Surviving severe me/cfs

02/14/2026

The five stages of grief are for able-bodied people.

I went through all five.
I accepted my illness.
But grief remains.

It’s no longer overpowering, but it’s always there — in the background, all the time. It never leaves.
Every day is a testament to everything I’ve lost.

The social contract is broken.
I am no longer part of life.

The last time I was outside was in September.
The last time I had a visitor was two months ago.

The loneliness of a broken body is existential.
It isn’t something that can be fixed.
I live in a body in constant agony: excruciating fatigue, pain, brain fog.
Everything is too much.
Walking to the bathroom is too much.
Talking is too much.

And the narrow field of what I can still do keeps shrinking.
Every year, I lose more.

Humans are not supposed to live like this.
Yet I am still alive.

And I am grieving.
All the time.

01/02/2026

Today I woke up from pain.

To be honest, most days I wake up from pain — and sometimes that means 3 a.m.

I take two different pain medications, and sometimes it’s enough to be okay during the day. There is a level of pain I am so used to that I don’t even notice it anymore unless I stop and pay attention. But nights behave differently. They throw everything at you.

I take pain medication at night even when I am not in pain, because I know it will come. The only question is how strong — and how many hours of sleep it will allow me.

I know why I am in so much pain today.

Yesterday I did two things.
I went through my yarn stash to see what I have for my next project, but I couldn’t finish — it was too much for my body. Later, I went downstairs on the chairlift to check if one of my cats had run outside. My caregiver had left early, and it was freezing, so I had to go.

Today my body is paying for it.

I often think about the Buddhist saying: pain is inevitable, suffering is optional. Sometimes it grounds me. Other times my mind refuses to accept it, and I simply give in to suffering.

I don’t know yet which kind of day this will be. The day is still young.

12/31/2025

Here goes another year.

Living with severe illness means that years don’t feel like chapters — they feel like long, uneven stretches of endurance.
This one was the hardest yet.

I spent many months in crashes, unable to do anything — even to think.
My world grew even smaller.
My body grew even heavier.
My nervous system grew even more fragile.

This year I also lost my darling cat Pushkin — my little caregiver, who carried so much comfort and history in him — and later, unexpectedly, another little kitty found its way into my home.
Grief and gentleness lived side by side.
Loss and new love, too.

There were moments when hope was completely gone.
Continuing to survive felt harder than giving up.
And yet — I am still here.

There is new research, new possibilities, and the fragile idea that maybe, just maybe, improvement is still possible.

The world around me is getting louder, harsher, and more cruel by the day.
My nervous system doesn’t handle that very well.
And the inability to participate — to act, to help, to be useful — hurts in a way that I can’t explain.

I don’t dream of a perfect life.
I dream of a little more strength.
A little more stability.
Enough to participate in life again — whatever life is there to have.

I don’t know what the next year will bring.
But I’m still staying stubbornly hopeful.
And just for today, that is enough.

12/29/2025

I finally got approved for new medication from a compounded pharmacy.

I was hoping this medication would come from my doctor, but that didn’t happen.
My doctor has been radio silent since I confronted her about inadequate medical care.

As of now, it looks like I will need to find another doctor — but I don’t need to think about that today.

I feel excited and scared at the same time.

What if it fails?
What if it works?
What if it gets worse before it gets better?
Is this my last hope?

As of right now, this is the only accessible drug that may help me.

Not as symptom control — as a state change.

BUT WHAT IF IT FAILS ?

What then?

I’ve been daydreaming about a life that is a little more alive than what I have now.
Feeling the elements on my face — sun, snow, wind, sleet.
I don’t even care what it is, I just want to feel it.
Sleeping in the woods — not even in a tent. A cabin would be more than enough.
Fresh air.
Going into a store.
Seeing where my daughter lives for the first time.

It’s amazing how priorities shift.
What if I can work again?
Wouldn’t that be amazing?

Gosh, I’m getting ahead of myself.

WHAT IF IT FAILS?

12/27/2025

There is something about long-term illness that most people don’t understand.

People know how to respond to a crisis.
They know how to show up when someone gets sick — as long as that sickness has an ending.
You get better or you die.

