(Please welcome Carol to Health Rising as she tells us her chronic fatigue syndrome (ME/CFS) story. We didn’t have a story section on Health Rising and I didn’t think of having one until Carol sent me her oh so evocative story… Now we do… Want to tell your story? Check out our Contributing Your Content page here and get in touch.)
Introduction
When I first got sick in 1999 at the age of 55, I was terrified of a CFS diagnosis because I’d heard horror stories. It wasn’t a death sentence. It was life in a maximum security prison without parole with frequent segregation in solitary confinement.
I knew there was no cure. I knew that many doctors ridiculed CFS and blamed it on depression, that few studied it, and that it had a general reputation as a “yuppie flu” suffered by the lazy and crazy.
“It wasn’t a death sentence. It was life in a maximum security prison without parole with frequent segregation in solitary confinement.”
I sure wasn’t lazy but was I crazy? Could be. I had a crazy neurotic hypochondriac mother. But I’d had good health and sanity for 55 years. Why suddenly would I slip into madness? The frequent panic attacks and debilitating clinical depression had to be the result of this illness, and not the cause.
It took 11 years before I felt sufficiently strong and clear-headed to write about my experiences. At first, I only wanted to document my encounters with the many different doctors in my search for treatments and a cure. I’d found myself staggering through a deep dark forest of mists and twisted oaks, sacred groves and caves, trolls and dragons, ogres and wolves and witches. Maybe a few grail seekers. The actual writing, however, led me through a woods larger than I had initially conceived, and I wandered off onto many side-paths in order to consider the impact of the disease on many aspects of my life.
And after fourteen years and the arrival at somewhat improved health and equanimity, I found the courage to read those other accounts by CFS sufferers which had intimidated me during the initial stages of my disease. The disturbing stories of personal pain and loss, of hassles with doctors and treatments, and of the history of CFS in various books, magazine articles and websites helped me understand my own experiences and focus my thoughts. And, of course, writing forces me to know myself and my struggles in new and important ways, some uplifting and some depressing, but all enriching, helpful and productive.
People whose CFS begins after a precipitating flu-like illness describe experiences about the course of the disease similar to my own, yet each writer’s voice stamps his or her account with unique perspectives and attitudes. I say that hoping that what I have written will prove meaningful and shed some light on this “hell on earth” disease. I also hope that adding my story to theirs will strengthen the fight to force medical authorities to pay official attention to CFS/ME as a life-long destroyer of physical, mental and social well-being which prompts hopelessness, poverty, reclusiveness and, for some, suicide.
Onset – January, 1999
One freezing January Monday in New Jersey, my principal calls at 5:30am. The furnace is broken and so high school is cancelled for the day. As Humanities Supervisor, I’m to start the phone chain for my departments. Yes! A totally unexpected holiday! I get a chance to take care of stuff I can’t fit into the weekend, and maybe even find time to make my favorite Gypsy soup from The Moosewood Cookbook. It’s all good.
I’m 55 years old. I usually power- walk two miles each weekday morning before work, and three or four on weekends. This morning, however, I make my phone calls and crawl back into bed. It’s delicious under the comforter, and I’m feeling the awesomeness of unscheduled freedom.
A simple vaccination started Carol’s 15 year bout with chronic fatigue syndrome
I am very happily married with two wonderful sons in their 30’s. I’m busy and energetic, enthusiastic and successful in a job I love as an English teacher at the high school in the community in which I live. I don’t love the Humanities Supervisor part of my job so much. I may get moody sometimes (though not so much now as before menopause when I was premenstrual and slammed doors into walls, leaving a tell-tale hole) but I’ve never known depression. Since the boys finished college, my husband Steve and I have the money to travel, and in the last few years have walked, trained, bussed, and boated through Alaska, Italy, England, Scotland, Wales, Cape Cod, the American Southwest, California, France, and Canada. I’ve discovered I like to hike .
