that is physically struggling is just being lazy when in fact, they truly just have nothing left to give. This can foster resentment and anger if there is no way to explain to the healthy individual what is actually occurring in the individual with the overwhelming fatigue.

Does the person with the limited battery pick and choose their activities? Absolutely, but unlike my example where they can calculate their battery usage ahead of time, they have no way of knowing how long their energy is going to last. They just know that they have a very limited amount of energy and when it is gone it is gone completely. This allows them to prioritize certain things like doctor’s appointments, etc., and save up energy, but does not mean they are being spiteful if they have no energy left to spend at the end of the day. They need to communicate with the people closest to them in their life and find ways to express this and prioritize what is needed.

Can’t they borrow batteries from other days? Technically, yes, if they had something really huge going on and they absolutely needed to expend a great amount of energy, they could borrow a few days worth of batteries, but this is not without a huge cost. For example, they may want to go visit their family over Christmas and need to try to function at a more normal level during the visit (regardless they would still need more rest than the average person). To accomplish this, they may have to take more medication to get through the increased pain this could cause, drink large amounts of caffeine to stay awake for slightly longer periods of time, struggle to comfortably sleep in a different bed, socially exhaust themselves, and expend large reserves of energy that they simply do not have on a daily basis.

Upon their return home, imagine a two to one battery cost ratio. In other words, for every one extra day of battery energy they borrowed, they need to sleep for two extra days time. Their body simply needs this recovery time. For those of us that have lived with chronic conditions for years, we have grown used to building this recovery time in around planned activities or even vacations. However, it often causes a lot of anxiety as well, because you are aware that any significant activity you are going to do will cost you more energy than you have and this can be extremely stressful especially if those around you don’t understand what you are going through.

This loss of energy or stamina often surprises people the most about chronic pain or illness. As a former college athlete, used to working through pain or injuries, there are days where I can push through the pain to accomplish something that is needed, but then like an angry freight train, the pain plus loss of energy just runs me right over and there is literally nothing that I can do about it. There is no working through it. It literally stops me in my tracks and I can’t continue on until I get adequate rest. This is one of the hardest things about chronic pain and illness to experience and to explain as there are so many misunderstandings surrounding it.

Tips for caretakers, partners, or friends of those with limited energy and chronic fatigue due to chronic pain or illness:

Please do not accuse us of being lazy. We are already mentally beating ourselves up enough for not being able to accomplish more. We are doing as much as we can physically do, but we are battling against both our bodies and our waning energy stores. This does not mean that we are any less smart, talented, or accomplished then pre-illness, but we are forever altered and we are struggling to work within our new normal.

Hopefully, this article explains why we seem to sleep so often. It is also very difficult to have quality sleep because of our individual pain or illnesses which makes us even more tired. Pain also makes sleeping at night more difficult, whereas we may be able to sleep better during the day. Therefore, just because we are up late watching “Downton Abbey” doesn’t mean we have any energy at all. We probably desperately want to sleep, but our body won’t let us. It unfortunately holds us hostage that way.

We still love you. Sometimes we feel so bad that we don’t show it and we are sorry about that. Please be patient with us and we will be patient in return. Please remember that we are more than just our illness and we need to find new ways to recognize our talents and passions in our new normal.

We may say “no” a lot, but we still like to be invited places and included by friends. Even if that means having a friend just stop by for awhile for a movie or to talk. We still want to feel included.

Help us plan activities by building in adequate recovery time afterwards and rest time leading up to them. Keep excursions short and not too physically taxing. Building in room for rest or nap times helps immensely.

If you want us to prioritize time and energy for you, just let us know. We may need some advance notice, however, because we need to save up our battery for you. Sometimes, you may feel like we are rejecting you or leaving you out, because we don’t prioritize time for you. However, the truth is that we just might not know that you wanted our time and we are more worried about trying to do things like shower, so you won’t think we smell.

Thank you for sticking by us. You make all the difference.

Bye-Bye Block Editor, Hello Again CLASSIC EDITOR!

Well, I found a way to still access the Classic Editor for posts that are already published, if I want to edit them, and also for posts that are still in draft mode. But I don’t see a way to start a new blog entry with Classic Editor. When I click the button to work on a new post, it throws me straight into this dreaded Block Editor. YUCK!

It says “Type / to choose a block.”

