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By TiredGuysWife, on June 27th, 2010
I remember very distinctly the day that we mourned the loss of my husband’s law career. T.G. had been on leave for six months, and throughout that time we had been hoping for a recovery that would allow him to return to work part-time. After much discussion, taking into account input from T.G.’s doctors, we decided to propose a reduced work schedule to his law firm: 5-10 flexible hours per week. Now at first, maybe this seems a lot to ask of his employer – but it’s worth remembering that a law firm works on a billable hour model. So for every hour that T.G. would be working, the law firm would be bringing in revenue far exceeding the costs. And he wouldn’t carry a lot of fixed costs because the firm would no longer be offering any benefits. And there was plenty of work to do that could be doled out to an extra associate.
So I guess I had gotten my hopes up. After T.G. had a conversation with the partners revealing that they would not accommodate a part time schedule less than at least 20 billable hours per week, my dream of T.G. keeping this link to his old career was lost. And honestly, I was pretty devastated. The full weight of all that he had in invested in being a securities lawyer hit me. I lay in bed that night coming to terms with all my hopes and dreams for him as a lawyer, trying to get my head around a new reality where those would not likely come to fruition (at least not yet).
I thought about our years in Chicago when T.G. was working as a paralegal, taking the LSATs, and applying to law school. I remembered his first grueling year of law school – it was hard but, amazingly, he loved it. T.G. has a certain capacity for complexity, excruciating detail, and –most importantly – the art of debate, and all these are particularly suited to the legal profession. In his second year of law school, when he was offered a summer position, the office and firm seemed like the perfect fit for his new career. I thought about the summer of intense study for the bar exam, about his first months as a ‘real’ attorney – with the expected ups and downs … days he loved his job and days he hated it.
I just never imagined in my wildest fears that after so much time and investment in a career as an attorney, all that could be taken away by an illness after a short 9 months in the profession. So I was distraught, and I had this intense feeling of sadness for something that had been lost. This moment of mourning the loss T.G.’s legal career came several months ago, and since then I’ve had quite a bit of time for reflection. I’m sure it’s evident even from this blog post that I was probably more invested in my husband’s career than the average spouse. Maybe unhelpfully invested? As he got settled into his job and had moments of doubt as to whether this was the right career, I was always the one pushing for him to remain an attorney rather than seriously thinking about other paths. One reason for this is that I worked through T.G.’s three years in law school, and if he hadn’t been in school I might have considered getting my MBA during this time. So sometimes I think of his JD as the ‘lost’ MBA I would already have, if he hadn’t gone to law school. Of course that’s not helpful.
When T.G’s law firm declined having him return to work part time, they mentioned that the other associates have been working 80-90 hour weeks for the last few months. Now T.G. is not a slacker, but frankly, he does not enjoy working over 60 hours a week and he tends to get pretty miserable and cranky when he has to – feeling like he is wasting away his life at a meaningless job, and for no good reason (other than money, which is not really a good reason to waste away your life). So lately, I’ve been thinking of this illness differently. When I get bitter and resentful that we aren’t off camping and going to baseball games, and out with friends – I remind myself that we wouldn’t be doing that regardless. Because if T.G. wasn’t sick, he’d be working. I’ve been starting to be really grateful for the time that we have together, and the new laid-back pace of life that accompanies this illness. When I don’t think about all the things we are “missing out on,” I can actually appreciate how great we have it, in so many ways.
By TiredGuy, on June 19th, 2010
CFS is an invisible illness in at least two ways. Most obviously, CFS does not usually have any physical symptoms that are readily observable. When I tell people that I am sick, they sort of have to take my word for it. Besides maybe looking a little more tired all the time, I pretty much look just the same as I did before I got sick. It is only by spending a few days with me that you would realize the drastic impact that CFS has had on my life. CFS becomes visible slowly, to people who take the time and effort to see its impact. Even for them understanding our illness involves an act of faith, and faith does not come easily.
But more than simply being invisible to most people, CFS also tries to make us invisible. And not in the literal way that would be really cool. People with Chronic Fatigue Syndrome slip away from the rest of the world, either slowly or all at once. We are largely confined to our homes, or even our beds, for most of the day. Many of us do not have the energy to continue working, at least not full time. We have trouble with the energy required to maintain relationships, even with those who are closest to us. In many ways, we disappear from the world of our peers. At first, the invisibility of the illness itself was more difficult for me; now I struggle to convince myself that I am not slowly slipping away from the exciting life that everyone else is living.