But when you become severely ill and you don’t get better… and you don’t die… people don’t know what to do with you anymore.

After seven years of being this sick, I have three friends left.

I had many friends before.
People who told me they loved me.
People who told me how much I meant to them.
People who called me their best friend.

They’re gone now — except for those three.
I still believe that you need to be a good friend in order to have good friends.
And I have good friends: three of them.

And they offer the hardest part of being a friend: staying and meeting me where I am.

Sitting with me when I can’t talk.
Talking to me when I make no sense.
Quietly accepting the fact that I may give up one day — but rooting for me not to.

I have three friends.
I have a husband (for better or for worse).
I have a grown daughter.

That is so much more than many people in my situation have.

Some people have no one.

12/23/2025

Why can’t we work?

🔷💠 "Why aren't you able to work?" - a common question often asked💠🔷

Describing the impossibility of employment while living with Myalgic Encephalomyelitis (ME) is like trying to explain the weight of gravity to someone floating in space. ME is a complex neurological, fluctuating and disabling disease that strips patients of the basic building blocks of daily function—let alone the capacity for work.

We are not lazy. We are not unmotivated. We are not “wasting potential.” Most of us were hardworking, driven and passionate about our careers—until ME took our ability to participate in life as we knew it.

🔷 The Disability Reality 🔷
Only about 25% of ME patients are able to work—and many of those can only manage limited, flexible work. At the other end, 25% of people with ME are housebound or completely bedridden. Even those with “mild” ME—often invisible to others—have lost at least 50% of their pre-illness functionality.

These numbers don’t represent a lack of trying. They reflect the physical, neurological and immunological collapse that defines ME.

🔷 Post-Exertional Malaise (PEM): The Wall We Can’t Push Through 🔷
PEM is the hallmark symptom of ME. It’s a delayed and disproportionate worsening of symptoms following even minimal physical, mental or emotional exertion. The crash usually comes 12 to 72 hours later and can last for days, weeks, months or longer. For many, the decline can be permanent.

A 2019 international survey by Holtzman et al. (n=1,534) found that 67% of people with ME reported never recovering from a crash caused by PEM.

This is not just tiredness. It’s post-exertional physiological injury. In ME, pushing through doesn't make you stronger—it risks permanent harm. Even minimal overexertion can trigger a level of collapse some never recover from. It’s why exercise is not just unhelpful but dangerous for us.

🔷 Fluctuating Illness 🔷
ME is a disease of instability. You might see us online one day or hear our voice in a short conversation—but not see the collapse that follows. ME doesn’t run on a schedule. Our capacity to function can change dramatically from hour to hour and day to day.

This fluctuation makes it impossible to meet deadlines, maintain fixed schedules or commit to the consistency required for employment.

🔷 Cognitive Dysfunction 🔷
“Brain fog” sounds gentle—ME cognitive dysfunction is not. It’s memory failure, language loss, confusion, sensory overload and an inability to process basic information. Reading, speaking, typing and even thinking become physically exhausting. This is not surprising, as your brain uses 20% of your body's energy.

Workplaces depend on sustained attention, memory and executive function. These are precisely the areas ME can impair most.

🔷 Energy Production Failure 🔷
ME is not a condition of low motivation or simple fatigue—it’s a dysfunction in cellular energy metabolism. Our bodies cannot produce or sustain energy normally, and rest doesn’t replenish it. No sleep, vacation or energy drink will undo what this illness does at the cellular level.

🔷 Physical Limits 🔷
Even basic physical tasks like sitting upright, getting dressed or speaking can exceed our energy envelope. Some of us need to lie down most of the day. Others collapse after simple movements. The physical exertion of daily life alone is already overwhelming—working on top of that is physiologically impossible for many.

🔷 Light Sensitivity 🔷
Many of us can’t tolerate typical workplace lighting. Fluorescent bulbs, sunlight and screen glare can cause migraines, vertigo, visual disturbance or neurological crashes. Some live in darkened rooms permanently.

🔷 Noise Sensitivity 🔷
Normal sound levels can be unbearable. Our nervous systems can’t filter noise like healthy ones can. A ringing phone, conversation or keyboard clatter can feel like an assault—leading to overstimulation, pain, confusion or even seizures.

