Earlier this week I posted about how as a society we have The I’ll Sleep When I’m Dead Theory mentality when in actuality, it may be causing more harm than good, in my opinion. How many times do we hear over and over again that if we are not getting the proper amounts of sleep ( at least 7 – 8 hours a night, more for those with chronic illnesses), our bodies are ticking time bombs that cannot continually keep up with the demand that we are putting on them?
I wanted to continue on with this discussion because of one of the comments I received and because after re-reading my post, I don’t feel that I clarified or explained my feelings or conveyed my true thoughts well enough and I offended someone in the process.
I received a message from Monica on this post that I would like to share with all of you and then I would like to continue my conversation on this topic because I think it is a good discussion point that many of us can go with and really need to think about. I thank Monica for taking the time to post her thoughts:
I, too, have asked myself some of these same questions, which really are a way of saying: to what degree did my lifestyle contribute to my becoming ill? Or, even more difficult for me “to buy”, is the assumption that, it in fact, did.
I think the jury is still out on the complex set of factors that may be involved in CFS/ME, 2 of the maladies I suffer with. I really hesitate to “blame” myself, because there were many other people that had similar life tracks (in my case, went to college, medical school, did a residency, put off having a child until I completed my training and began a professional career. I was not someone who was on “every committee”, or was driven to be a superior academician. I wanted to be a competent doctor like many of my peers, and most of them did not become sick in any way.
I did lead a full, satisfying, life, but don’t for a moment think that I simply “brought this illness upon myself based upon my lifestyle” and do not think that if I had lived differently I would not have become sick.
I am someone who knows THE moment when I became ill…there was nothing gradual or vague about the onset. I got a severe flu-like illness in 1983, from which I never fully recovered. My symptoms waxed and waned, evolved over time and it spite of what I consider state of the art treatment, my condition became such that I had to stop practicing in 2000. I have adjusted a lot, I have a positive outlook, although I have experienced a tremendous amount of losses in my professional and personal identity and independence and ability to function.
But, I actually find it offensive, at least as it relates to me, that it was my lifestyle that precipitated my illness. I still believe there will be an as yet uncertain infectious agent and possibly necessary co-present co-factors that converged, to produce this illness, but I do not think, the “if only I had, eg, worked out more at the gym, or slept more, or been a vegetarian or what have you, that I would not have gotten sick.
I was a hard-working person, but not a driven or compulsive person compared to many people around me (my patients, friends or colleagues!)
And that’s all she wrote!
I fully believe that ME/CFS & Fibromyalgia are physical diseases. Don’t shoot me, but I DO believe there may be some sort of underlying psychological component, at least in my own situation, but bear with me for a moment.
I had actually told a friend of mine this at one time and I told her I had never posted this because if I did, I would probably catch all sorts of grief from people but I try to be honest and this is how I feel. I’m not a doctor, I don’t have any kind of medical training, but I think that trauma, stress, and things we experience in our lives has a great effect on our health. I am someone who internalizes everything and it has taken me years, and I mean years, to come to terms and to even admit to trauma that happened to me in my life and holding that kind of stuff in cannot be good physically.
I was always sick, even as a child and I believe I always had these illnesses. My mother always said I needed more rest than my siblings and even as an adult, before I became full-blown sick, I tired easily after working just normal, full-time hours. Once I was out on my own and started feeling like I had to prove myself to everyone and the world that I was Superwoman, I started having a lot more health problems, slowly but surely. I ended up with a really bad case of bronchitis and walking pneumonia – and I REFUSED to stay home from work to rest. I ended up with Mono and LAUGHED at the doctor’s office when they called and told me to go home and get into bed.
Now while it was after this that I was diagnosed with ME/CFS and truly became very ill, I feel that my pushing myself and continuing to ignore the warning signs my body was giving me, my body shut down because of what I was doing and because I was overdoing it. YES – I BELIEVE I ALREADY HAD CFS, BUT I KEPT PUSHING AND PUSHING.
For heaven’s sakes, I PASSED OUT IN THE SHOWER ONE MORNING, WOKE UP WITH MY HEAD BACK IN THE SHOWER AND THE REST OF MY BODY LYING OUT OF THE SHOWER, NOT KNOWING WHAT IN THE WORLD HAPPENED, I GOT UP, FINISHED SHOWERING AND WENT INTO WORK!