 Doopity Do I’ve sometimes wondered what it would be like if CFS had all the symptoms it currently has, except it also turned all your skin bright orange. Besides the added stigma of looking like an Oompa Loompa, for the most part things wouldn’t be any worse for the CFS sufferer. However, now we would no longer be invisible to the rest of the world. We wouldn’t have to deal with the people who tell us, either explicitly or implicitly, that CFS is a mental disease.
I do think that much more research would be done on CFS if it had some type of clearly visible physical manifestation. It would be hard to ignore the outbreaks that have occurred in several areas if half the town suddenly looked like they should be in a Willy Wonka movie. It would be hard to dismiss your co-worker as lazy if they came to work one day looking like that.
However, until there is a cure or proven treatment, no amount of awareness is going to stop CFS from trying to make you invisible. One great way to fight back against this invisibility is the internet. I often wonder what I would have done if got CFS before I had access to an entire second world of information and entertainment. When I want to shop for a new TV, I don’t have to spend days driving around to different stores. That’s an amount of energy I can’t justify spending. But I can figure out everything I need to know about televisions and find the best price without leaving my couch, and a few days later it shows up at my door with a delivery man to help set it up.
When I get bored but don’t have much energy, I can find radio stations or music on the internet. I can play interactive video games that keep my mind fresh and give me a sense of accomplishment by accomplishing a difficult task with other people. I can keep track of friends on Facebook and still feel somewhat involved in their lives by commenting on their posts or making inflammatory political statements on my own page and waiting for them to respond. It’s not a substitute for “real” human interaction, but when it’s all you have, it’s pretty amazing, and I’m thankful that I can still be connected to other people without leaving my couch. Even introverts like myself don’t want to become invisible.
By TiredGuy, on June 2nd, 2010
My third, and sort-of current, doctor is a recent medical school graduate who is a resident at our local university teaching hospital. The hospital is one of the best in the country, and she has very experienced supervising physicians, so we are pretty comfortable seeing an inexperienced doctor. In many ways, we are seeing her to get referrals to the other physicians in the hospital network, many of whom have been extremely helpful. However, there are some pluses and minuses to seeing a brand new doctor.
On our first visit, my wife and I were very excited, because she took plenty of time to talk to me about all my symptoms, history, and so on. We must have met with her for at least an hour at our first visit, and in consultation with the attending physician, she came up with a large lists of blood tests that she wanted to do. By this time, I think my wife and I both knew that the blood tests would probably be unhelpful, but we were excited about her attitude. Her approach seemed to be very positive, and she was committed to figuring out what was wrong and getting to the bottom of the problem. Being a pretty new lawyer myself, I probably should have recognized her over-enthuasism.
Of course, after a couple months of tests that came back completely normal, and after sending me off to various specialists who had varying levels of cluelessness about what to do with me, the new doctor had become a bit more pessimistic. Like my first doctor, she remains stubbornly unwilling to admit that Chronic Fatigue Syndrome is a real illness, even if she dances around actually stating this viewpoint.
In her terminology, CFS is a “wastebasket diagnosis.” She loves to throw this phrase out there whenever she talks to us. “CFS is really sort of a wastebasket diagnosis” she endlessly repeats, in a tone that says the issue has been decided and should not be questioned. She never really explains what she means by this term, as though it is self-explanatory, but it’s really not. Since she won’t define it, here’s what wikipedia says:
A trashcan diagnosis or wastebasket diagnosis is a vague or fake medical or psychiatric diagnosis that is given to the patient or to the medical records department for essentially non-medical reasons.[1] It may be given when there’s obviously something wrong but the doctor doesn’t know what it is, when the doctor wants to reassure an anxious patient about the doctor’s belief in the existence of the reported symptoms, when the patient is pressuring the doctor for a label, or when the doctor wants to facilitate bureaucratic approval of treatment.
While she is always very respectful and understanding while talking to us, there is a palpable sense of suspicion in her voice whenever we bring up CFS, as though we shouldn’t use that label for whatever is wrong with me. Despite the fact that I fit almost every criteria or checklist for CFS that you could come up with. Despite the clear guidance from the CDC that her continued skepticism is unhelpful. Here’s what the CDC says about common obstacles to clinical care for CFS patients:
- Uncertainty about whether CFS is real. After more than 3,000 research studies, there is now abundant scientific evidence that CFS is a real physiological illness. It is not a form of depression or hypochondriasis. A number of biologic abnormalities have been identified in people with CFS, but how they contribute to the illness is still unclear.
