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.

For The Overwhelmed

To the overwhelmed:

I understand.

There’s so much we all must bear, and sometimes it is more than seems reasonable. I’ve been there all too often and will likely return.

As for me, my comfort is in knowing that this world is not my home, I’m just a-passing through.

Yes, I’m talking about being headed for heaven through the One who saved me.

I hope you know what I mean – salvation through faith in Christ alone, that He was, and is, and is to come again. If you don’t know, fire me a note and I’ll do my best to answer your questions.

May you know this Peace that is beyond understanding.

Maranatha!

Peace, Love, and John Deere

It was the perfect June morning, still spring but on the cusp of summer, the air warm but not yet sweltering. Most mosquitoes used what little sense they had to remain asleep or unborn at that hour, except for the real go-getters eager to fill their beaks. The sun’s rays were fingers that elicited a symphony of scent: wild roses whispered in sweetly perfumed voices of full bloom all down the country lane, wafting out from beneath pine and spruce trees that sang their own songs of toasted aroma. A variety of birds blended in some audible notes of cheer.

And then a woman appeared in faded denim cut-off jeans and a loose pale lilac T-shirt, chugging along on a John Deere lawn tractor. She wasn’t mowing anything. She couldn’t if she wanted to, for the mower assembly was broken. Nothing but rocky asphalt was beneath the tires.

Chugga-lugga-luggin’ at a top speed of five miles per hour, she traversed six acres down the road, vaguely hoping the cop who lived nearby in the other direction wasn’t on duty. His kids are friends with some of her kids, so maybe he’d look the other way and say nothing if he saw her.

But maybe driving a lawn tractor on a public street isn’t a crime in that small community.

She parked the tractor on the grass by the driveway of her neighbour, shut it off, and walked into his garage.

“Helloooo!” she called out.

“Oh, good, you brought it,” said the neighbourhood mechanic.

“Yep, rode it over!” she said.

“Ya didn’t!” said his buddy from the other side of the garage, walking over to look into the yard.

“Oh, you DID!” he added, laughing.

Well, really, she saw no point in hooking up the utility trailer, setting up a ramp to it, and driving the tractor on, when she could save thirty minutes and drive over in five.

“Only at the 108 can we do that, eh!” she said, giggling.

“Annnd I just realized I forgot the cable that fell out of it,” she said.

“I’ll run home and get it,” she called out as she headed swiftly back down the driveway.

Around one corner and then another, she ran into a couple of neighbour guys sitting in lawn chairs. One chuckled, “What’d ya do, drive the tractor down the road and break it, so now you gotta walk home?”

She laughed, “No, the mower assembly has a broken cable, so I brought it down to Barry to fix. But I forgot the cable, so I gotta go grab it.”

I guess not a lot of people drive their lawn tractors on our roads, as when she returned a few minutes later with the cable in her hands, another neighbour called out from her front steps with a laugh in her voice, “Did you just ride by on your tractor?”

She laughed and said, “Yes, I did. I felt like the guy in that Adam Sandler movie, Waterboy, who rides his lawn tractor to town.”

Amidst more exchanged words and a few giggles, she showed the cable she’d just fetched, bid her neighbour a good day, and carried on.

After dropping off the cable, she ran home, did a few chores in the house, and an hour and forty dollars later, her tractor was ready. She ran down to retrieve it and buzzed on back home, dropping the mower into action when she reached her own acre of grass.

As she mowed, she wrote books in her mind. Some of the chapters might end up in print. Some might just be descriptive narratives like this here – mindless stories that are easier to recount than events that happened twenty and more years ago.

Oh, and no cops saw her, by the way. In fact, no vehicles drove by at all. Aside from a few fumes from the tractor, nothing polluted the fresh blue air that day, and for a rare twenty-four hours, all was well in her world.

An Un-churchianity Christian

For years, I couldn’t find a church where I was comfortable. I had been to many organized fellowships, but the more I read the Bible on my own, the more I didn’t feel right about the way things were.

I’m now to the point that I am simply not comfortable in organized churches of the land – and I am comfortable with that.

WE, the believers in Christ, are the church.

There is a lot out there in “churchianity” that is more like a business than the way the Bible shows us about the New Testament believers (the body of Christ) and how fellowship looks.