Everyone was seeing my body shut down: my parents were trying to tell me, my sister was trying to tell me, my doctors were trying to tell me, my husband was trying to tell me, even my boss was trying to tell me. But I refused to listen to anyone and I kept pushing myself because I had something to prove, I wanted to get to the top and I couldn’t do that if I slowed down. It sounds so stupid now & I’m ashamed as I write it but that is how it was in my case. I had a lot of issues in my life and from my past that I had never dealt with and if I was working, I didn’t have to think about them. Becoming a workaholic kept me from having to think and from having to feel. I’m sure I’m not the only person with CFS & FM who has done this.
I pushed myself too hard and I am now paying the piper. I DON’T BLAME MYSELF FOR BEING SICK. BUT I DO BLAME MYSELF FOR THE SEVERITY OF MY ILLNESSES. I FULLY BELIEVE IT WAS MY LACK OF REST AND THE CONSTANT PUSHING AND WORKING PAST WHAT MY BODY COULD PHYSICALLY DO THAT LED MY BODY TO SHUT DOWN.
I know it is not like that for a lot of people and as Monica says she can recall exactly when she became sick. I can also. But doesn’t it seem odd that for years we have read about and have had this common type A personality thing in common among us with CFS & Fibro? Why wouldn’t that contribute to some of our problems?
When I write posts like The I’ll Sleep When I’m Dead Theory, or when I talk about how pushing yourself can lead to making your illness worse or causing your body to shut down, it is truly coming from a place of love. I know that I am not the only person out there who has done this – been sick all of their lives to some degree only to push their bodies full force and end up shutting down completely.
It’s a warning that as ME/CFS & Fibromyalgia patients, our bodies can’t handle it. I don’t even believe that it is healthy for someone who isn’t sick and that eventually it catches up to them, if not physically in some other area of their life.
So my questions to you are: Did you push yourself too hard in your life before you became really sick and did you continue pushing yourself even once you knew you needed to slow down like I did?
Hi Sandy,
Thank you for elaborating. I don’t think we really disagree about anything. I certainly did not express the entirety of my feelings in that response, but I’m glad it’s a catalyst for discussion.
In fact I am and became a psychiatrist (rather than a psychologist, for example), because I believe that the physical and emotional, environmental (internal and external), experiential as well as the genetic “hand we are dealt” are all inextricably related.
So, of course I completely understand what you are saying. I probably was responding somewhat defensively and certainly simplistically to the notion that we would not be sick “if only”.
Perhaps, your point even hit a nerve with me, because I don’t consider myself a “typical Type A” personality. I used to always have so much fun! But, as someone who got diagnosed with CFS in 1983, oh yeah, got hit by a car as a pedestrian in 1984, went on to finish a psych residency,(while going out dancing on Monday nights and on the week-ends, very un-type A, right?) 2 year child and family fellowship, got married, had a child, went into practice (with a fainting experience thrown in there as well…BUT it was secondary to nearly hemmhoraging to death, so that doesn’t count on the “CFS” scale right?;)
I got to travel to Europe with my husband (got sick as a dog the day we arrived), went to India and Japan and Thailand with my mother. My mom said, “when will you ever have a chance that you won’t be working again?” It was a business trip for her. I did fall asleep on piles of oriental carpets all over the countryside of India…spiked a fever so high in Bangkok, and lovely Thai ladies helped my mom put me in ice in the hotel bathtub while I was delirious and swearing.
I made seders for 30 (always paper plates) and, hard as it may be to believe, I DID modulate my energy output. Compared to what, you may ask. Well, BEFORE.
I believe that probably individuals have different “vulnerabilities”, Achilles tendons, if you will. Some people, with “Type A” personalities, may go on to get coronary artery disease, just one example. Definitely some people are just plain resilient. Perhaps, I had those people in mind, when I was thinking of people who were as busy, BUSIER, than I was. They have 3 children, 2 dogs, work full-time, volunteer, are on committees, BAKE, go to the gym, walk or jog, do yoga. They “do lunch” a couple times a week. Chauffeur the kids around on the week-ends or after school.
Or they are single mothers who have 2 jobs, walk their kids to school, take a bus or train to work, pick them up at day-care, help them with their homework while they cook dinner, meet friends on Saturday night for”drinks or dinner or go to a club, take out their ailing parents and kids on Sunday. Or maybe take care or them at home too “Sleeping in” is till EIGHT. And THEY are not sick.
In 2000, what a surprise! my health crash and burned. I had a lot of losses and stressors in the 5 years leading up to it. I quit working. I’d be happy to share that with you as well.
More to your point. About sleep. And rest. When I got pregnant, about 4 months before my due-date, I was at my OB-GYN’s for a routine monthly exam. I remember most women complaining about the PROFOUND fatigue of the first trimester. Eh. When you’re used to being tired and it fluctuates a bit, it wasn’t so unusual. My back WAS really hurting though. But this day, as we sat to “chat”, she, being a straight-shooter, not unlike me, said, “You’re going to have to stop working”. So, I asked why and she explained that my “fluid levels were getting dangerously low”. In the jocular humorous way I have of dealing with serious issues, i said, you make me sound like a car, but, OK, I’ll wind up with my patients, give them some time for “closure”, and stood up to go.
