S.15/E.20

Galen & James, credits: Richard Burkhart (photographer)

Caregiving for Severe ME/CFS

This week we will discuss severe ME/CFS. Our guest is Galen, the mom to six adult children, one being her son James. Galen is now a full time caregiver to James due to the severity of his disease.

(From Galen's Blog)

"James was a healthy young man until he very slowly, because of medical ignorance and poor advice, became weaker and sicker following a severe case of the Epstein Barr Virus when he was just 19. After a few years, he slowly lost his ability to drive, to stand in his kitchen and prepare food for himself, then to walk more than a few steps, to use an electric wheelchair, and finally, to even sit up if carried onto a commode. He’s been 100% bed bound for three years. What is this bizarre disease that so many medical doctors prefer to pass off as psychological, psychosomatic or self-inflicted?

Myalgic Encephalomyelitis was, in the past, known only as Chronic Fatigue Syndrome. An unfortunate name because it’s so easily dismissed as simple chronic fatigue, familiar to many with autoimmune diseases. ME/CFS is entirely different. It’s a disease not known, not taught, but not rare. Just rarely acknowledged, and more rarely understood....

ME appears to be a post-viral disease. The onset can be caused by Epstein Barr, Dengue Fever, Covid 19, and other viral illnesses. Now, research is so urgent because Long Covid is impacting thousands who are unaware of the potential that they could end up like James.

Post-viral Covid could easily continue to progress to Severe ME/CFS if patients are not aware of how to manage their overwhelming weakness and fatigue. They must rest and never push themselves. They need the early support of their families to pick up the burden of making meals, driving them, helping them rest as much as possible. Because, if they don’t allow them to rest now, caring for them will become a very heavy burden.

These patients, with their desperate families, their disbelieving caregivers and puzzled doctors, are why I’m compelled to add documenting our experience to my long list of weighty obligations."

Since losing much of his strength due to this disease, James has turned to poetry as a way of keeping his place in this world. He has consented to our posting a sample on this page. If you would like to learn more about his artistic works I have included links below.

#30 My Pain Meds

by James Strazza

My pain meds aren't

making me queasy today,

maybe I should have taken a full dose.

I was scared of the side effects,

so I took half at most.

Maybe it was the ginger,

maybe it was the turmeric,

maybe it was the toast,

that stopped me from feeling sick.

Finally a win,