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

Monday, 17 November 2008

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

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written by Sheila Johnson, November 18, 2008

I was glad to see the note and response. I just logged on to this website to buy a CD for fibromyalgia. I have ones for insomnia, chronic pain, weight loss, and relaxation. I love them all...they have really helped me get through rough times. I can relate to Alicia's comments. My physicians have told me that I will never get back to who I was. As a high achiever for 20 years in one company, that is really scary. I don't even know how to start to define who I am now or to set goals like I used to because I don't know what my capabilities are or could be. I can't afford to be unemployed (long term disability) much longer but I don't have the slightest idea as to what jobs I should even be looking at. I am hoping to get into an inpatient chronic pain program to help assess or guide me through some occupational therapy. I have found support groups to be helpful too. I think it would be hard to address this through guided imagery except to acknowledge the anxiety and unknowns that we face.

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written by Gwen Dumas, November 18, 2008

I, too, live with CFS. Drs have told me that there is nothing to be done and I just have to live with it! I can only work a part-time job 10-3 M-F, but usually don't get in al five days in any given week. If I do too much at home, like dust or clean the bathroom, I "hit a wall" and am down for 2-3 days. I am no longer the bubbly, active person I was, but thankfully I have a very supprotive spouse who holds me and helps me get through it all. I have never been able to get on disability, to help supplement my lost wages, because in Montana it isn't recognized as an illness, yet, and we can not afford to travel anyplace for support. I know what others who live with this are saying and my heart goes out to each and everyone. Someday we WILL be heard! God Bless each and everyone of you!

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written by Ellen Bruggeman, Seymour, Texas, November 18, 2008

Thank goodness for Bellaruth...her advice is right on. I contractec CFS on May 14, 1993. I was almost laid off because I only worked half days for a year and a half. After I started working full days, with relapses once a month, I was given the ultimatum to either work full time, be demoted or leave. I asked for some consideration to work at home on days I relapsed, but was refused any appropriate help to cope with my situation. Fortunately I was able to work full time again, but still had monthly relapses, however, management changed and I was forced out of my job. I took another job in the School in the University where I worked, but I was so burned out from my previous job and I broke a bone in my foot which added to my inability to perform well. I left that University to go to another in a different state, but that didn't turn out too well and I came back to the University I had worked for for 23 years and worked temporarily. I tried hard to find a full time job but hiring an older person while against the law to discriminate, I got passed over for younger people whose hiring costs where much lower, I fell into a kind of depression. That was when I met my future husband on line and after 8 months I moved across country to be with him. The good news is that I was finally able to work pretty much full time as a temporary employee before I came to my new state. It is right one when Bellaruth says to think about scaling down your expectations of yourself. I wasn't able to travel like I had been doing in my original job, time differences really do me in. Now I don't work because there are no jobs where I live now that I qualify for, but life is simpler and most people would never know that I had had CFS. In fact, nine months after I moved here I had a stroke out of the blue, Bellaruth's CD on strokes helped me immensely to begin to repair the despair I had after that. Now again, most people would never know that I had a stroke, apparently it was a mild one, but I had to learn how to walk again and use my left hand. Bellaruth feels like a friend to me too. I can't thank her enough to have the CDs I've needed to work through the "bumps" in my journey. Thank you, Bellaruth!

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written by Anonymous, November 18, 2008

I do not have CFS, but I have spent the past several years debilitated to varying degrees from severe endometriosis, PTSD, and muscular injuries from several car accidents. This has been in stark contrast to the days when I was a very successful career woman and felt like I was on top of the world. While I have always maintained hope and an active pursuit of healing (and have come miraculously far along that path), it has been very difficult at times to feel as though so much of my life has been wasted in disease and dysfunction and to despair that I may never be "my old self" again. I have found the imagery in the Ease Grief and Self Confidence CDs to be extremely helpful in letting go of old ideas of who I am and embracing the life I am living, as well as envisioning an even better life to come.