She said, no, I mean today. I’m putting you in the hospital. We’ll stabilize your BP, you’ll be on strict bed rest till your delivery date.
Oh. And that’s what happened. ENFORCED REST. Only get up to go to the bathroom, which was about 3 feet away from our tiny bedroom. Rented a little frig, was put next to the bed. I had to lie on my left side, or sit up, reclining.
After about 2 weeks I woke up. I swallowed. Hmmm. Can this be true? I did it again. When I saw my husband that night, I said, “the most amazing thing happened. I woke up without a sore throat. The first time in 7 years.” Holy shit. I’d been seeing a CFS maven (we lived in LA at the time), Dr. Goldstein and he said pregnancy might make me better…or worse. But, I’d never gotten a chance to “run the bedrest” by him.
People asked me how could I BEAR (bare? I used to be a good speeler) being on bedrest. They’d go out of their MINDS with boredom. I wasn’t bored at all. I was a cheery plump clam. I talked on the phone. I had devoloped a yen for mashed potatoes. I made lists. I wrote letters, sent cards. Girlfriends came by. I rested a lot.
After my son was born. Not so much. I NEEDED help. I was almost 36, full-blown CFS, we could barely afford it, but I begged and borrowed so that at 9 AM, I KNEW someone was coming and I could sleep for at first one, then 2 then 3 hours.
I have figured out the sleep thing. My son is 21 now. I need 10 hours of sleep. Sometimes more. I don’t drive. We spend money first on our son, and I now know that having “help” is the next biggest priority. And “Good help Is Hard to Find” (Sometimes having help takes a lot of energy. It takes a really special person) I’d rather have that than anything. (what else do I need?)
I try to use my energy for things that are most important to me.
So, with my Drs., I have figured out a medication regimen that assures I’ll get enough sleep. My sleep SCHEDULE can be pretty weird, but I have always been a vampire, uh, night owl. I swear, THAT must be hard wired.
I think we’re all different. I wasn’t always sick. (BUT, my family has a VERY strong history for mood disorders, so don’t SHOOT me, either. I was clinically depressed at 15 and I’ll be interested to see if the prevalence is higher in such families, because I think those illnesses effect the neuroendocrine axis for sure and a lot of neurotransmitters are the same ones that control the autonomic nervous system (adrenaline,e.g. and pain modulation, eg serotonin)
So, that’s my longer answer. I think we’re on the same page. Or pages. Somebody STOP me!
Lol, I love you guys! And yes, I pushed myself way too hard. My attitude was, ‘mind over body, always’. I worked hospitality and restaurant industry for years. I thrived on it. 16 hr days, often seven days a week. Loved the rush and long term goals of building up a business. I knew I was tired, and needig a break, but I had finally just bought my own restaurant, a long-time dream. No time to rest, and kept pushing.
Then I ended up fainting in the middle of the floor. Three times in about 6 or 7 min. A trip to emerg, doctor said I was fine, and home I went for the evening. And everything was not fine from there on.
It was a huge learning experience in listening to my body. My body had discovered a push button, and if I did anything it didnt like, down I would start to go.
And even then, not likeing to over-dramatize my problems, I tried not to go on too much to the doctor. I remember one doctor asking me if I had stiffness or pain in my muscles, and I said no. I did, but it wasnt unbearable, I could still make them function, so to me, it wasnt a problem. It wasnt until a friend of mine verbally yanked me aside and said, yes, you do have a problem with stiff muscles, sore throat, etc and she thought I should check into chronic fatigue.
When I started looking it up, a light bulb went on, because it all fit. Then came the ordeal of finding a doctor who actually believed in chronic fatigue, but that is a whole other story.
Yes, I pushed myself way to hard. Even now I will get carried away and start working too hard, or letting stressful situations run me. I do notice the warning signals much sooner.
I know Sandy! I think the most difficult thing in a situation of many difficult things has been learning to say ‘no’. I constantly struggle with not taking too much on, with not over booking things. Sometimes I wonder if I will ever get it mastered!
