Sarah Arnold Nelson Writes

Sarah Arnold Nelson Writes Sarah Arnold Nelson is writing a book on practical steps when battling with chronic illness, pain, and loss for Christians.

I don’t know who created this chart but it has me laughing. I can identify with all of the options!Yesterday, I had to u...
05/30/2026

I don’t know who created this chart but it has me laughing. I can identify with all of the options!

Yesterday, I had to use the computer to deal with paperwork. (The powers that be don’t care if you are disabled. You must document!) As a result, today my migraine has spiked and it feels like someone is trying to poke my eyes into my skull. Although other things escalate my migraine, using the computer is a constant cause-and-effect. I have no idea how I worked as long as I did!

Because Myalgic Encephalomyelitis involves pain and inflammation of the brain and spinal cord, it affects every system in the body. My migraines are one of many issues that “flare.”

Dynamic disability is ironic because the most important thing for the disabled person is stasis. But as we know, there is no such thing in life as stasis!

My brain is scattered so I hope this made sense. Choose joy today, even if computer screens and barometric pressure changes are evil.

05/29/2026

Tired and exhausted. Two different words. They sound like they mean the same thing but they don’t.

Tired means you have run down your reserves. There is satisfaction in being tired. There is contentment in crawling under the covers after a long day of accomplishment. “Today, I DID something.”

Exhaustion means depletion. Being without reserves. It’s like having an old phone that won’t hold a charge. You wake up as depleted as you go to sleep. Sleep no longer charges your battery. You rest without renewal.

Myalgic Encephalomyelitis robs you of so many things. One of those things is being tired. Of working hard, accomplishing much. Of seizing the day.

I miss being tired.

Speaking of grief: Today I have to post Ellie’s beloved turtle Eduardo for sale. Ellie did extensive research on what ki...
05/23/2026

Speaking of grief: Today I have to post Ellie’s beloved turtle Eduardo for sale.

Ellie did extensive research on what kind of pet she wanted. She knew she needed something that wouldn’t need to be walked. Right after we moved here, we found a turtle with all the supplies included. It was perfect. Ellie has enjoyed taking care of Eduardo and his presence has eased a corner of her loneliness.

But since we got him 9 months ago, Ellie’s exhaustion and sensory issues have gotten progressively worse. She can’t take care of him like she did. Now, she can’t handle the sounds of the filters in his tank. We’ve racked our brains for a solution but there is nowhere else in our little house to put a 50 gallon aquarium.

Ellie came to the painful decision that she has to let him go.

Chronic illness steals so much from you! I am in a constant pattern of returning my fears for Ellie to God. I want so much for myself but those dreams pale in comparison for what I hope for my daughter. I commit to trusting God with her future but then something else happens and I find myself snatching back that trust. It is an area of spiritual growth opportunity for me.

I’ve driven down the road with friends, blasting music with the windows down.

I’ve gone to concerts and festivals and parties.

I’ve gone on dates and fallen in love. I married the love of my life and had his babies.

Well over 20 years later, I’m still in love with him.

I’ve watched our babies grow into young adults I’m proud of.

I’ve earned degrees and walked across stages.

I’ve held jobs that were meaningful and fulfilling.

I’ve served my church and my community.

I want all those things for Ellie and more.

Please, God. Heal my daughter. Please let her experience all life has to offer. May her life extend beyond a quiet, dim bedroom without even the companionship of a turtle.

And help me to trust her to You, Lord.

I hate this.

Our youngest daughter, Ellie, is amazing! Despite increasing symptoms of Long Covid and POTS, she persisted and earned a...
05/20/2026

Our youngest daughter, Ellie, is amazing! Despite increasing symptoms of Long Covid and POTS, she persisted and earned an AA-Medical Assisting a month after she turned 18! She deserves to be celebrated.

Neither Ellie or I was up to traveling to Virginia for the graduation so we watched the televised ceremony. Then, we went to Logan’s Roadhouse here in Clarksville to celebrate. We were in a quiet, private room and had a delicious lunch.

I’ve been teetering on a crash all week after going to Nashville for testing a few days before. Usually, I get a day or two after an activity before a crash hits. This time, it was about 5 hours between getting home and crashing.

