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  • Writer's pictureGalen Warden

Caring for James

As I care for my adult son who is 100% bed bound with Severe ME/CFS, I've decided to write about our experience - his experience suffering with this disease, and mine about caring for him. I've shared chapters from my book and more information about ME/CFS on my author site:

There’s nothing wrong with his legs, and yet he can’t walk. There’s nothing wrong with his eyes, however, he lives in 24-hour darkness because he can’t tolerate light. There’s nothing wrong with his ears, but, unprotected, sound tortures him with pain in his brain, and once a loud sound gave him a 45-minute seizure.

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 90% bed bound since 2019, and 100% bed bound since January, 2020.

My message, and the reason I'm writing my book, is that the level of disability and suffering my son is experiencing could have been prevented had doctors known about Myalgic Encephalomyelitis (ME/CFS) and the proper advice to give him: rest. Don't push. Don't do anything that tires you. Go to bed and radically rest so that your body has a chance to gain back what it has lost, before you lose even more.

Instead they told him his unrefreshing sleep was a result of depression and anxiety, and this was making him "tired." If he'd just exercise he'd be sleepy at night, he'd sleep better, and he wouldn't be so tired.

The opposite is true. Exercise, climbing the stairs to his apartment, pushing through his fatigue, caused him to eventually not be able to do anything at all. Not even lift a glass of water.

My goal is to share this message to everyone who knows anyone with ME/CFS or Long Covid. If that's you, if you know anyone wondering if perhaps they have Long Covid, or wonders why are they so exhausted even though all of their bloodwork comes back normal, please visit my page and educate yourself further.

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