Sandy, I have been reading through some of your articles, and can sooo relate! All your symptoms, sore throat, dizziness, stiff muscles, brain fog, inability to multitask, well, I’ve been there. I got this eleven years ago, and through trial and error found a variety of things that helped immensely. I was wondering if you have tried supplements at all. The reason I ask is because when I could get no help from the doctors and specialists, I started researching on my own. Among many things, I d;iscovered that B vitamins are absolutely essential for the nervous system, for their growth, healing, and function. I got a good brand and combined it with a couple of other things, and what a difference! It took some time, several weeks actually, before I noticed I was slowly improving. I think the most noticeable was the lessening of achy muscles, brain fog, and better sleep. Not perfect, but better.
If you know about this and tried it, I appologize for intruding, I’m sure this doesnt work for everyone. However, if you would like some insites into some of the things that helped me I would be glad to share them. I’m not expecting that you will post this, but I would love to hear from you if you have time.
Sincerely,
Cathy Hague
I definitely do think that I have pushed myself to hard in life. I just thought it was life. My mother always said “maybe you do too much.” I was always getting sick. And then finally I got fibromyalgia. I still do a lot but now I focus on health and relaxation. I am slacking so much more. Yoga has really helped a lot. I am so much more mellow. I used to go crazy when my house wasn’t clean for example and today I can say that I haven’t cleaned my house in 4 weeks!! It needs it! But I am sitting here instead:) I am a lot less tense and anxious about life thanks to yoga and meditation. My muscles don’t ache when I get tense and stressed. I can feel it coming on when I do and I have learned to go sit in quiet and either meditate and breath or nap. I never would have allowed myself to do that before. Now I need to see how I can get off 3 committees that I am on!! On those committees, I am not taking anything extra on. They must think I am a real slacker. Oh Well!!
Take care of yourself! It’s the only one you have!!
Did I make myself sick for life? It’s an excruciatingly earnest question, but I wouldn’t fixate on it: we have bigger ones to move onto.
When ME/CFS got my attention with anxiety attacks, I was already asking that on the way to the ER. I’d burned the candle in high school, had poor sleep discipline compared to my college roommates, and often cheated myself out of sleep on workdays. There had been years of stress aplenty.
Yet time off, less responsibility, psychiatric drugs, and mind-body “coping” solved nothing. “Stress does not do THAT to the immune system,” said an astute doctor who saw my T-cell counts and nearly HIV-negative AIDS. I’d also developed symptoms consistent with organophosphate poisoning or another cause of brain damage. And when I once felt naturally sleepy again for the first time in years, it was with an IV hookup during a pituitary stim’ test.
Chronic stress and poor sleep habits do no favors, but I don’t believe we’re more “type-A” than anyone else. My stress or self-abuse was nothing compared to what divorcees, widowed, alcoholics, rock stars, and POWs have endured. Something had hit my mission control dead-center, and I’ve seen little among panic attack victims or even PTSD vets that resembles the exhaustive systemic breakdown of ME/CFS, or many FM cases for that matter.
A Tahoe survivor recently wrote that a CDC official went there and told the “yuppies” living in vacation-land that they’d surely all made some poor life choices somewhere along the way. At that same time, another “flu” outbreak was going on in Lyndonville, NY, involving mostly children. As the CFS Advisory Committee meeting showed in 2008 – and likely will again this May – these kids just keep on coming. What poor life choices have they made?
The bigger questions: what’s there in our environment (alive or not), our vaccines, food, or water that’s so disabling (and deadly)? How did we start out the same, or differently, and wind up disabled with a lot of overlap?
I recently read an FM column piece much like this one: the writer became chronically ill following infection, like many of his readers, and yet FM is mostly seen as a pain disorder under rheumatology. This reflects outdated, narrow views persisting in medicine. As the NIH director wants $1B for a new basic research department, there is one NIH grant approval committee that combines CFS, FM, and other bottom-feeders like TMJ, and a good chunk of the members are psychologists and dentists.
We need a more Type-A approach if we’re to see progress beyond pallation in our shortened lifetimes. A growing few researchers see ME/CFS, FM, GWI, Lyme, MCS, and autism as neuro-immune-endocrine disorders, different points along one spectrum. By comparing, they’re starting to find differences and similarities, be it in spinal fluid proteins or genetics. They’re not getting a lot of funding: and aside from a little introspection, this is what we patients should reserve some precious energy to push for.
I know exactly when I became sick also…Winter of 1984 my first Christmas married in CA…That certainly didn’t last too long after I came down with my health problems…instead of loving me unconditionally he found a younger healthier me…
Sandy and Monica, do you mind sharing what sleep drugs you have found work for you? I have CFS with the typical FM constant brain activity/wakenings and muscle pain in bed. After trying for over a year to manage sleep in EVERY way possible without drugs, I’m ready to give in. I’m allergic/sensitive to everything and Ambien is out of the question. Any advice would be appreciated. Thanks!