I know my beliefs concerning this are unpopular. I get frowned upon by a lot of people who are happy to be involved in Sunday meetings with a specific format, to sit under the teaching of a “leader” who we assume will always know more than we can ever learn on our own by studying the Scriptures like a Berean, to help pay the mortgage and/or the bills of their meeting space, etc. But there are some of us who don’t see that as Biblically correct.

That’s the condensed version to reach out in case others share my feelings. If you can relate, I’d love to hear from you. 🙂

Fed up with Facebook?

Here’s a link for a brand new blog for people like me who are fed up with Facebook. I can vouch for its author – that’s all I will say. It is, for now, an anonymously created site while the bugs get worked out.

I hope you’ll visit and help it grow.

https://facebooksurvivors.home.blog/

Misophonia and fun sounds

Seeing how nobody is likely to read this, I feel free to say that I really enjoy listening to the likes of Sh*ttyflute and Rec0rder Mast3r from Youtube. I find those sounds to be fun and even hilarious. It is not uncommon for me to listen to them in my car when I’m driving alone, but it’s more fun with family members. Some of my kids join me in finding them funny. Some find them annoying and do all they can to make me stop.

I’m talking about covers of known songs that are done so crappily on recorders or “flutes”, they’re GOOD. At least, to my ears.

Yet I can’t handle the sounds of certain computer fans, the Nintendo Wii when it gets left on, the BluRay DVD player being left on, the high pitch of an old TV even after it’s shut off (I have had to unplug them to make the noise stop), and various other noises.

It’s called misophonia and I don’t know what to do about it.

I hear everything that I don’t want to hear. One way to block it out is with loud music, and that’s not always practical. Earplugs help, but then I can’t hear the things I need to hear. Walking alone in a forest is a great escape, but I can’t do that all day.

As I type this blog entry, a couple of my kids are in the living room with some “crappy flute” songs coming out of the TV. It is actually relaxing to me. Why is that? I don’t know.

Here’s a very short favorite: just the startup sound of Windows XP. What a random thing to cover. That cracks me up!

I don’t want to see hatred

Almost every time I glance at social media, there’s one person or another expressing their disgust for a politician.

I understand political leaders don’t do everything they say they will. They don’t do everything we’d like them to do. They have pasts we might not like. They have presents we might not like. They project futures we might not like.

But can we control anyone by expressing hatred in the form of sarcasm, mockery, name-calling, or complaining?

Politician, stranger, neighbour, countryman, sibling, spouse – we need not belittle any, for we are all our own little messes. I am guilty myself and want to see me do better.

I think we can only control our own selves.

We can treat even our enemies with respect, whether we feel respect for them or not.

I wish more people would consider their own imperfections and work on improving those rather than filling the air with more ugliness of word.

PTB!

When you are in a grocery store and you see something on the shelf that doesn’t fit in with the other items around it, if you are with someone, point at the item, and with amusement say “PTB!”

They might not know what you mean, so you will need to explain the following, about which I originally mused aloud to one of my children many years ago:

I can just imagine a kid carrying that box of chocolates around as their mom shops.

The kid asks, “Mom, can I get this?”

In an irritated voice, the mom says, “No! Put that back!”

The child says, “But I don’t know where it goes.”

The mom says in an even more irritated voice, “Just put it right there,” pointing at a blank spot between the dish soap and the Windex.

The child with sufficient common sense might realize that is not the correct spot and balk at the command.

The mom, in the most irritated voice she has left, says, “Ugh!” as she grabs the chocolates and tosses them on the shelf.

Since then, I’ve told variants of that story to all seven of my children, and even to a few friends outside the family, whenever we see something that is out of place on a grocery shelf.

“Put that back!” in a mock irritated voice is often shortened to a mere “PTB” in a smiling voice.

A PTB comes in all shapes and sizes. It could be a can of Pringles in the toilet paper section. It might be a bag of chewy banana candies sitting by the bleach. It’s possibly a jar of Bick’s pickles beside the motor oil. It could even be a can of Campbell’s Tomato Soup in with the scented jar candles (though I don’t know if anyone would realistically want to carry a can of that soup around for any length of time, so it could be assumed it was a small child too young to realize what it was).