I couldn’t walk unaided. I could barely speak. It was hard to focus my eyes. Pain exploded throughout my body. Exhaustion like I can’t describe took over as the energy I borrowed to “do a thing” proved again to be a loan I couldn’t repay.

I don’t remember Sunday. Monday, the crash started easing only for Ellie and I to get sick with bad colds. (Not having an immune system is more fun than anyone person should be allowed to have.)

I am constantly juggling mental health and physical health. Doing things always comes with a price tag.

Shout out to Logan’s Roadhouse. They took such good care of us! It was a pain in the butt for them to serve us in a back room away from everyone. Our service was phenomenal. I don’t get out often and so it is SO meaningful when people make it special, especially for my sweet Ellie.

05/16/2026

Every day, I try to focus on gratitude. I spent some time looking around our home outside, marveling that we get to live here among so much peace and beauty.

But today I am also reminded of what ME/CFS and its minions (POTS, MCAS, anemia, etc) have stolen. Today, my youngest graduates with her AA from Liberty University’s dual enrollment program. Because of my ME and her ME, we cannot attend in person. Ellie worked so hard to meet graduation requirements even while being sick. Graduating cm laude was an incredible achievement! The pomp and circumstance that is hers by right have been stolen from her by this illness.

Today is also the wedding of one of my oldest daughter’s dearest friends and the daughter of my dearest friend. I cannot travel. (We say prayers of blessing over their marriage from afar.)

Missing milestones is one of the many griefs of Long Covid expressed as ME/CFS. Life events that so many people (reasonably) take for granted are unavailable to me. They are unavailable to my daughter. That is an even bigger grief.

Gratitude does not negate grief; it just doesn’t let it have the last say.

The hallmark symptom of ME is post-exertional malaise (PEM). It’s sometimes referred to as post-exertional neuroimmune e...
05/12/2026

The hallmark symptom of ME is post-exertional malaise (PEM). It’s sometimes referred to as post-exertional neuroimmune exhaustion (PENE). Rough acronym but it is a more accurate name.

PEM/PENE is a “crash” that occurs 24-48 hours after activity. It’s particularly insidious because you may not realize how badly you overdid it for a couple of days.

So let’s say I went to church on Sunday. This involved (1) travel, (2) social interaction, and (3) heavy sensory input of lights and sounds.

I *may* be okay Monday. (Well, at baseline, anyway.) But then Tuesday, I go to get out of bed and I can’t. I will have to be “frog walked” to the bathroom. I’ll be laying in bed except to eat. The room will be dark and quiet. The exhaustion is terrible. The pain is worse. It involves bone, muscle, and nerve pain in addition to a cranked up migraine.

Sometimes, I will have gotten up on Tuesday but, at some point, my body just powers down.

PEM crashes can last anywhere from a day to months. They are somewhat predictable but not completely. The duration and severity depend upon how much I pushed past what I should have done, how other aspects of my health are, and even what the weather is like.

The other fun aspect of crashes is that every time I crash, I risk lowering my baseline (normal level of function). It takes a lot of pacing and a lot of not crashing to increase my baseline. If you crash too much, some people never regain their function. Some people have gotten so sick, they’ve died.

I lost so much function because, when I first got sick, I told myself I was the exception. I could keep working and, as long as I rested, I would be fine.

My last day at work ended with me passing out in my office, coming to consciousness only to discover my legs wouldn’t work. They didn’t work for four hours. It was one of the scariest days of my life!

While it’s not as bad as it used to be, crashes are still scary. Life stops. The world shrinks from small to minuscule.

When someone you know with ME / Long Covid says we’d love to do something with you but we can’t, know we aren’t lying. We would love to be at church or meet you for lunch or a movie or a concert. Normal life is so appealing!

Unfortunately, we have to think about the inordinate impact that activity will have on our health. It’s not fair. In fact, it’s ridiculously unfair.

It’s also our reality.

My friend Anna Impossible took this picture and gave me permission to use it. I laughed when I saw it! It is such a fant...
05/08/2026

My friend Anna Impossible took this picture and gave me permission to use it. I laughed when I saw it! It is such a fantastic visual of my nervous system.

While debate still rages about the mechanism that causes ME, the inflammation to one’s brain stem and spine is undeniable.