- Uncertainty about how to diagnose CFS. Although there is no laboratory test or marker to identify CFS, there is an international case definition for chronic fatigue syndrome that provides a reliable diagnostic algorithm.
- Uncertainty or hesitancy about making a diagnosis that may contribute to the illness. Validating a patient’s illness experience may have therapeutic value and reduce the cycle of frustration between patients and their health care team. There is also evidence to suggest that the longer a person is ill before a diagnosis, the more complicated the course of the illness appears to be, making early detection and treatment of CFS of utmost importance.
- Uncertainty about how to treat CFS. Although managing CFS can be challenging, there are a number of therapeutic strategies that health professionals can use to tailor a multidimensional treatment program.
I would say all of these points apply to our doctor, and it’s frustrating to be so much more informed than the professional who is supposed to be giving you guidance and treatment. Instead, my problem fits into the “wastebasket diagnosis” part of her brain, which allows her to believe that little can or needs to be done when treating me, when there is so much more information out there that could guide her treatment and understanding of my disease.
At our last visit, I was reminded how little she really understands what is going on with me, even though she seems to be listening when I explain my condition. I’ve made it pretty clear that I have very little energy, and am more or less stuck to the couch. Anything more than a short walk around the block is too much physical activity.
So, I was suprised when near the end of our appointment she asked what we were going to do that weekend. I always love when people ask me what I’m going to do this weekend, and I say “oh, pretty much nothing.” Our doctor recommened that we go visit the local tulip festival. The festival takes place over acres of tulip farms, which would require lots of walking around in the hot sun looking at fields of tulips. Technically, we probably could just drive around and look at the tulips from the car, but her suggestion seemed comedic given that we had just spent 30 minutes talking about how little energy I had. Just one more disconnect between the patient and the doctor, which is getting way too familiar.
By TiredGuy, on May 29th, 2010
Men with CFS face some unique challenges. CFS is often perceived as a women’s disease. It also may in fact impact more women than men. So, right off the bat it feels a little emasculating to have a disease that is more common in women. Many men with more mild CFS probably push through their symptoms without seeking help, because it is less acceptable in our culture for men to be weak. It’s not always easy to keep my self-image intact as a guy with CFS.
Sometimes I get really sick of being sick, and it’s usually because I can no longer do the things that guys are supposed to be able to do. Not to generalize too much, since not every guy is the same, but I’m pretty traditional in my gender roles. When something heavy needs lifting or something dirty needs cleaning, I usually feel like it’s my job. A couple of things in the past few weeks have really reminded me that I’m sick, and it sucks.
We want to get a new couch for our upstairs living room, and move the old couch downstairs. Of course, I can’t really be involved in this process at all. When we wanted to go look at a couch we found on Craigslist, we knew we’d have to rely on friends and family to help get the couch moved, because I just couldn’t help. We decided to pass on the Craigslist couch, and my wife is at Ikea today, probably picking out a new couch. I couldn’t go, because I’m too tired to even walk around the store, much less help her load a couch into the van. So, someone at Ikea is going to have to help her, and that’s one more blow to my self esteem. Men might have many faults, but even the worst of us is pretty good at moving furniture.
We ordered some screens for our windows, since the hot weather is rapidly approaching. I had to convince my wife to let me measure the windows, even though it took very little energy. When the screens arrived, opening the box took too much work, so I had to sit and watch my wife do it. I managed to convince her that installing the screens would be pretty simple, and it was. But once we put one up, we realized we should clean the windows first, and that’s too strenuous for me. So, the screens sit downstairs until my wife has time to clean the windows.
Now, before I got sick I was plenty lazy. I would put off projects for months just like many other guys. I wasn’t exaclty a guy’s guy. I have only minimal skill with tools and made my living sitting at a desk using my brain. Now that I can’t do anything, however, I want nothing more than to spend my Saturday afternoon cleaning the windows and getting all the screens up. I’d like to be able to mow my own yard and enjoy the satisfaction of a job well done. I’d like to clean out the garage and get it organized. I can’t do any of this, and it sucks.
