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Chronic Fatigue Syndrome: The Thief Steals Another Friend

By HERWriter
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chronic fatigue syndrome causes loss of another friend iStockphoto/Thinkstock

My friend just died. Lynda suffered from a number of autoimmune conditions, not the least of which was Chronic Fatigue Syndrome.

CFS descended upon her two decades ago, after she was exposed to someone with a bad virus.

They got better, and their life went on. Lynda didn't recover, and her life did not.

She lived with her two cats Oliver and Lilly. She was fortunate to have some assistance in her home from personal support workers -- many who are chronically ill don't have any help -- and Meals on Wheels.

She was unfortunate in that all her old friendships had fallen away over the years and, unlike many of us chronics, she had no virtual life online.

Lynda had a computer and used to know how to use it, but the cognitive thief CFS had stolen her ability to use a computer years ago.

She had a doctor who did not "believe in" Chronic Fatigue Syndrome. This despite the fact that he stood by and watched her deteriorate over many years.

He reinforced her fear that it was all in her head. Though he would not treat her condition, he also would not refer her to specialists who might have done her some good.

Other general practitioners would not take her on as a patient because she had so much wrong with her. Something wrong with this picture?

Lynda was a prisoner of her frail body and her faltering mental capacities, trapped within her home.

One of her personal support workers had contacted me through my website Ncubator.ca, where I talked about my experience with Chronic Fatigue Syndrome.

When she told me that Lynda couldn't use her computer, I knew from my own past isolation that this is a brutal loneliness.

For that reason, I did something that I never do. I phoned Lynda. Phone conversations tend to exhaust me but I needed to do it, remembering what it's like to be so helpless and needing someone to respond.

We never actually met but we spoke often on the phone over the last year and a half. It was a blessing for me to get to know her.

It was a heartbreak to know that there was so little I could do for her. We talked about our lives, our thoughts, our feelings. We told each other stupid jokes, and laughed like loons.

I had thought Lynda was getting just a bit healthier in the last few months. We talked about having her come to visit.

She was only a four hour drive away from me, but it might as well have been the other side of the world. I can't travel that far, and certainly neither could she.

But talking about that future visit was something to put some hope into. And we did.

And then she disappeared.

She had talked several times about believing she didn't have much time left, and really she didn't want to be around much longer.

Life was full of grief for Lynda. I could only hope that it was just her supreme discouragement talking.

But a few weeks ago, I called her number and nobody answered. I called often, and the sense of foreboding grew with each unanswered call.

I emailed someone who might know what was happening -- I hoped maybe it was yet another hospital stay, or perhaps she was feeling better and was just out when I phoned.

I received an email that confirmed the worst. Lynda had passed away.

We would never talk on the phone again, never have her over for a backyard barbecue. She would never rest in my spare room.

Lynda was afraid that she would die and nobody would notice. I'm doing what I can to make sure that doesn't happen.

I know that life was a heavy burden for her, and had been for years without letup. I know that she had been wishing to die and now the pain and isolation was over for her.

I'm trying to accept that. But mostly I feel bad for me. Because my friend is gone.

Visit Jody's website and blog at http://www.ncubator.ca and http://ncubator.ca/blogger

Add a Comment15 Comments

EmpowHER Guest

Chapter 33 of Hillary Johnson's: Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome (CFS) Epidemic is entitled "HIV-NEGATIVE AIDS."

Neenyah Ostrom book: America's Biggest Cover-up: 50 More Things ...CFS and Its Link To AIDS cites as its #1 THING:

# 1. Some CFS Patients May Be Non-HIV AIDS Cases.

Will CFS Research ever make any progress if we do not acknowledge this fact?

My life with NON HIV AIDS: www.cfsstraighttalk.blogspot.com

September 14, 2012 - 7:01pm
EmpowHER Guest

Sorry for your loss and the ME communities loss. I also have ME/CFS. I have been where you friend was. Unable to even use the computer or even sit up. It's a horrible, dark place. I am one of the fortunate ones that has rebounded somewhat.

My thoughts are with you.

September 14, 2012 - 11:40am
HERWriter (reply to Anonymous)

Thank you.

I also used to be that sick, for a few years. And I am also now one of the fortunate ones, even able to work for a living.

Thanks for writing.

September 14, 2012 - 12:18pm

Thank you Joyce.

I also have CFS. And I agree that XMRV Global Action is a valuable site. They were kind enough to post my article on their Facebook Wall as well.

Thank for writing. I hope you move ahead in recovery from this illness.


September 14, 2012 - 9:21am
EmpowHER Guest

Jody, I am so sorry to hear about Lynda. I have ME/CFS and I totally understand. You were kind to be her friend. Have you looked at XMRV Global Action website? I have learned a lot there and the progress for those of us with Chronic Fatigue. My email is [email protected] if you wish to contact me, Joyce

September 14, 2012 - 9:12am
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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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