I have my toast with melted cheese, an orange, and sip my coffee as I read the whole New York Times main section and op ed pages.
No Big Deal
I pick up my glasses with the new prescription at the optician’s office. Then I stop at my internist’s for a flu shot. I’ve been meaning to get the shot all winter but just never seemed to have time, and yes, January is a bit late, but many of my colleagues and students are suffering from a bad flu, so it still seems like a good idea. No big deal. A few minutes in the waiting room, and then, “Mrs. Lefelt?” I pop up and follow the blonde nurse into the examining room where we make small talk as she jabs my arm, and poof, I am finished and go home.
No big deal.
It’s Thursday, three days later, and I don’t feel well. I stay in school, but by the evening, I’m flat on my back in bed with a severe sore throat and chest, body aches stronger than anything I’ve ever experienced, pounding temples, and the singular flu-y head-spinning wooziness and sinus congestion. Was the flu shot just too late? Or is this the result of the flu shot itself?
I stay home from school for a week, mostly in bed, wondering if that shot made the illness worse, because this is the sickest I’ve ever been. My husband goes to his job as a Superior Court judge and leaves me with a cup of tea and 2 slices of toast at my bedside, and then I have to fend for myself until he comes home around 6pm.
I don’t improve.
I call my doctor. She prescribes Ampycillin.
At the end of the week, I force myself out of bed and into clothes so I can return to work. I can’t leave my two English classes floundering any more, and as supervisor I am behind in my teacher observations and evaluations. But I’m still staggering with an unfamiliar weakness in my legs, and my chest continues to grate with each breath. I seem to feel better for a day or two, and then relapse, not with the extreme symptoms that began this siege, but with disturbingly deep aches and joint pain.
One day I’m at a meeting with the school’s special services team, and my upper chest and throat are so sore I can barely talk. I return to my internist’s office that afternoon and she decides I have tracheitis. She prescribes a 5 day course of Zythromyacin.
Three weeks after the flu shot, I think I am getting better. I am stronger and my mind is clearer. So, of course, I resume my morning walks before school. I start slowly, since I still experience a malaise from having been inactive and ill, but every time I walk even a little, I feel terrible again the next day, and it takes days for me to regain some strength.
This continues for a few weeks.
I feel better: I show up at a parent meeting at night, and then pay for the activity later with increased brain fog and body aches. I recover enough to meet my son Todd and his friend Marco in Manhattan for Todd’s birthday. I drink a martini and giggle a lot, and am then exhausted for the next three days. Better: I clap and snap my fingers to the rhythms of a performance of Smokey Joe’s Café at New Brunswick’s State Theater. The result: the worst throbbing headache ever.
Way Beyond Sick
It’s President’s Weekend in February. In April, my mother-in-law will be 80. Steve and I have the task of finding a venue for Thelma’s party. We’re at the Doubletree in Somerset, New Jersey. I’ve been trying to ignore aches all morning.
Suddenly, I realize I am way beyond sick.
Like many people with ME/CFS Carol remembers the day she got ill and then the day she got really, really ill
The pains in my joints, limbs and head are so severe I must sit. My brain is swimming and I can’t hold on to a thought, much less listen to the hotel representative. I start to panic. Every cell in my body feels inflamed.
Steve drives me immediately to my internist’s office, and I insist that I must see her that day. I sit and sit and sit until she has a few minutes. I look at the others in the waiting room; I believe I’m sicker than any of them. In fact I’m convinced I’m dying, that the flu shot has introduced some poison or alien organism into my body which is now killing me. I can’t even read a magazine. In spite of all this fear, however, I’m comforted to be in the doctor’s office. She’ll know what’s wrong, and surely there’s a medicine or remedy she can prescribe.
Yup, she’s all calm. It’s just a bad flu, totally unrelated to the inoculation. “The worst that can happen with a flu shot is redness around the area or, at most, a day or two of flu symptoms. This year’s strain of flu is particularly bad, and it’s just taking people longer to fight it. I see this all the time.” I try to convince her that what I’m feeling is extraordinary, but she reassures me that I’ll recover.