What does that even mean??? Why would I want to choose a block? I don’t HAVE any blocks from which to choose. It’s just me doing writing from my brain. There’s nothing sitting around waiting to be chosen to copy and paste somewhere. Do people DO that?? That sounds absolutely foreign to me. Why would there be an option to do that, as though it were a commonplace occurrence?

And it makes a huge amount of space between my paragraphs, at least here in draft mode. I don’t like that. I’m not seeing a way to reduce the space, either. I try putting my cursor at the beginning of a paragraph, to the immediate left of the first letter, and then doing a backspace, but all that does is pull my new paragraph into the end of the last paragraph. Bleah!

What is this? I hit the slash key and it showed me a drop-down menu with various options. One of them was an icon that looks like a computer keyboard and the word “Classic” beside it. So I clicked on that and it gave me a toolbar under which I started typing within my existing draft.

Does that mean it has put me into Classic Editor? Dare I even HOPE?

Wow, yes, it looks like I am in Classic Editor.

Now, what will happen if I hit the forward slash key on a new line?

/

Hmm. Nothing. It just makes a forward slash.

Oh well, this is cool! I might have found the way to NOT have to use the Blockhead, er, I mean Block Editor. Yaaay!

 

WordPress’s Classic Editor was difficult to say goodbye to. I don’t blog for profit. I can’t rationalize paying for an upgrade from the free version just to continue in Classic Editor. I can’t find a way to get the Classic Editor option back. As a result, I no longer get to write on my blog. I miss blogging. It was therapeutic for me. I didn’t care if anyone liked it, or if anyone even read it.

Daily writing prompt

Describe a phase in life that was difficult to say goodbye to.

View all responses

PTSD and Peace

“These changes are meant to protect you from further violence, but they can also trigger responses that, while understandable, may seem out of proportion to the situation.”

(From this article — Understanding Trauma Triggers and Trigger Responses Caused by Domestic Violence.)

Life will be cruising along at a reasonable pace for many days, weeks, even months, and I think, “Hey, I’ve got this all under control. Maybe the PTSD is gone.”

But then a trigger happens and I am reminded that whatever it is that makes up who I am has not let go of its cautionary response.

Over the years while I was living in a constant state of walking on eggshells, changes occurred within my body and mind as a way to protect myself from harm. Now, in the moment of something new that triggers the responses within me, I don’t even realize they are “triggers” until at least a few hours go by, when my heart rate has returned to normal and my thoughts are less blurred by the latest offense. I can then mull over in my mind what had occurred and the dark cloud over my head begins to have a little lightbulb growing within it. The lightbulb illuminates the reminder: “that was a PTSD trigger response.”

It can help me to talk about the current trigger, but it is difficult to know who to trust with the pain. I feel like “I can’t talk about this. Nobody will understand. It will be diminished, waved off as foolishness, or downplayed with placating words.” That leaves me feeling worse than I felt before I dared to share about it.

I don’t even know what it is that I need when I am in that state. Maybe just someone to hear me out. The overwhelming desire to collapse and cry will eventually pass, usually by the next day after a good night’s sleep. Meanwhile, everything I do is slowed by the stirring-up of pain.

Over the years, I have had a lot of therapy, including many sessions of EMDR (eye movement desensitization and reprocessing), which has helped me learn more about myself and how to better respond to triggers. But the original lessons that were learned remain. When the learned responses are triggered, they don’t know the difference between a real threat and a perceived one. I have the choice, to some degree, on whether or not to let my feelings show — curbing my words and my tone, for example — but that doesn’t erase the sickened way I feel inside.

I liken it to having inadvertently eaten tainted food. The painful results are beyond my ability to control, and it’s up to my body to move the offending substance out.

It seems reasonable to me that my responses are set in place to protect me from further violence. I always think of the example of touching a hot stove and then knowing not to do that again. The lesson caused me to not even have to think about it when I’m around a stove. I automatically do what is necessary to not burn myself. That example, though, is a calm one compared to the response my body and mind experiences when disrespectful speaking triggers the panic feelings that happened when I was living in the trap of domestic abuse.

I wanted to get these thoughts out there. Much more could be said. Maybe you can relate to some of it yourself. If so, I hope you fare better than I do when the triggers happen.

Christine’s Turmeric Coffees

I hate looking at recipes that are full of writing that doesn’t get to the point of what ingredients are needed and how much, so I won’t do that to you here.