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written by Glennis Anderson, November 18, 2008

I too was diagnosed with Chronic Fatigue Syndrome and was very ill for over a decade--unitl I met a D.O. who took one look at me and said, "How long have you been that sick? You have serious food intollerance." This doctor suggested the elimination diet to figure it out on my own as tests were not accurate. I followed it and it took 3 years to find that I could not eat glutten, corn, dairy, vinegar and recently canola oil. I no longer have CFS unless I eat something that is wrong for me. IT'S WORTH A TRY! Best wishes! -Glennis

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written by Belleruth, November 19, 2008

Very interesting point about the food intolerance. Thanks for that insight.

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written by jane, November 19, 2008

Belleruth,

As I read this, I was wishing and hoping there was a way to respond. And there is was - a response section!

I was dx'd with CFS and Fibromyalgia in 1998, being sick with them at that point for about 3 years. It was beyond debilitating and did a real number on me on so many levels. I'm an artist - I had to put my work away. I kept my job, barely. It was all I could do to keep it and every day I went in I was frightened I was paying a too high a price.

The suggestions you make are worth a try - all of them, as are staying with one's ear to the ground as to everything and anything else worth trying. I lost alot - like my marriage - but not my dreams. I started to feel better in 2002.

Now, I'm doing my work again. There are long periods of time when I forget about that diagnosis; it no longer fits. The left over physical effects are not that hard to manage - dentures, herbal blood thinners, thyroid medicine. The rest, is gone. It can happen. I don't feel the compunction to research the illness constantly now; I don't even really keep up with current research as before (there are some great support groups - CFSMExperimental on yahoo being one). "How" to improve is a big question, and a long answer. What I wanted mostly to share is that it really can happen.

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written by Anonimus, Sunny State, November 19, 2008

Adding to the food intolerance comment, I would like to suggest looking into either SAD if your symptoms are worse in winter, or one or more of the Sleep Disorders, esp. Delayed Sleep Phase Disorder - which can be managed by sun exposure in the mornings, and more - look up Sleep Disorders in Wikipedia.

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written by Priscilla Young, November 19, 2008

Chronic fatigue and the illness which proceeded it can be caused by biological toxins such as toxic mold, toxins from lyme disease or toxic forms of algae. To chack out this possibility go to chronicneurotoxins .com and take the symptom screen. If symptoms raise concern spend the $15 to take the VCS test, visual contrast sensitivity, which test for damage to the optic nerve caused by these kinds of toxins. This test can be taken over the internet. Use a TV shaped monitor rather than a flat screen because it yeilds a more accurate result. Read Dr Shoemaker,'s book Mold Warriers. I went to Dr. Shoemaker for my illness. I used to sleep 12-14 hours a day and now sleep 9-10 hours. He is in Maryland, people travel from all over the world to see him.
I also suggest trying brainwave biofeedback, neurofeedback, where you exercise regulatory control of your brainwaves. I found this so helpful that I bought my own equipment professionally guided home training and then became a professional practitioner. For more information go to eeginfo.com. Research articles, case studies and a directory of providers are available at this site. I am currently working with two clients who have chronic fatigue/narcolepsy and they both experienced tremendous gains from the first treatment on. The newest client after three treatments found that she had no fatigue for three and a half days. With additional sessions this effect should hold.
I was able to learn a whole new career and reenter the workforce as a self employed professional. You are worth the investment. It took me five years to figure out the cause of my fatigue/mental illness. My greatest wish as I searched for understanding of what had happened to me was that somehow I would be able to use my experience and all the knowledge I gained to help others who were struggling in similar ways. I have brought my dream to life.
Best Wishes for your recovery,
Priscilla Young

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written by Anonymous, November 19, 2008