This inflammation affects every system in the body. That’s not hyperbolic. That’s the reality of the condition. For every person with ME, the top medical care questions are

* Which systems are most affected?
and
*How do we best mitigate those symptoms?

At every appointment with my Long Covid specialist, we pick the top two most troublesome symptoms at that moment and focus on those. Two out of 60+.

Every day is challenging. I pray I navigate my days with grace but it does take grace.

If you see me smiling, that’s endorphins and pain meds. You don’t want to see me later when the excitement and medication buffer ebbs away and all those symptoms come flooding back.

I should back up: What is ME? Myalgic Encephalomyelitis - pain and inflammation of the brain and spinal cord. Because th...
05/03/2026

I should back up: What is ME? Myalgic Encephalomyelitis - pain and inflammation of the brain and spinal cord.

Because the brain and spine are the source of everything, ME jacks up every system. (And I mean every system.)

About half of people with Long Covid meet the ‘qualifications’ for ME.

An aside: One of the challenges with the term ‘Long Covid’ is that it means any ongoing health impairment suffered because of Covid. That means Long Covid can be anything from ‘I never got my sense of smell all the way back’ to ‘I am completely debilitated and disabled.’

Quality of life for people with ME ranks lower than those with cancer, MS, or congestive heart failure.

Over 75% of people with ME cannot work. The other 25% manage to work but can’t do anything else.

While people in any life situation can find meaning, ME makes it challenging.

How do people travel this road without Jesus? Beats me.

May is ME/CFS Awareness Month. I will be sharing facts about ME and related conditions all month. (I hope.)“Mild” Myalgi...
05/02/2026

May is ME/CFS Awareness Month. I will be sharing facts about ME and related conditions all month. (I hope.)

“Mild” Myalgic Encephalomyelitis (ME) equals a 50% loss of function.

Sit with that for a moment. 'Mild' means you have lost 50% of function. (Who comes up with these definitions?)

At my sickest, for over three years, I was in the Severe Category with crashes dropping into Extremely Severe. On an average day, I had lost 80-90% of my function.

Four years in, through many prayers and trialing medications, I have moved into the Moderate-Severe category.

While this is fantastic by comparison to where I was a year ago, it in no way equals recovery.

ME can be a waxing and waning condition. Some people have periods of increased function before inexplicably losing those gains.

Only about 5% of people truly recover. The majority of them are under 30 and recover within the first two years.

Over 3 million people in the US have ME; it's 17-24 million worldwide.

If you have questions, please feel free to post them in the comments. I am happy to answer.

I was just reading a conversation between people with Long Covid. The question was asked, *If you were suddenly ridiculo...
03/25/2026

I was just reading a conversation between people with Long Covid. The question was asked, *If you were suddenly ridiculously wealthy, what treatments would you pursue?*

While a few people listed treatments, most
people said things like:

*I’d have someone come in to clean.
*I’d be able to eat healthy meals consistently.
*I’d have someone to coordinate my appointments.
*I’d vacation by the ocean and let my nervous system reset.
*I wouldn’t have to fight social security.

There is currently no single test diagnosis. There is currently no cure, only mitigating treatments. The mitigating treatments are hit or miss. But everyone does better when there is less stress because Long Covid (in most of its forms) is a disorder of the nervous system.

The problem is that being disabled is inherently stressful. You lose your job. Your finances probably implode. Your health baseline is the same as the worst sick day of most people’s lives. Your relationships are strained because you can’t be reliable and you always need help. The medical appointment coordination and insurance management you have to do would strain a healthy person.

All this and your doctor adds, “And avoid stress.”

If you see me, pray for me. Heck, if you think of me, pray for me.

If you think of a practical way you might help someone you know who is disabled, offer that to them. (Vague offers of “Let me know how I can help” are kind but really hard to take you up on. It takes mental energy they may not have.) See a need, meet a need. In doing so, you will honor Jesus’ admonition to “do unto the least of these as you would do unto me.”

Are some disabled people bitter curmudgeons? Sure. Just like in every other group of people, we have our share of ‘challenges.’ But most disabled people are doing the best they can with what they can. Please be patient and realize we are forced to undertake more than our brain foggy noggins and our misfiring nervous systems can handle.

On another note, now that the worst of winter is over and my migraines should calm down a little, I hope to write more consistently.

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