I go home and get into bed…..
Today
Once some doctors derisively called it “The Yuppie Disease.” Many still believe it’s completely psychological, “all in your head.” John Falk blogs on The Huffington Post:
“Until now, I’ve told no one except a small inner-circle of family that my mysterious breakdown in health, vitality, and cognition that started the night of May 5, 2007 was not due to an exotic virus I picked up in the Congo while on assignment for National Geographic. The truth? I’m actually a textbook case of someone with CFS, a syndrome I sniffed at until it happened to me. For the sufferer CFS means a total health breakdown, like a plane that inexplicably begins tearing itself apart mid-flight. Together, all the various dysfunctions associated with it leave the patient in a state of health more debilitating than chronic obstructive pulmonary disease, heart disease, or multiple sclerosis.
There is no known cause for CFS, and most terrifying from where I sit, no cure. . .When you have CFS one of the greatest battles you fight are the ignorant smirks and expressed disbelief of those who think it’s all in your head; that is, those that don’t live with you and live the truth of CFS everyday. Negativity and doubt amount to an energy drain you can ill afford. It’s the reason I have refused up until now to identify myself as a person with CFS.”
“For about eight years, I wanted to kill myself every day…”
Borrowing from the English name for CFS, the disease is now called ME/CFS: Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome. According to The Hummingbirds’ Foundation for ME , “ Myalgic Encephalomyelitis is primarily neurological, but also involves cognitive, cardiac, cardiovascular, immunological, endocrinological, metabolic, respiratory, hormonal, gastrointestinal and musculo-skeletal dysfunctions and damage. M.E. affects all vital bodily systems and causes an inability to maintain bodily homeostasis.”
This is a disease that might not prove fatal (though some believe it increases the risk of heart failure and cancer), but that can be so awful that one of the prime causes of death among people with CFIDS is suicide.
For about eight years, I wanted to kill myself every day…
I’ve been sick with this illness since February of 1981, 32 years, now more than half of my life and I still am seeing nothing really truly changing about it. 32 years of not only all the cruel symptoms but the even crueler attitudes towards it that still dominate much of the medical community as well as the press.
Month after month there seems to be a new study that points out yet another body function that doesn’t operate properly in ME/CFS patients. Duh! I’ve read of stunning results showing staggeringly bizarre immune system pathways, etc, so frequently that it has become laughable each time a new headline comes into view.
How is it possible that there can be so much research showing all of the countless abnormalities in people with this illness and yet we still seem to be not much further ahead than when I got sick all that long time ago?
I don’t know Kathy….I got sick about the same time you did. I don’t like to think about how long its been. Despite that fact that I’m in much better shape than most people its been a rough road that’s for sure. I can’t remember what it was like anymore to be healthy…Its kind of shame…
I can only hope that at some point all this research will come together….and every bit of it will be important. I still just cannot understand how the federal government has been so willing to turn its back on so many people. The system is not set up to address need – that’s for sure. Maybe what people with ME/CFS have gone through will some day lead to major changes for that institution. I certainly hope so…
This title is a running joke between me and my wonderful son. He has taught me how to blow off ignorant peoples remarks with laughter. Every time I have to explain why I cant do something to people who are just plain DUMB, he will say ‘but you don’t look sick’, love that boy, I am blessed to have a funny kid.
Loved this article…thank you Carol!
You are blessed! It’s so helpful that at least those we love believe and empathize. I couldn’t have survived if my husband weren’t so wonderful.
PS..I remember the exact date and time of day I got sick..never forgot it!
The first Sunday in December 1993.
While I was reading this story it brought it all back, too sick to live really, but I did. In eight years I stared feeling better and almost back and that lasted eight years. I am now in the fourth year of it again. I had the same symptoms of panic attacks and racing heart a few times before it struck. I was afraid it was coming and then I was suddenly in bed again.