A good friend sent me an email the other day, asking if I wanted to come over and help him jackhammer out an old concrete driveway. He knew I was sick, but he didn’t have any idea how limited I am physically, because when I see him it’s for only an hour or two at a time, and I’m always sitting down. And he doesn’t see the days spent on the couch recovering from that minimal amount of exertion. So, he had no idea that I couldn’t take a turn on the jackhammer and help him out. Just one more thing that I can’t do.
As you can tell, lately I’ve been a bit focused on all the things that CFS has taken away from me. It’s very hard to avoid these thoughts, as I have daily reminders of the things I can’t do. In fact, I need to remind myself of my own limitations, as that’s the best way to avoid over-exerting myself and making things worse. So, I’m in my own head constantly reminding myself of my limits. Don’t bend over too much to pet the dog. Make sure to fit a place to sit right away when we go to a friend’s house. Let your wife put together this new piece of furniture, even though it is something you used to enjoy doing. It gets old. Sometimes you get the urge to just say screw it, I’m getting this done, even if it makes me worse.
Men tend to relate to each other by getting things done. We tend not to get together to talk about our feelings. Instead, we move a couch together, we break up an old driveway together, we go hiking or golfing or running together. We relate to each other while we are engaged in some other activity. It’s a roundabout way of expressing ourselves, but that’s just how most men are. I try to find new ways to relate, but not being able to use my body is a very real loss that I’m still working to accept.
By TiredGuy, on May 16th, 2010
About six months into my illness, I started taking an antidepressant because, well I don’t remember why exactly but I think the theory was “maybe this will help.” I initially tried Prozac, but I found that it made me even foggier and out of it than I already was. My already poor attention span and ability to concentrate got noticeably worse. So, I switched over to Zoloft.
Zoloft seemed fine for the most part. I started on a pretty low dose, didn’t really notice any effects (positive or negative), and eventually ramped up to an average size dose. While I was on Zoloft, I would say that I felt a tiny bit less edgy or irritable. I don’t think my overall mood really changed, but things were just a bit dulled. Zoloft didn’t seem to affect my fatigue, concentration, or post-exertional malaise. Eventually, I stopped taking Zoloft, because it was not addressing any of my real symptoms and seemed unnecessary. I’m not a big fan of taking drugs that I don’t really need, for reasons that may become clear shortly (and when I tell you about the completely un-advertised Zoloft withrawals).
While I was taking Zoloft, I also talked to my primary care doctor about my sleep problems, so I was referred to a sleep clinic. The nurse practitioner there had lots of thoughts on how I should combat my insomnia, and one of them was trying Ambien to help me sleep.
I’m willing to try most things once. Not anything, but most things. I’ve always thought that people who said they would “try anything once” had a severe lack of imagination. Do you see what I mean? I wouldn’t cut off my own arm “just once” to see how it felt. I wouldn’t eat rat poison on purpose. It is certainly not true that I would try anything once.
I guess by “anything” people really mean anything reasonable, but then the saying becomes kind of circular. Something like: “I am willing to try anything once, so long as it is something I’m willing to try.” There’s your deep thought for the day. In any case, in an effort to get better I will try things that have a reasonable chance of success and a minimal chance of really screwing me up.
The first night I took 5mg of Ambien, which is a fairly small dose. I didn’t really notice anything. It wasn’t any easier to fall asleep or stay asleep, and it wasn’t any harder either. There were no noticeable side effects, so the next night we decided to have me try 10mg, which of course had all been approved with the prescription.
By this time, we had already adjusted to the fact that my wife would need to go to bed earlier than I did, because I just was not sleepy at 10pm, and would lie awake for hours, staring at the ceiling. When I stayed up a little bit later, I seemed to fall asleep faster and sleep more soundly. So, after taking the Ambien I sat out in the living and read a book, while my wife went to bed.
 Things seemed pretty normal for about half an hour, but then I started to feel really strange. I looked up from my book and the colorful patterns on kitchen tablecloth seemed to be moving. Instantly, some part of my brain knew that it wasn’t real. I wasn’t scared or worried that I was going crazy, but at the same time, it really looked like the patterns and colors on the tablecloth were rapidly moving around in a way that made no sense. This was not a very enjoyable experience.