I have had what is diagnosed chronic fatigue syndrome/fibromyalgia for many years and I know how truly miserable these conditions are. They are NOT a joke or not "real"! However, please don't believe people who tell you they can't be cured or at least greatly alleviated. There are clinics out there, using alternative approaches (I can't speak about allopathic approaches since I didn't use those), who have been quite successful at it. I used the approach from the clinic at www.chronicfatigue.org, with particular emphasis on stress management and diet (they recommend the Weston A. Price Foundation's diet (www.westonaprice.org), and I have almost completely reversed all of my many symptoms! I was very very fortunate to get treatment from them in the beginning, so I was not bedridden as some people become, but I was down to being barely able to work a part-time job - now I am working a very demanding full-time job AND taking college courses and I am fine - much healthier than my co-workers! I am very careful though to eat a very healthy diet, get plenty of sleep, and I use guided imagery often to manage stress to prevent any relapses. I also monitor my health carefully to avoid taking on too much. Best wishes to you - don't give up! There were many times I thought I would never get better, because the going is very slow at first, and there were a lot of setbacks and disappointments on the way, but it can be done!

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written by M.C., Boston, MA, November 21, 2008

After 14 years, I have a life again.

I was diagnosed with Chronic Fatigue Syndrome after everything else the doctors could think of had been ruled out. It was the only diagnosis left for the crushing fatigue, cognitive problems, and pain. By chance I met a physician socially who gave me better help, and it turned out I had Lyme Disease, Bartonella, and food intolerances. Testing for Lyme is not reliable; the test only measures antibodies, and there are many reasons the body may not be producing antibodies. Also, the CDC requires 5 positive proteins or "bands" for a positive Western Blot; but *any* Lyme-specific positive band is highly significant. Doctors are only beginning to catch on. (See www.ilads.org). Lyme is a clinical diagnosis, and should be made by a qualified Tick Borne Diseases specialist who can also recognize the other potential tick-borne infections such as Erlichia, Babesia and Bartonella. Many docs don't know what these are and don't test for them. The most reliable Tick Borne Disease testing in the U.S. is through Igenex in CA. (see their website). They will send a free test kit and instructions; your own lab or doctor can draw the blood. This lab reports more of the "bands" or proteins than any other lab (especially Quest), and is directed by a Tick Borne Diseases researcher. I can't tell you how much better I am after long term antibiotic treatment (which is controversial right now). Please don't let anyone tell you that "there is no Lyme in -- [fill in the blank]." It's in every state in the continental U.S.

I should add that the food intolerances is also a real possibility; I had a gluten and dairy intolerance as well, but had no G.I. symptoms, only terrible fatigue and spacey-ness. I notice an immediate difference if I "cheat" and eat bread. Also, it's worth looking into the mold and yeast issues. An integrative doc who is willing to do a trial of Diflucan or Nystatin or other yeast-killing remedy is worth their weight in gold. If you do go on antibiotics for any reason, make sure to take probiotics to offset the yeast. Yeast can be a systemic problem even with no localized infection. I was sick for 14 years and have hope (and educational goals!) in my life now.

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written by Ann, November 25, 2008

One person in all of the above comments mentioned sleep disorders as possible causes of chronic fatigue.

I want to highlight that. I had fatigue that lasted more than 20 years, and was finally diagnosed with sleep apnea. I sleep with a CPAP machine now, and have recovered to a degree I did not think was possible.

I recently spoke with a doctor at Cleveland Clinic who specializes in research on fibromyalgia and chronic fatigue. He said he thought that ALL fibromyalgia had sleep disturbances at its core. I don't know if I am willing to go that far -- but I think that lots and lots of people with chronic fatigue have sleep disorders. It makes sense, doesn't it?

I don't mean by this to negate anyone's success with managing the chronic fatigue in other ways. I just want to point out that having careful screening for a sleep disorder is something a person with chronic fatigue should do early in the process of seeking solutions, not as a last resort.

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written by Pat Franco, June 04, 2009

Consider another opinion from an endocrinologist. Thyroid disorders are prevalent in my family with diagnosis as early as high school. Given the young age, I think sometimes it is naturally assumed that CFS is the reason for similar symptoms. Hope this helps!

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