I did not have the flu shot this second time but I did the first, two weeks after and down.
I am doing better again and do think Herpes viruses are a big player for me. I still have some EVB activation and hoping to get that down.
The illness is beyond belief and the worst part is more and more are getting sick.
I did look sick in the acute stages.
This is one of my favorites. A friend of my husband said he could not believe that anyone that looked so good could be in such ill health.
I would like everyone to have a taste of it for a couple weeks. just so they know what it really is and it is real.
Brilliant ! Carol your style and awareness makes me want to read more. You are expressing everything that I feel in a very sympathetic way. I look forward to hearing more.
Thanks, Lyn.
Thank you for sharing your story. I’m sure you will hear many times ” i could tell the (almost) same story about myself”. I too remember the day & aprox time i got sick 16 years ago. Never to recover my health.
Keep in mind that this disease has gone on unsolved and untreated because key figures in the federal government have gotten away with not doing their jobs, dismissing the disease (in part because of it’s preponderance of “whiny women” patients”) and blocking research. Kaplan, Holmes, Reeves, Straus, Fauci, to name key players. Also their supervisors, whose names I generally do not know, who let them meander on without producing worthwhile science.
These people chose to leave the disease to take our lives rather than work to save them. The Lord has taken Reeves and Straus. The others are doing pretty darn well.
But at least now we have doctors and researchers focusing their efforts on understanding and treating ME/CFS, even if, as Kathy says above, “Month after month there seems to be a new study that points out yet another body function that doesn’t operate properly in ME/CFS patients.”
I blame the media far more than the government. They are the ones who gave it the dismissive names and attitudes in the very beginning and far too many continue to do so.
Never yet have I seen a program that was going to feature something on CFS that didn’t turn out to do more damage to patients than good.
Thank you for your testimonial, I was day dreaming the other day about just running, and running until my side hurt, like before I was sick. Somthing so simple would bring me such pleasure. Before I got sick I was getting my aerobics instructor certificate, a working travel RN, had two homes, two cars, as a single mom. In 2007, everythings gone, I moved into a travel trailer on my parents property, and in 2008 I finally had to leave work ( down to two days a week), I couldnt even maintain two days a week. Final disability approved in 2010.
Another athlete! Oh my gosh…it just makes me want to cry…
from two homes to a travel trailer on your parents property…Corinne (to blog soon) was an athletic trainer…I was running every day…I don’t even dream about it any more….its been too long.
Being angry just makes things worse..though….
I am (or was) an RN. To my best recollection my symptoms started the day after I received an MMR vaccination. It is nice to communicate with people that understand. Well-meaning friends and family tell me to “just get up and take a walk”. They act like I am a liar when I tell them that I can’t. To everyone out there, YES I do want to have a life. After over 15 years I still don’t have a healthcare provider that understands what is wrong with me. I have Tricare for insurance so my choices are limited.
Do I want to give up? Yes, but my parents are in their 80s and I could never hurt them. Some weeks all I am able to do is go visit them for 4 hours on Sunday but that is all it takes to make them happy and all it takes to make me continue on.
I am going to say something a little forward. When we have someone like Kathlene Sebulias who says “Some live, and some die”, talking about a ten year old girl needing a lung trasplant, we don’t have much hope.
Thanks so much for writing your story Carol! I’ve now traced my own CFIDS illness back to having mono at age 13. That’s the same year I was prescribed Tetracycline (daily) to prevent acne by my family physician. Little did I know back then that Tetracycline is a mitochondrial toxin and also suppresses the immune system. That was 39 years ago! I’ve only recently come to understand the root of my remitting/relapsing illness which has taken so much from me over the years. My diagnosis came about a year ago after having an immune workup which showed the typical markers for this illness. Prior to that, each relapse solidified the belief in my families mind that I was a mental case or malingerer… which I somehow knew wasn’t true but couldn’t prove. The isolation and loss over the years has been devastating.
