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Chronic Fatigue Syndrome: What Do We Do With The Remains?

By Jody Smith HERWriter
 
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The path of recovery from a voracious illness like Chronic Fatigue Syndrome is uneven and sometimes hard to find. The more years you've been sick with CFS the more bewildering the recovery map -- or lack of one -- can be.

I forgot who I used to be in many ways. I had been this leaden CFS lump in a housecoat with bad hair for so long, memories of my former life seemed like stories about someone else.

I could hardly remember having energy with things to do, places to go. As I eventually began to rise up from under CFS, I had no clue as to how to get back to even a slim semblance of that again.

Not too long ago, I decided to get rid of some neglected piles in my house. I'm not talking about newspapers on the floor, or the basket overflowing with clean laundry. Not a mound of junk mail needing to be sorted and tossed before it takes over the table.

This stuff has been sitting abandoned for years.

I have a drawer full of paperwork that has not been touched in a decade. It holds bank statements and receipts for things paid for ten years ago.

Floppy discs. (Yes. Really.) Old music cassettes. Half-used coloring books.

This in a family where the kids' ages range from 21 to 29.

I have a closet that has five pairs of roller blades my kids haven't touched or thought of in a decade. Old decorations, forgotten jackets and scarves.

I think of this stuff as The Remains. I don't use this term lightly. It refers to what is left after life has departed.

The Remains have been squatting about my house since the day I dropped the ball, and could no longer think or function because the life was being squeezed out of me by Chronic Fatigue Syndrome.

Occasionally I've cast a furtive glimpse in their direction, thinking, I need to tackle those one day. But each time I knew that it would have to be some other day.

It wasn't their contents that made The Remains so overwhelming. They're rather like snapshots, in a way, stills of what was going on in my life up till the time my life stopped. It's just that from that time to this, I didn't have the brain power or ability required.

Add a Comment7 Comments

Jody Smith HERWriter

Hi Anonymous

I understand what you're saying about the impossible fatigue, I had it for many years. And it wasn't depression in my case either.

My doctor and the specialists I saw also had no suggestions. For me, seeing a naturopath was the key.

 

Dr. Kelly Upcott treated me for such things as food sensitivities, detoxification for my  liver, natural antivirals to aid my immune system and other body systems, adrenal support, vitamin supplementation like B12 and vitamin D3, and monthly acupuncture treatments.

Over the past 4 yrs I have gone from being non-functioning mentally and physically to being able to work online fulltime. Still need rest periods, still have time with brain fog and other cfs symptoms but the difference in 4 yrs in dramatic and life changing.

Don't give up. Answers for you may yet be found.

December 18, 2011 - 4:06pm
EmpowHER Guest
Anonymous

but how do you get back on an 'even keel'??? I have had CFS for 3 1/2 years, have been tested by every specialist top and bottom, inside and out and they can't find anything. My tiredness is just too much - and that sounds like I am feeling depressed, but actually that is not the case. Just wish that I could have some energy, some of the stamina that used to be there, and not be sleeping all the time, waking up and not wanting to get up.

December 18, 2011 - 3:34pm
Jody Smith HERWriter

Hi Jacquie

They're huge battles. And the reasons those piles continue to sit, are just as solid as the piles themselves.

Sometimes they can be dented, taking literally a minute or two at a time, and then a long rest period after. But sometimes that is just too much, and makes the brain ache and stirs up the vertigo, the numbness and tingling ... the cognitive slam-against-the-wall that can go on for days ... Better to leave them when things are that fragile within.

I think it's got something to do with an out of whack autonomic nervous system that plunges too easily into the sympathetic nervous system (fight or flight) when things are at all unfamiliar or out of the routine pattern of the day. Even stuff we like and want to do.

I am proof that it is not impossible for that trigger-finger on the SNS to be re-set. Mine will still go off, but not as quickly, not as intensely, and the recovery is not as hard as it used to be.

Hope to be able to one day go through your piles, like a scrapbook, a look back at your life from before. They will keep for now.

Jody

October 17, 2011 - 6:54am
Jac_15 (reply to Jody Smith)

Eloquently put, as always! :-)

Jacquie

October 18, 2011 - 6:36am
Jac_15

And AGAIN! You've hit the nail on the head Jody! I've had to learn to ignore those piles of "what used to be", because even trying to think about where to start is too exhausting. It's sad that there's SO many of us that'll be nodding our heads and looking across the room we're in at a pile that has sat for far too long. BUT! In another way, it's so reassuring to know we're not alone in these battles. And oh my are they battles.

Jacquie

October 17, 2011 - 4:07am
Jody Smith HERWriter

Hi

I know what you mean. And these victories come in all sizes. The small ones are just as monumental as the big ones.

Thanks for writing.

October 12, 2011 - 7:08am
EmpowHER Guest
Anonymous

Your article describes my home and accumulated debris too. Thanks for summing it up so nicely. Everything I am able to remove from my home is a victory!

October 12, 2011 - 5:17am
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We value and respect our HERWriters' experiences, but everyone is different. Many of our writers are speaking from personal experience, and what's worked for them may not work for you. Their articles are not a substitute for medical advice, although we hope you can gain knowledge from their insight.

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