I Miss…

by | May 16, 2023 | Patient Voice

I Miss…


“I’ll pick you up in 5.”

“I’ll be outside.”

… I miss spontaneity.


Work was my oxygen.

Managing, Teamwork, Sharing, Training … Gone

Manager, Vice President, President … Invisible.

Committees, Meetings, Flights … Absent.

…  I miss work. I miss people. I miss contributing.


Athletics, Sports, Gym Rat, Perpetual Tan

Up the stairs two at a time.

Down the stairs two at a time.

No Gym. No stairs.

Bed to recliner to bed. Repeat.

…I miss my body.


Why didn’t she join us?


Sick with what?

Not sure.

She looked fine.

How to explain?

… I miss friends.


I’m so sore.

It hurts everywhere.

Feels like I’m in a vice.

Please don’t touch me.

Fibro.. what?!

… I miss hugs.


I can’t breathe.

I can’t think – it’s all jumbled … again

Did I type that?

Was that today?  Yesterday?

… I miss my (fogless) brain


My body’s battery now only holds one bar of energy.

Get out of bed.  Get in the shower.

Get back in bed.  Recharge

Get out – dry off, brush teeth, brush hair.

Get back in bed.  Recharge.

Get up – dry hair, maybe some blush.

Get back in bed.  Recharge.

Get up and get dressed.

Go to the doctor …  and wait.

Can’t sit.  Wish they had recliners.

See the Dr.  “Labs looks good. Try supplement # 137”.

Back in bed – I’ve crashed.  Sleep for 2, 3, 4 … days.


Can’t work –I worry.

Can’t see friends – I worry.

House is a mess – I worry.

Can’t eat right – I worry.

Everyone getting so far away – I worry.

Everything is getting so far away.

I’m so sorry I can’t.

I’m so sorry I didn’t.

I‘m so sorry I won’t be able to.

I’m so sorry I forgot.

I’m sorry.


MyalgicEncephalomyelitis (ME), Chronic Fatigue (CFS), Fibromyalgia (FMS)

Why can’t there be a name that people could say, and maybe understand?

I am not a syndrome.


Today, I sat outside.

A lizard scampers  – I smile.

A butterfly lights – I smile.

I hear an airplane.   I’m here!  I’m here!

… I miss me.


Joni – Florida

This poem was submitted as part of the Reflections of ME/CFS and FM and Long COVID Awareness Day Virtual Event on May 9th, 2023.

#MillionsMissing #MillionsMore #Hope4MECFS #Hope4FM #Hope4LongCOVID

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