Mac Harper

Severe ME/CFS Patient, just trying to remain sane.

[Mac Harper @ArtoriusAQ]

@chydorina I would be interested in trying it

[Mac Harper @ArtoriusAQ]

@_ColeMcCormick It is one thing to believe this logically. It's entirely another to believe innately. Endless days of suffering makes it quite difficult to remember on a moment to moment basis

[Brian Fog @useless_priest]

RIP Luigi🕯️

[Whitney Dafoe @DafoeWhitney]

I’m tired of never feeling like I have enough energy. Never able to be myself because of it. Feeling like my soul is spread out over a barren landscape without enough nourishment to survive; To support life.

I’m tired of how this forces constant restraint, constant planning and deliberation over every thought, movement and action. There is no spontaneity in this life. I want to simply act. I want thought to flow into action like water over a tropical paradise.

The way life is supposed to be felt.

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#mecfs #LongCovid #ChronicIllness #pwME #spoonie

[Whitney Dafoe @DafoeWhitney]

We Need Your Help

Imagine starving to death and being allergic to all food.  And everyday trying to decide between starvation and a deathly allergic reaction.  ME/CFS is like an allergy to energy expenditure.  Imagine everyday trying to decide between doing something that makes you feel alive or deathly sickness.  The more you do, the less alive you feel.  And the less you do, the less alive you feel.  And the more you do, the less you are physically capable of doing.  That is ME/CFS.  Everyday.  For decades.  

But if you don’t have ME/CFS, and are not allergic to life itself, you could decide right now to help us.  And it won’t cost you anything but an extra work day, or one less toy or luxury, or some other small sacrifice in an otherwise life full of blessings and opportunity.  Which I would not want to take away for a second.  But a small sacrifice from you would go a long way towards helping people living in absolute hell.  

Go here to donate to ME/CFS research: 
https://t.co/Ru1nyvjQqq

Learn more about ME/CFS here:
https://t.co/Umhh7me9eO

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#mecfs #mecfsawarenessday #mecfsawarenessday2026 #chronicillness #pwME #spoonie

[Gwyn @gw411954]

in honor of James Strazza who died this week from very severe ME i want to share a blogpost by him and his mother Galen, which has accompanied me for the last years and helped me in more ways than i could say.

rest easy James 🤍

[Whitney Dafoe @DafoeWhitney]

Imagining but never doing
Dreaming but never experiencing
Longing but never feeling
Seeing but never touching
Believing but never receiving
Envisioning but never achieving
Driven but never accomplishing

⠀⠀⠀⠀Loving but always being alone.

The experience of living with ME/CFS.

——————
💙 Whitney

— Add your own line to this poem in the comments below 👇 🙏 💙

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#mecfsawarenessday #mecfs #LongCovid #ChronicIllness #Spoonie #pwME #mecfsawarenessday2026

[Mac Harper @ArtoriusAQ]

@Cdyrud1 @paolini I assume he wouldn't have known, just lucky. Presumeably he either was given arrows at some point by Galbatorix, or else stole some before leaving with Tornac.

[Dan Wyke 🦠➡️🧠🔥 @Dan_Wyke]

💭
Don't do anything to trigger PEM
Don't do anything to trigger PEM
Don't do anything to trigger PEM
Don't do anything to trigger PEM
Don't do anything to trigger PEM
Don't do anything to trigger PEM
Don't do anything to trigger PEM

*Does something* 🤦

[Mac Harper @ArtoriusAQ]

It's not like the Patriots have ever been involved in a cheating scandal before right?

[Mac Harper @ArtoriusAQ]

@chydorina Insurance contacted me and will not continue to cover it if I don't do a bunch of hoop jumping. The overall benefit/side effects for me is not worth the extra aggravation of fighting the insurance company.

[Mac Harper @ArtoriusAQ]

@chydorina After about a month, mixed results. Pain was usually, but not always reduced by 1-2 points vs normal the morning after I took the tonmya. (Scale of 1-10). However, orthostatic issues increased about in equal measure. So a clear trade off. 1 of 2

[Mac Harper @ArtoriusAQ]

Humana Medicare Advantage has been a complete disaster in Michigan for me. Would not reccomend, should have switched while I had a chance.

[Ror Preston @RorPreston]

ME/CFS shows the highest impact on family members’ and partners' quality of life among conditions so far studied using the FROM-16 questionnaire

[Whitney Dafoe @DafoeWhitney]

Living just one more day with #MECFS is the saddest, most horrifying thing I could imagine.  But I’m going to do it.  I’m going to wake up tomorrow and let another day slide past me without living it.  And I’m going to get up the next day and do it again.  Acceptance, letting go, courage, crying, cursing, righteous anger, pulling out what’s left of my hair, whatever it takes to get through one more day and closer to that day when we get real treatments and a cure.  It breaks my heart every single day, but I can live with a broken heart.  I need to feel freedom again.

#pwME #ChronicIllness

[Mac Harper @ArtoriusAQ]

Jason Meyers for #SuperBowl MVP

[Mac Harper @ArtoriusAQ]

@winwithmelanin @ThePOTSPostman That sucks. Mine are a couple years old and haven't had any problems, perhaps I just got super lucky. Course, I can only manage to do one load of laundry every few weeks so perhaps that's why they survived haha