Great comments and they go right to our HEARTS. Mine started with CMV, EBV and MONO. in Aug 19, 1989. Fortunately I was seeing an Endocrinologist as my primary physician and he ran a test for Mono. Referred me immediately to an Infectious Disease Dr. that was doing a study on Immune Globulin on Aids patients. He was also using this on CFS pt. suggested I try it. Within 3 weeks I started feeling some better. Was out of work for 3 months.
I also was an athlete walking 10 miles a day 5 days a week. Mine has never gone away-however it has gotten better. Then I relapsed terribly 3 years ago when my husband had an accident. Never been well again since. Immune Globulin, sold to another Co. formula changed and it does not work for me anymore All of the Dr. I had that treated me have retired and the ones now in the Conventional community tell me I am trying to force them to adopt Holistic medicine.
I do have an Environmental Dr. that is open minded and trying. Also a Chiro Dr. that helps with the dizziness. I know I have ME/CFS and many of he other entities. Just can’t find anyone here in SE to listen that is a specialist
in this.
Thank all of you for your wonderful heartfelt comments. Would like to hear more.
Incidentally- My Chiro Dr. really helps me with Dizziness as he says my Axis gets completely off. Almost like my head is sitting wrong on my shoulders.??? ALSO THANK YOU CORT!!!!!!!
San Diego#1
Also meant to note- I have been seeing a specialist out of town. Too sick to go back. Have taken all of his tests and Echo to my Conventional Dr. They will not even read them.
San Diego #1
Yes. And in later posts, I’ll describe my own shuffling among various doctors and treatments, which for many of us is even more complicated by the relapsing/remitting course of the disease.
Hello Carol. I am based in Montreal and suffering ME as you and many others. Just want to tell you that I read your story and I cant hardly wait to read part II!
What you are doing for you and us, is quite essential and important, even if we read many stories.
Many stories are also a personal story as yours… Thank you for taking time to reach us, for your great contribution and huge generosity, Carol 🙂
Blessing to all who share our world, no matter how severe, we persevere. Carol, you eventually got your story out. I cannot thank you enough for sharing. Being validated is a step in the healing process, there isn’t a “cure,” but it sure eases our mental and emotional suffering, which is equally important.
Great idea Cort. I hope many will find sharing their story is cathartic.
Think adversity? See opportunity. In healing and hope.
Hello to you other (fellow) Chronic Fatigue sufferers. My story (in regard to the onset of Chronic Fatigue Syndrome) started after i got violently ill and I vomited. This was around 10 years ago. At that point in time, i thought that i would go on to recover soon after!
After being very ill (above) I was aching over a lot of my body for the next (maybe 10 days?). During these days, i realised that i was experiencing a new way of feeling ill. After these days went by, I became very ill again. I do not think that i vomited again though.
I went on to be ill for months; perhaps 10 months? During these months, i was weakened by illness, felt skin sensations (burning and tingling) and lots of nausea. It was not possible for me to walk much without feeling too ill.
After this 10 months went by, i slowly got a bit stronger and less ill. As i write this letter, i have been ill (another year and another time) for nearly 7 weeks. Yet my medical tests do not indicate that i have an infection. I still suffer from skin sensations that are not normal, and in the same spots as above.
Looking back over the last few years, i am seeing a trend, where i present to the doctor, feel unwell, but my blood and other tests are normal! So unless the tests that i get are ineffective or inappropriate, either i must be imagining being ill or not being truthful about being ill, OR it might have something to do with C.F.S?
By the way, i was diagnosed as having C.F.S by a medical professional. I do not suffer from a lack of energy. I suffer from joint soreness, body aches, skin sensations and a feeling of being unwell.
I cannot donate to this website via the internet. I can really sympathise with the comment about feeling being in jail with this illness. I am worried now that i will never be reasonably well again.
Do any of you feel that you could wish that you could live without the burden of this mysterious affliction?!