I draw the line, however, at seeing cold items in a warm section. If time and energy permit, I will usher a carton of cashew milk to its proper refrigerator, and if a container of Ben & Jerry’s Coffee Toffee Crunch should appear in an inappropriate location and isn’t melted, I would more than likely have to add it to my cart for purchase. Waste not, want not.

Next time you are in a store and you see something out of place, think of my little story. If you can, please take a picture and send it to me.

Below is a photo of a PTB I saw yesterday at a local grocery store. 🙂

Happy shopping!

See the PTB? It’s a stuffed animal among toilet cleaning supplies.

Encouragement for Writing

The following is a comment written to me by my friend Chad in response to one of my blog posts (this one: Giving Up On Writing) . I found it so encouraging that I decided to put it in a document, highlighting a few points in Amazinga font, with the rest in Adobe Garamond Pro font, and to print it out and put it on my desk, so I can refer to it until it becomes ingrained. I also wanted to share it with others who might happen to find my blog. May it bless you as it has me.

“I felt like encouraging you to write at your leisure, and don’t let anybody dictate rules about that – not even you.

I’d suggest sitting down to write as often as you get the time, but notice that all I said was sit down to write – I didn’t say actually write necessarily, nor create an obligation to write and then feel lousy if nothing happens.

I’ve received that same advice (with more detail) and it’s the closest thing I’ve done to being something enjoyable and productive. Notice again, that I didn’t say it was enjoyable and productive – just the closest thing to it that I’ve tried.

It’s enjoyable more often than not, though.

It’s also enjoyable more often than it’s productive, and that’s an important piece to ponder, should you desire to do so.

One hint I can give you is that when I sit down at my desk, I’m not creating a law to follow; about accomplishment of any kind. I’ve learned that that never is a positive experience and rarely if ever produces anything, positive or not.

But what I do, instead, is first, enjoy a tiny little pocket of order – or quiet, as it’s commonly known. It usually takes a while for my brain to reach a state that I can call quiet. But when it does I just give myself license to enjoy it.

With God.

Praying and writing are not things I separate very often.

Then I just decide that I’ll write or I won’t.

I ask God, but I don’t strain.

I just enjoy a moment with Him, and I let it go where it goes, and if I happen upon some part of that time that maybe could be written down, then I start.

Without expectations.

That’s the important part.

Peace is vital to the process, therefore laws and expectations are antithetical to it.

Since you do have a specific project in mind, maybe you can still just write whatever comes to you, and stay loose, and maybe you wander into your project, or maybe what you write spontaneously turns out to form an unexpected element of the main project? Or maybe it jars a memory loose that’s relevant to it, or maybe it inspires something unexpected… who knows? Not us, so why form expectations? It ruins the enjoyment, and it stifles creativity. It may never have anything to do with the book you’ve planned, but it may stand on its own as something you and others value for decades to come, and yet more, it may form the basis of a main project that you hadn’t previously even considered. But there’s only one way to find out what it’s going to be….

Prayer for me is a great way to enter the writing process, and writing is a great way to enjoy God. So I combine them, and I trust Him to lead the proceedings. And when I approach it that way, it’s much more peaceful and much more enjoyable, and more often fruitful – and in more than just one way. And if something is not enjoyable, and there’s no gun to your head, it’s not worth doing – in large part because the fruit (product) won’t be as good as it will be if it were an immersive, transporting experience for you, to create it.

Well, that’s my opinion, anyway.

Maybe you’re already doing this but lack the time to engage in such pronounced dissociation, or maybe you’re a different enough personality type that it’s not your thing (although I highly doubt that, from knowing you to whatever extent I do!).

Maybe, however, there’s some use you can make of something or other I’ve said – that’s what I hope, anyway – but either way, I pray you find time, inspiration, and most of all, enjoyment, in the desire and effort to produce, and in the process itself.

Can’t go wrong if ya pray for someone, no matter the quality of your advice! ☺

PS I apologize for the disjointedness and rambling, but I didn’t prepare and I didn’t edit. I rarely do in contexts like this – though folks may occasionally wish I had done! ?”

Biggest takeaway for me is this:
“Peace is vital to the process“.

Amen, so much amen, and aaaaaaaaamen! Yo!