🔷 Chemical Sensitivities 🔷
Many ME patients have Multiple Chemical Sensitivities (MCS) or Mast Cell Activation Syndrome (MCAS). Scents, cleaning chemicals, laundry products and colognes—everyday in most workspaces—can cause immune reactions, neurological symptoms or even anaphylaxis.

🔷 Immunocompromised Status 🔷
A mild virus for a coworker can be a months-long crash or permanent relapse for some of us. Many people with ME do not have robust immune systems. Shared office spaces, public transport and even remote jobs that require appointments or outings pose a major health risk for some of us.

🔷 Accessibility 🔷
Even without wheelchairs, ME patients may need full recline, silence, minimal light, temperature control and no chemical exposure to function. These aren't preferences—they're survival requirements. Most workplaces aren’t designed to meet these needs.

🔷 The Emotional and Social Weight 🔷
We live with an invisible illness in a world that demands visible proof. If we appear “well” for a moment, it’s assumed we’re fine. If we look ill, it’s assumed we’re not trying hard enough.

We’re judged for not working and also judged for trying to do anything at all. The emotional toll of constantly justifying your illness to society, friends and the system is devastating.

🔷 We Are Not “Just Tired” 🔷
ME is not burnout. It is not depression. It is not laziness. It is a multi-system neurological disease that profoundly disables us.

Some of us write, create or advocate when able—not because we’re well enough to work, but because these brief, careful expressions are a lifeline. They do not reflect our baseline or our capacity to sustain employment.

Sometimes, survival means stepping away from everything you love just to make it to the next day.

🔷 To Employers, Friends and Society 🔷
If someone with ME says they can’t work, believe them. We are not giving up. We are protecting what little function we have left. Even when we look okay, what you don’t see is the days or weeks of suffering that follow minimal exertion.

💠 We’re not lazy
💠 We’re not “burned out”
💠 We’re physiologically ill
💠 We’re doing our best to survive

💙👉If you'd like to see more posts like this, give Chronically Rising a follow.

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12/21/2025

I wrote in September that I had four days of summer. That was three months ago, and I’ve been in a crash ever since.

Sometimes the suffering is so relentless that my state feels incompatible with life. I don’t really live — I endure. I’m not ready to give up, but I won’t lie: the idea of not being here can feel like relief.

Since I’ve been doing so poorly, I’ve been looking again at a medication that’s been on my radar for at least a year. Back then, there was so little information available that I put it on the back burner. Now, a year later, the research looks much more promising, and a lot more anecdotal evidence has emerged. I really want to try it.

My doctor is being difficult at the moment. If she continues to refuse the prescription, I’ll need to find a different doctor.

Either way, I’m determined to try, because right now I need any hope I can find. Living has truly become a nightmare, and I need a way out of it — toward improvement, toward something better than this.

I’ll leave a link to the research in the comments.

Wish me luck.

10/06/2025

Little foxy top got finished—too late for the season, but that’s how I roll (sloooowly). Looks pretty cute with the summery necklace I made a while back. 🦊☀️🧶

🙋

09/23/2025

I had four days of summer.
After a brutal six months, I tweaked my meds just enough to feel a little better (not sustainable, unfortunately). With that small window of strength, we made it to our favorite summer place.

Those four days were incredible. But like someone just released from prison—except my prison is my body—I did too much, too fast. I crashed hard.

It’s taken three weeks to crawl back. My meds are back to where they were, and there’s no way I could repeat the experience now.

But it was worth it.
The wind on my face. The water at my feet. The animals coming up to me for treats. For a few days, I was free.

And I’ll hold on to that memory for as long as I can.

09/07/2025

We know this to be true. But how hard it is to explain it to anyone? Even to family, friends, let alone doctors!

08/06/2025

It’s been about 6 months since I made anything. I’ve been incredibly ill, just one issue after another.
This bag I made last summer, but I never got to use it.
This summer is passing by fast, and I haven’t spent any time outside yet. Feels like the walls are closing in on me.
I put the bag on the mannequin, and I’m looking at it from my bed. Somehow, it makes me feel better.