Frothy Turmeric Coffee
(for one mug’s worth)

All measurements are approximate. 
This is a forgiving and flexible recipe.

1 scoop of coffee beans (about 2 Tbsp)
4 Tbsp milk of your choice
1/16 tsp Himalayan pink salt (4-10 shakes, to taste)
1/4  tsp to 1/2 tsp turmeric powder
A few twists of black pepper from the pepper mill
1-3 Tbsp olive oil (or coconut oil)
1 Tbsp protein powder (I use "Hemp Yeah")
1/4 tsp organic stevia powder (or any sweetener, to taste)
A few flakes of hot red pepper (optional garnish)

1. Freshly grind your coffee beans. This makes the best tasting and healthiest brew.
2. Heat up the milk in a pot on stove (or use microwave if you must)
3. Make your coffee in the AeroPress (or whichever tool you use)
4. Dump your hot milk and coffee into a blender with the rest of the ingredients.
5. Blend on high for 5-10 seconds.
6. Pour into mug. A lovely froth will cover the top 1/2 inch or more, depending what kind of milk you used.
7. Sprinkle with a few flakes of hot red pepper (optional)

Turmeric can help with inflammation and pain. I’m not convinced, as I still hurt all over all the time, but maybe if I didn’t have my daily concoction of turmeric coffee I’d be even worse off. At the very least, this coffee mixture makes me feel warm and cozy. It’s my one luxury. I hope you enjoy it as much as I do.

 

 

Fourteen Years on WordPress!

Wow, two (count ’em, TWO!) posts from me on WordPress in one day.

I should probably read and write on WordPress more often. The few WordPress blogs that I do follow are such blessings, and I want to be a blessing to others, too.

Well, I just wanted to say that WordPress has pointed out to me that I have had this blog for fourteen years now. I am still not used to the “new” version of how to create a post, much preferring the old system, and that is one reason I haven’t been posting as much as I used to. There used to be a way to switch to the classic version, but each time I try to find it lately, it is not readily available. I poke around and sometimes I find it, but then so much time goes by till the next time I’m in here that I can’t remember what I did the previous time. And today I cannot find it. And I am having a heck of a time finding the option for inserting a photo into my post, so there may or may not be a screenshot below that shows my 14-year anniversary announcement. 🙂

Anyway… Here’s to fourteen years with WordPress!

Ahh! There it is.

Until next time I write, should the Lord tarry and my hands and eyes cooperate with my brain, I bid you farewell.

The Universe is Not Equivalent to God

The universe is not God.

Where do people get the idea that “the universe” can speak to them or do things for them?

I often hear people refer to the universe as having the ability to help them.

We live in the universe. The universe was created by God. The One who did the creating of it is the one who can help us.

An analogy could be a woman living in a house that her husband built. The woman falls down the basement stairs and breaks her leg. She cries out, “House! Help me! Carry me to the hospital!”

The house just sits there and doesn’t help her because it can’t. It’s just the created thing.

But if the woman cries out to her husband, “My love! Please, come help me! I need you to take me to the hospital!”, the husband hears her and because he loves her and he has the ability to help her, he does.

Now, I’m not saying that God fixes everything we break. God’s ways are not our ways. His thoughts are higher than ours. What we might think is the best thing may not be part of the overall picture He has. This world entered the slippery slope of decay from the moment the first humans chose to do things their own way despite having been warned by God there would be the consequence of formerly-nonexistent death if they went in that direction.

⁸ For my thoughts are not your thoughts, neither are your ways my ways, saith the Lord.

⁹ For as the heavens are higher than the earth, so are my ways higher than your ways, and my thoughts than your thoughts.

(Isaiah 55:8-9)

I trust the ways of God, the One who created a universe that even in the face of certain death continues to offer beauty amidst its fallen state, but I sure don’t trust the universe to do anything of its own accord while it continues to decay toward ultimate destruction. Perfection is not for here and now, but Jesus, the Savior God sent for mankind (if you don’t know the record of what He did, look into the Bible for details), promised a far better place, with Him, for those of us who trust Him.

Is There Anybody Out There?

Those who grew up with certain music might now be hearing that in the tune of the song by Pink Floyd with that name.

In the description of that song (here, on Wikipedia), it refers to it as a distress call.

And that is kind of how I am saying it, too. I am feeling a human need to reach out and connect with others.

