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Managing Expectations with a Chronic Fatigue Condition that’s Lasted 13 Long Years

17 Nov

I have had Chronic Fatigue Syndrome for 13 years.  I was soaring in my career and towards my dream of a perfect life.  I was a computer consultant and traveled weekly around the USA, installing banking software and training users on how to use it.  I was also starting my own business on the side which meant waking up very early in whatever hotel room I was in and working on my PC, then putting in a long day's work, and finally coming back to the hotel room and working some more. 

Then I became horribly ill and was put on short term disability.  I never dreamed that I might never work again. 

As of today I am nearly homebound, no children, but thank God for a lovely, caring husband.

Through a pain doctor I discovered your meditations.  My favorite is the Fibro/CFS one.  I also depend on the Headache one for my migraines, the Insomnia one, and the Depression.  Those are my favorites but I have a few others.

I wake up frequently during the night and my husband wakes up too if I turn the light on to read.  Listening to you on my iPod calms me and helps me return to a peaceful sleep.

The only topics I wish you would/could address is having to give up lifetime dreams and goals and how to find others.  Also, since I am only out of bed 4 to 6 hours a day, how can I build up my self esteem?  I often feel useless.

Thanks you so much.  I feel as though you are a close friend.
Alicia

Hello, friend!  Thanks for writing.
Unless you’ve had definitive medical feedback that you haven’t mentioned here, it seems to me that this idea of you having to give up all your dreams and never working again is premature.  You can still get better, work again and get your life back.  It just may not be as intensely worked-focused as it was before you got sick. And maybe that’s not such a terrible thing.  You sound like one of those “all or nothing” people who can’t imagine not throwing yourself into something 200% - but, hey, maybe you could start toying with the idea of doing things with greater moderation and balance.  That would be a fine step toward some sort of eventual re-entry into the world, and would allow you to start thinking realistically about reclaiming your life. 

Also, keep in mind that your confidence has to be pretty well shot, simply from being away from work and your old sense of competence for so long. It would be normal to feel shaky after even 6 months away, let alone 13 years.  But it comes back and maybe adding Self-Confidence to your audio stash might help with that. 

Now let’s talk about the CFS… Have you had a recent medical assessment of your situation?  We’re a lot smarter about CFS than we were when you first got sick - thirteen years ago most docs would have still been thinking that such a syndrome didn’t exist and you were just a depressed, attention-seeking hypochondriac making trouble for them.  Now there are clinics and even health spas that specialize in treating CFS. 

Have you joined an online fibromyalgia support group?  You can get a lot of great, cutting edge ideas and suggestions there.  Click on Living Well with CFS; or Daily Strength might appeal to you.  There are scores of them.  You can even click here  for advice on how to choose a CFS support group!
 
Have you checked out nutritional and vitamin supplements? They’re a huge help, but you have to talk to an expert in this area, not just ask your local health food store clerk (although some of them know a ton… but it’s too random a choice as an information source). 

Are you getting regular body work and/or massage therapy? How about some gentle yoga and mild exercise programs that are appropriate to your situation?  

I don’t know where you live, but there are several medical practices that have an excellent track record with helping people recover from CFS, using a multi-modal approach – Mark Hyman’s practice in Western Massachusetts and Keith Block’s in Evanston, IL come to mind for starters.  Please don’t give up on yourself and don’t get too attached to the identity of being a “sick person” if you don’t have to!  But do consider a shift to a less demanding life style than the one you left behind.

All best,
Belleruth
 

Belleruth Naparstek

Psychotherapist, author and guided imagery pioneer Belleruth Naparstek is the creator of the popular Health Journeys guided imagery audio series. Her latest book on imagery and posttraumatic stress, Invisible Heroes: Survivors of Trauma and How They Heal (Bantam Dell), won the Spirituality & Health Top 50 Books Award