Chronic Fatigue Affects the Entire Household

Living with Someone Who has Chronic Fatigue Syndrome.

It’s interesting, to say the least, to live with a person who suffers from Chronic Fatigue Syndrome. Oh, and by the way, it’s usually accompanied by Fibromyalgia and often other auto-immune system problems.

The syndrome is properly named. The person with Chronic Fatigue is tired all the time. Not just the tired you are after running a marathon or climbing Mt Everest, but the fatigue that is so disabling that getting out of bed is a major undertaking. 

Someone with Chronic Fatigue needs 12 to 18 hours of sleep every day. And just powering through it is not possible. So, to bed by 10p, sleep until noon, take a nap at 3 until 7p and then up for 3 hours maybe.  And that’s on a good day.

I feel so sorry for Donna. She is a doer and has been all of her life. Just think, she started grad school in Social Work in her 40s, did her internship and started a successful private practice when she was almost 50.  She continued practicing even after her symptoms appeared, scheduling her clients for her awake times. 

She did what she did in chronic pain from the fibromyalgia.  It was painful to watch her apply various topical ointments to joints so she could sit or stand without collapsing.  All the while not complaining.

These syndromes were kickstarted after Hurricane Katrina decided to blow our house down. That story one of these days.

Chronic Fatigue and Fibro are cyclical, so Donna is her old self once in awhile. She gets more done in one day then than most people do in a week. I stand in awe of her accomplishments.  

Soon, you will hear directly from her of her daily difficulties, but she is in a down cycle right now, needing as much sleep as she can get.

Donna joins me

We have another disabled person joining me in describing our daily bumps in the road. My spouse, Donna Morse, talks about her invisible handicap and what she goes through. It's cyclical and a right pain in the ass. 

Handicaps come is all shapes, sizes, denominations, designations, and conglomerations.  There are the wheel chair bound, the scooters and the walkers, the ones with Seeing-Eye doggies, and the ones with those funny-looking Captain Hook hands, arms, and legs.  These are The Visible Ones.  Jan is one of those: She's a Scooter. 

Me, I'm one of The Invisible Ones.

I look perfectly healthy.  I walk without aids, have all natural limbs, and play with our two canines that are nothing more than lazy hounds.

  I love to be outside: gardening, swimming, hiking, exploring. Dancing is my body's all-time favorite thing to do.  Having friends around and cooking for them delights me to no end.  But……

There are days, and sometimes weeks, when I sleep more than I am awake; I have no option to do otherwise.  Sometimes every joint feels swollen and achy, my muscles go weak on me, walking is a monumental chore, and dancing, well, isn't an option.  I'm forgetful.  I lose words.  My brain just goes wonky on me.  Life's not at all fun and folks - some who know me pretty darn well - wonder, "What the hell is her problem... last month she hiked a mile with me?"  

Chronic Fatigue and Fibromyalgia:  That's what it is.  But it is invisible like so many other debilitating conditions that are so dismissed and misunderstood.