It has been many moons since I wrote in this blog. Like anyone else, I have been occupied. I have so much I wish I could write, even just to get it out of my head. I do miss it — doing the writing AND connecting with the small community of fellow WordPress bloggers I have gotten to know from a distance.

“From a distance.” How far away from each other are we, really? Are we in some ways closer with our “pen-pal” friends on the internet than we are with our face-to-face connections? And then I think about how it will be in heaven, with no more barriers hindering perfect fellowship because sin and its effects will be eradicated.

Anyway, that’s my mini-ramble. Next, I am going to see what my 17-month-old granddaughter is trying to say from her playpen behind me. Maybe she would like to move to her high chair and eat something.

Are you reading this? If so, please let me know in a comment, and if you feel like telling me a bit about what’s happening in your life today, I am all the proverbial ears.

PS: Is there still a way to revert to the old style of WordPress? I hate these “blocks” and the rest of it, and every time I did come back in here to write since they changed it, I was able to find the option to revert, by poking around. I’m not finding it today.

Pagan Christianity?

Pagan Christianity, by Frank Viola and George Barna

Anyone read this book? It’s validating of stuff I have been saying for decades but to which most people tune out once I start.

The book title, “Pagan Christianity”, might be off-putting to the average Christian, but what it’s saying is that many of the traditions that are part of modern-day groups that gather in buildings known as “churches” are derived from pagan practices. So much is wrong there, yet people keep feeding into it.

Like with Halloween, so many people keep on doing it, even those who call themselves Christians, though the roots of it are evil.

Do you think tithing is biblical? Why? Because a pastor told you with Scriptures he pulled out of context and used over and over?

Do you think a pastor being the leader of a local church is biblical?

Do you think the office of a “pastor” is biblical? Oh, the word “pastor” is in the Bible, but it is not what these men (and sometimes women) are portraying today.

Do you think it is biblical that one orator should be preaching Sunday after Sunday, year after year, with maybe a “guest speaker” now and then?

Do you think having a dedicated building, with all its expenses, for church meetings is biblical?

Do you think seminary is biblical?

Well, you’d be wrong if you think so on any of that, and furthermore the roots from which all that stems is not what you might be led to presume.

Look into history. Many things that are acceptable today did not start out that way.

Look at the evils around us today to which many of us are opposed. If we don’t succeed in shutting down that which we know is wrong, it will become accepted as the norm and throw individual souls and collective nations into further harm as they ignore the truth.

Get to know Jesus better, through His word. Question everything and study to show yourself correctness. Know Jesus by His Word, the Bible. Know why He came, and know where you are going as a result. He is the Way, the Truth, and the Life. The truth really does set us free.

Dreams Don’t Have To Have Meaning

Go with the spirit…

“Dreams are sometimes simply fascinating stories, and that in itself is worth something in this world.”

Steeny Lou

A friend told me about a dream he had where he was on the 76th floor of a church spire. His nine-year-old son, whom he misses dearly, was up on that 76th floor with his mother and stepdad. My friend kept climbing the stairs, flight after flight, wondering why there was no elevator and why the spire was so high, trying to reach his son. When he got to the 76th floor, his son ignored him, as he had been instructed to do by the mother and stepdad who took it upon themselves to block the real dad out of the boy’s life.

I can easily attach some meanings to that dream based on how it parallels with things I know/assume about my friend and things I know/assume about buildings, stairs, church spires, hate-filled exes, and the number 76. But my thoughts may or may not accurately reflect the reason for my friend’s dream. Giving him my musings on the dream are at best food for thought and fuel for further discussion between two friends as they try to resolve a troubling aspect of one of their lives, and perhaps ideas may apply to something else in my own life, in that story-swapping manner that is characteristic of friendships.

And that is not a bad thing.

It has occurred to me that dreams may simply be fascinating stories that have no conclusion attached, and that in itself is worth something in this world.

If dreams truly are messages from God, as some presume them to be, based on what they know/assume about dreams that were interpreted in the Bible, I would like Scriptural evidence for me to consider.

Then as soon as I wrote that last line, this from God’s Word came to mind: “Little children, love one another.”

And perhaps that is at least part of the point of dreams, to encourage communication with fellow humans about something that piques our own curiosity enough to share it with a friend, so we can help each other in the selfless way love does, even if only to be a hearing ear where needed.