At this point, my memory gets really hazy about what happened next, but I know that I got up and went into the bedroom, and explained to my wife that I thought I was having hallucinations. I also started to hiccup uncontrollably. At the same time, the intended effects of the Ambien were kicking in and I was starting to get really sleepy. So, I sort of lay there in a half-conscious state, hiccuping endlessly and drifting in and out of hallucinations.
At some point, I must have just fallen asleep. I woke up the next day not sure whether the previous night had happened. I asked my wife if I had been hallucinating, which she confirmed. She reminded me about the hiccups, which I hadn’t even remembered.
We later learned that Ambien and Zoloft had a “moderate” drug interaction, and taking the two drugs at the same time may have been the cause of my side effects. Or, it may have just been the Ambien itself, since some people abuse the drug to reach the trippy state that I had just experienced. I can’t imagine ever wanting to experience disorienting hallucinations, and wake up not remembering what I had done the night before, but apparently some people find that enjoyable. Not me, so no more Ambien.
By TiredGuysWife, on May 15th, 2010
Sorry friends – we haven’t really been writing lately, as you can see. T.G. has a good excuse in that he’s been feeling a bit tired (extra tired that is) and can’t seem to get his focus assembled for writing the posts he has in mind.
I have no excuse. I am tired right now, but only because I was just gardening out in the hot sun. And I spent the morning cooking brunch for some friends. So … the good kind of tired, not the CFS kind of tired! I’ll try to get back into blogging soon … I think the weather is supposed to turn cloudy again so I’ll be back inside looking for something to do.
By TiredGuysWife, on April 29th, 2010
From the Social Security Administration’s website:
“Studies show that a 20-year-old worker has a 3-in-10 chance of becoming disabled before reaching retirement age.”
May I say that I love that the US government uses the phrase ‘studies show’ with absolutely no back-up documentation? T.G. frequently makes fun of me for my frequent reference to the ubiquitous and always reliable source “Studies” – so it is nice to know I am in good company!
3 in 10 workers. When I set out on my career at the age of 22 I had absolutely no idea how high the risk of disability was. When I signed the LTD form for my first job, I felt as though I had a one in a million chance of getting disabled. After all, I’m a very timid downhill skier that steers completely clear of the trees. I wear my helmet when I bike or rollerblade – maybe once a year if that. And isn’t that how people become disabled? In tragic accidents while engaging in adventurous and risky behavior? I actually thought I had a greater chance of using my life insurance than my disability insurance! Sigh. I was so young and ignorant.
 As I have attended the weddings of my friends over the last 5 years or so, I have always been aware that roughly 50% of marriages end in divorce. Even if you adjust for income, education, religion, etc – I knew that of all the happy weddings I attend, not all would work out. We all justify to ourselves why we know it won’t be our own marriage, and yet we know we can’t all be right. But at least we are painfully aware of the odds. Even now as I am approaching 30, I know several people who have gone through a divorce. Crazy, yes. But we were warned.
I just wish that when we set out on our careers, the reality that we had a 30% chance of being disabled was made more clear. Maybe I would have been more prepared? Maybe other people would be more sympathetic if they knew how common it is? Now my math maybe be a little (or a lot) rusty but doesn’t that mean that in my marriage, we had a 51% chance that one of us would get disabled before retirement? [I did 30% + 30% - (30%*30%) anyone want to tell me what I did wrong?] So healthy people, listen up. Odds are – you or your spouse will get disabled before retirement. Maybe not permanently, in fact it is more likely it won’t be, but this trial that we are facing is something that you will likely face too. And if not you, your neighbor. Or your brother or sister.
Since T.G. and I are going through this now, while we are relatively young, I thought I would pass along my advice to those of you who are young and healthy – in the event that I have sufficiently convinced you that you should be concerned about disability as a possible future outcome.
1) Please have LTD insurance. If you get sick or injured, and you are unable to work, you still need to be able to support yourself and your family. It’s a bit expensive and hopefully you get it as a benefit at your work, but if not I would seriously recommend getting individual coverage.
2) If you have LTD insurance at work: make sure you are paying taxes on the premiums!! It is a small amount of tax, but allows your benefits to be tax free which is huge. Most work LTD plans only reimburse 60% (or less) of your pre-disability income – but with the tax break this almost gets you back to where you started.