I find that when i feel particularly ill, then i do not wish to watch the t.v news!
Good luck to you all in internet land!
Bye-Phil.
Hi Phil
Like you I do not suffer from lack of energy….but have joint soreness, muscle aches (especially my arms and legs) skin sensations all over which have now progressed to my boobs (which I’ve never had except after having my baby) and skin sensitivity…. plus hot areas that are cold to the touch especially on my legs!
I’ve had good health all my life except for mild Asthma diagnosed in 1995 and mild COPD diagnosed in 2009.
But after returning to the UK from Spain in 2011 I was coerced into have a flu injection which I’d never had before and then a one off pneumonia injection because of my lungs.
I avoid mass vaccinations due to pandemic scares, being aware that the drug companies profit more than the individual……and I don’t have antibiotics when not well with chest infections etc….just take myself off to bed to rest it out.
It’s got me thinking that maybe I should have just continued looking after my health and not listened to the doctors…..and I probably wouldn’t be feeling as I do today.
I can see how people can become depressed.
Fortunately, I’m not the depressive type and I suppose because I’m in my 60’s having lead a very interesting and varied life…..I feel perhaps it’s ok to slow down a little and except that I’m still alive!…..:-)
Now of course, I am much more aware of what suffers of ME and Fibromyagia are going through and can only sympathise.
I’m off to find myself a doctor who doesn’t think it’s in my head ……as the two that I’ve tried to talk to in my local practice don’t want to know!
Wish me luck!……..as I wish you luck that yours won’t get worse!
Best wishes….Sue.
Hi Cort and Carol and all the responders to this story. Thank you for this post. Cort, would you connect me to Carol or give her my email, regarding our ongoing book project about ME/CFS for the public audience?
Thanks so much.
A great, great article. I especially related to the “life in prison” feeling. Hoo boy! It’s rough.
Please can anyone suggest books like the ones Carol refers to which capture the essence of the physical, emotional and psychological impact of this illness. I’m too fog out to understand all of the horrors of my last 18 years experience, let alone explain it to my family. Thanks.
Some books I’ve read include:
The Sounds of a Wild Snail Eating by Elisabeth Tova Bailey
The Night Side and In the Shadow of Memory by Floyd Skloot
Encounters with the Invisible by Dorothy Wall
Love and Fatigue in America by Roger King
We’re Not in Kansas Anymore by Rik Carlson
and the formidable Osler’s Web by Hillary Johnson
Other more recent titles are available from Amazon, and there are many websites and blogs about ME/CFS that express the experiences and feelings of sufferers. Here’s one that lists other blogs too.
http://quixoticmeblog.blogspot.com
Hello, I am 41 years and com from Norway. I am an RN, and had to have the hepatitis A+B vaccine 3 times as my patients were drug-addicts. The third didn’t take, so I had to have a hepatitis B booster vaccine. This was 1 year ago. I remember the exact moment I got sick. It was 3 days aftes the vaccine shot. It was a sunday, and I was sitting by the pool, relaxing and having a good time watching the kids play. Suddenly I felt real awkward. Everything “changed”. Nothing felt real anymore. I felt like I was coming down with an extreme flu-like illness (an I sort of was….). I felt dizzy, sick, confused, sensitive, stupid and many other things. I also got a weird headache. I have been feeling this way since, and it took almost a year for the doctor to stop saying I was depressed. He finally has referred me to a neurologist. And a physiotherapist. But she also keeps talking about my past and tries to find some mental explanation for the way I feel. Not tp be believed is maybe the most challenging part of this disease. It always makes my symptoms much worse. Thank you for sharing and making me feel less alone. Tina
Read more: “But You Don’t Look Sick”: A Chronic Fatigue Syndrome Chronicle – Part I http://www.cortjohnson.org/blog/2013/06/14/but-you-dont-look-sick-a-chronic-fatigue-syndrome-chronicle/
Hi Tina,
I wonder if you know about this article from ProHealth, “Hepatitis B Vaccine Has Been Ruled to Cause Chronic Fatigue Syndrome.” The patient was awarded an annuity to pay lifetime medical care expenses on top of the $1.1 million cash award for medical expenses.