 3) Always have 9 months in accessible cash savings. This is good common sense for a wide variety of reasons – if you lose your job in our current economy it may take longer than you think it find another. As T.G. and I have been waiting on various insurance claims and living without income, I have become very thankful that both of us were born obsessive savers. It is nice to have a bit of time to weather the storm before everything completely falls apart. Plus, Suze Orman says to do it, so you really should.
I guess that’s all. Oh wait, one more thing – get out there and live your life!! Walk, run, travel, play, laugh, dance – because you don’t know how long you will have the opportunity to do these things.
By TiredGuy, on April 26th, 2010
As you may have noticed, the image at the top of my blog features a small section of chain link fence, with a hazy, out of focus background. It’s not the most cheerful image, of course, but for me it captures a few realities of living with a chronic illness. Specifically, the sense of behind held back by a force beyond my control, with only a hazy vision of what lies beyond.
In some ways, I imagine that it’s a little bit like living in prison. While certainly more pleasant in most respects (I can see my wife and dog whenever I want, I’m at home, I have family, friends, good food, and so on), a chronic illness makes you a prisoner of your own body.
I am currently reading Dietrich Bonhoeffer’s Letters and Papers from Prison. It’s a bit intense and hard to plow through at times, but it is such a great story. Bonhoeffer was a German pastor who was imprisoned by his own country during World War II. Through letters with his family and friends, Bonhoeffer was able to communicate many of his thoughts during his time in prison. We are lucky to have access to this personal correspondence.
Reading this story now, I can’t help but draw parallels to my own existence. I particularly find Bonhoeffer’s attitude towards living in prison very helpful. He remains optimistic about his release, without unnecessarily getting his hopes up. Here’s a sample of his outlook:
“The great thing is to stick to what one has and can still do — there is still plenty left — and not to be dominated by the thought of what one cannot do, and by feelings of resentment and discontent.” Dietrich Bonhoeffer, Letters and Papers from Prison
A chain link fence is interesting, because depending on your perspective, it can either be an unsightly, unavoidable barrier that dims our spirit of optimism, or it can be an almost invisible border that perfectly frames the image beyond.
 The first perspective is probably more common. We see fences as a barrier to something else. Presumably, something better. It is our natural instinct to wonder what is on the other side of the fence.
We are hopelessly optimistic. We can’t help but notice that things as they exist right now are far from perfect. Yet we have a vision that things can be better. Perhaps part of that vision is a reality, just on the other side of that fence.
A chain link fence offends us. Just ask my wife. The house across the street from us was recently purchased after being on the market for many months, and she can’t wait for the old chain link fence to come down. A nice wood fence like ours would just fit in so much better with the neighborhood aesthetic.
That chain link fence does look cheap. But more than that, it lets us see the unkempt grass and broken concrete in the yard beyond. With a nice wooden fence, we could imagine that the landscape was perfectly maintained and quite lovely. With the chain link fence, we can see the reality of the situation, and we are disabused of the notion that the grass is always greener on the other side. There is nothing aspirational about the view through the chain link fence.
 However, there is a another way of looking at fences, both real and metaphorical. The fence is just there. We didn’t put it there, and in all likelihood, it is not our place to remove it.
What we can control, however, is our perspective. We can choose to obsess about the fence, or we can notice how nicely it frames the flower on the other side.
That’s how I prefer to think of my own personal fence, this illness that I am living with. It is just there. But instead of fixating on the fence, focusing on how it limits me and holds me back, I can continue living my life while accepting the reality of the fence. It cannot be ignored, but it can become a part of my life, rather than something that holds me back from living.
By TiredGuysWife, on April 20th, 2010
“  We are still putting together the puzzle of CFS (Editor's Note: I think it's going to be a leaf!) I have written previously about my challenges in articulating what CFS is, and the consequences of my poor descriptions. I think the challenge is the complexity and ambiguity of what is known today about CFS. While we have many pieces of a puzzle, the full picture is still unclear. There are clues, but no answers.
T.G. and I like to joke that we know more about CFS than any of our doctors, but it’s absolutely true. We keep up with the news and research pretty regularly, while our doctors are working from whatever information has been proven, tested, and set in stone by the medical establishment. So I tend to find our doctors’ understanding of CFS is completely superficial, and at least 5-10 years behind the times. But … at least they aren’t stuck in the 80s, insisting it is all in T.G.’s head, right? What a nightmare THAT would be.
I do find the research about CFS fascinating, and I tend to think there is some momentum right now which hopefully will lead to a more complete understanding of CFS soon. I hope that if T.G. is not lucky enough to recover on his own, that within 5 years there will be better treatments that have been thoroughly tested and FDA-approved.
This article by Dr. Komoroff at Harvard Medical School highlights 10 interesting findings – clues- about the biology of CFS. I’ve highlighted a few below that ring true for me, but I highly recommend reading the whole article.
2. There is a state of chronic, low-grade immune upregulation in CFS. There is evidence of activated T cells, stimulation of genes reflecting immune activation, and increased levels of immune system chemicals called cytokines, which act as chemical messengers between cells.
3. There is substantial evidence of poorly functioning natural killer (NK) cells, white blood cells that are important in fighting viral infections. Studies differ as to whether there are increased numbers of NK cells in CFS patients.
A theory about a weakened or at least over-taxed immune system makes perfect sense to me based on T.G.’s experience. He was never one to get sick often, and when he did, he tended to bounce back fairly quickly. I, on the other hand, with my frequent travel and tendency to touch my face a lot, am always dragging viruses of one sort or another into the house.
Since T.G. has been sick with CFS, he has had distinct cold/flu symptoms at least three times (not counting the initial course of CFS which resembled the seasonal flu). I go out into the world, catch a cold, and then pass it along to T.G. despite my best efforts. Last time I was sick, I stayed in my own quarantined bed and bathroom and still somehow T.G. managed to catch it. But while I recovered in a few days, he managed to get a sore throat that lingered on for 6 weeks. And as you might expect, when his body is fighting a little bug on top of everything , it resets the cycle of feeling extra-awful and it takes him a while to get back to zero. So … I think something is going on with his immune system one way or another.
(An Aside: you find a new language to talk about how you feel when you have CFS. If I ask T.G. how he feels, he says ‘tired.’ So I have to pry – extra tired? Medium extra tired? Or regular tired? This seems to give me a better barometer for how he is feeling on a particular day).
4. Abnormalities in the white matter of the brain have been found in CFS patients using magnetic resonance imaging (MRI) scans. Typically, these are small (fraction of an inch) areas just below the cerebral cortex, the outermost area of the brain hemispheres.
7. Cognitive impairment is common in CFS patients. The most frequently documented cognitive abnormalities are difficulty with information processing efficiency, memory, and/or attention.
Both of these are true for T.G. When T.G. got an MRI, we were actually secretly hoping he might have MS – not because having MS is a good thing, but because at least we would know what “IT” was and what to do about it. T.G. does, in fact, have two white spots on his brain – in an area which I’m told is not specific to any particular brain function. That is, based on its location it should not have a particular effect specifically on his memory, or speech, or whatever. That said, the neurologist does not seem to have any particular hypotheses regarding what effect, if any, the white spots could be having on T.G.’s cognition.
This is why he underwent neuropsychological testing. Two days of games, puzzles, and quizzes which I’m sure T.G. will tell you about in more detail at some point. We were worried that the testing would be inconclusive, and the doctors would tell us that whatever T.G. perceives in terms of lessened cognitive abilities is not real or cannot be seen on the tests.
But rather, the results almost perfectly mirrored T.G.’s “subjective assessment.” See doctors – sometimes the patient does have a clue what he is talking about!! The tests basically showed that T.G. has a brilliant and speedy mind, with a few noticeable problems. In most tests he would score well into the 90th percentile. But, on a handful of tests measuring information processing speed, memory, or attention, he performed much worse than you’d expect for his peer group and pre-illness abilities. It wasn’t clear if this is because he was getting tired on some tests, but there were clearly areas where T.G. could not perform at his normal high level despite his best effort.
10. There is a growing body of evidence of more frequent latent active infection with various herpesviruses and enteroviruses in CFS patients. The herpesviruses include Epstein Barr virus, HHV-6 and cytomegalovirus, but not the herpesviruses that cause cold sores and genital sores. Other infectious agents also can trigger CFS, including the bacterium that causes Lyme disease, giardia duodenalis, Ross River virus, Q fever, West Nile virus and human parvovirus B19.