http://www.prohealth.com/ME-CFS/library/showArticle.cfm?libid=18212&B1=EM071713C&utm_source=EM071713C&utm_medium=em&utm_campaign=MECFS&slvor=11189.1104616.0.1.0.138455&eid=valfree60%40hotmail.com
Hi,
It’s great to hear other people’s stories and know that I am not alone in having to deal with very arrogrant doctors who think they know everything when they don’t have a clue. Thought I had the most understanding GP in the world and then it turned out for the past 3 years he’d been forming things about me in his mind behind my back which weren’t true.
In a way having this illness has made me learn a lot I would never have learned had I been healthy, although there are moments when it feels like a high price to pay for knowledge. Quick question – my CFS started after the end of a period of prolonged stress rather than from a flu jab or virus – has anyone else been diagnosed in this way? For the record I’m not mentally ill or struggling with anxiety etc but I have heard people saying if you don’t get it from a virus etc you might not have ‘real’ CFS…or maybe it’s another sub-type of the same illness?
Whatever it is, the NHS have effectively left me to rot. It’s like the CFS diagnosis is a dust-bin diagnosis in the sense that it gives them the licence to stop looking. Thanks for any responses 🙂
I just found this cite (so Sarah I hope you circle back and see that you are not alone in experiencing CFS without necessarily tracing your CFS directly to flu or virus exposure). I have had the symptoms of CFS and Fibromyalgia since at least November 2009. I was not correctly diagnosed until March 2013. Like many others, I realized something was terribly wrong when a number the common CFS symptoms began to emerge and significantly (and negatively) limit my daily activities. My symptoms began as tiredness. Then back and leg pain. Then all-over pain. Then the tingling of my hands and the twitching of my feet. Then ultimately concentration issues presented. Like many others, I was tested for everything that might be possible contributors – first by my primary care physician, then an internist, then a rheumatologist, and ultimately a neurologist. All encouraged me to eat well, get plenty of sleep, and to exercise (things I had been doing for years – as a swimmer and runner). I had never suffered from depression or anxiety, with the exception of a short period in 1990 when my first husband left me following his completion of his medical residency program. In order to move forward, I applied for law school and was accepted that next year – my Plan B. I graduated and was invited to join a litigation boutique shortly thereafter. I had no symptoms at all during my early law career.
Prior to my noticing these symptoms with any regularity, I had practiced law at an extremely aggressive litigation boutique, followed by providing new business development expertise to a 200 lawyer firm (for well over a decade). For those years, my schedule and stress were unusually heavy, given my responsibilities and work environment. During the last 7-8 years of this period, I remarried; drove 1-1 1/2 hours in traffic one-way to work each day; travelled extensively to visit 5 of law firm office locations to consult every few weeks; dealt with a number of challenging business development related-issues every week with key management; answered to leadership in all 26 practice areas, as well as the Chair, Managing Partner, and Administrator (Business Manager); adopted a child; and watched my slowly father pass away.
As everyone who has had CFS for any length of time is aware, there are various theories of why some and not others are affected – stress, depression, inflammatory diseases, a mutation of gene(s), the inability to break down chemicals necessary for the brain to function correctly, etc. Mine came on heavy when I began to pull back from my heavy work schedule and then take a break from work in 2009. The bottom line is that no one yet knows all of the triggers tied to this illness. Thank goodness all but one of my doctors understands this is a disorder with real symptoms (and not just one’s imagination at play). Further, thank goodness I have a great family who believes and supports me and my struggles with getting the most out of each day regardless of what symptoms might present themselves each morning.
What a story Laurie. Another runner/athlete down with ME/CFS….It’s amazing..Thanks for telling your story.