To me, the idea of a virus or set of viruses behind CFS is compelling. The main reason is that T.G.’s illness began with what I would describe as a “swift viral onset.” That is to say, one day he got the flu. If you’ve ever had the flu, you know that (unlike a cold which tends to give a couple of days’ warning) one day you are feeling fine, and the next day you wake up and feel like you got hit by a bus. And you don’t feel like doing anything all day but lie in bed and complain about how rotten you feel. Maybe that’s just me? Well, that’s exactly what happened to T.G., except that after all that lying in bed and feeling rotten, he didn’t feel better. So he went back to work. And then he felt rotten again.
 Sleeping the mono away When I had mono in college, I had a theory that the cure was to sleep, sleep, sleep, until it went away. I would just lie in bed, falling in and out of sleep, not even feeling like going down to eat dinner. On the bright side, I lost a lot of weight!! But sometimes I would get completely stir crazy and just take off running down the street. Because you aren’t supposed to run when you have mono (something about your spleen rupturing?) and that made me nuts.
But I digress. My point is, we can all relate to what it feels like to get hit by a virus – whether for a day, a week, or a couple of months. And T.G.’s illness has felt viral in many ways, right from the onset.
If you live in a cave — ok, or if you don’t read the NYTimes or follow CFS obsessively, both of which I do – you may not have heard about the new research about XMRV (a retro-virus, like HIV) and the role it may play in CFS. You should check it out because it’s fascinating. It’s too early to draw any conclusions, but I’m eagerly watching to see where it all goes. Somehow XMRV as the “puppet master” that fits all the pieces of the puzzle together makes a lot of sense to me. I can’t wait until the day in 20 or 30 or 50 years when we can sit around with our grandchildren and talk about the days when we didn’t know what caused CFS … and they can be amazed and think we sure must be old!
[Editor's Note: are video games going to get so boring in the future that our grandchildren will be fascinated by medical stories?  ]
By TiredGuy, on April 18th, 2010
My first doctor was a busy general practitioner who proved to have little time or inclination to understand Chronic Fatigue Syndrome. In fact, while in her office, she told me that she would be very hesitant to ever diagnose anyone with CFS. In her words, “some people with CFS just don’t do anything, but there was an Olympic soccer player with CFS.”
Sometimes doctors say really dumb things. I guess the implied message here is that whatever CFS is, it can’t be all that bad. Some people are just so lazy or messed up in the head that CFS makes them bedridden, while others who are more well-adjusted can play sports at an Olympic level? At the time, I was already realizing this was a silly thing to say. Now, I hardly know where to start. There are two big things wrong with this statement: paternalism and ignorance.
First, there was recently a great New York Times article about doctors’ proclivity for underestimating the severity of their patients’ symptoms. The basic premise was that patients probably understand their symptoms better than doctors do, or at least have a unique and valuable perspective to offer. You would think this is obvious. Instead, doctors and nurses “systematically downgrade the severity of patients’ symptoms” and sometimes do not report significant side effects in drug trials. Although there are several factors at work here, the most frustrating for me is pretty simple: paternalism.
“There is a sensibility among some old-school clinicians that they have a better sense of their patients’ experience than patients do themselves,” Dr. Basch said. “But doctors and nurses bring their own biases to the evaluation. They might say, ‘Mrs. Smith always exaggerates her fatigue — she says 9, but I rate it a 6.’”
The idea that “some people with CFS just don’t do anything,” with the implication being that they could probably do more if they tried hard enough, assumes that the doctor understands the symptoms better than the patient. In an area like CFS where most doctors have very little clinical experience with the illness, such a paternalistic view is hardly warranted.
Of course, this also raises the interesting question of why you would categorically refuse to diagnose an illness just because it affects some people more severely than others?
I guess by my first doctor’s logic, you either have an illness or you don’t. There is no such thing as a mild, moderate, or severe case of CFS, there is just CFS. If someone can have Chronic Fatigue Syndrome and play soccer at an Olympic level, then the rest of us should be able to do so as well. Of course, that is a ridiculous standard that she would not apply to other illnesses.
Amazingly, it seems that my doctor had taken the completely wrong message from the Michelle Akers story. Akers was the best American soccer player of her generation. She developed CFS sometime around 1991, at the height of her career. She battled with the illness for the next three years before, in her words:
“I hit rock bottom. I couldn’t manage to get out of bed and brush my teeth, nevertheless run and play soccer. Migraines racked my head while I sweated through three tee-shirts a night. Finally, I was diagnosed with Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) . . . . I was so sick I couldn’t take a five-minute walk without needing two days on the couch to recover.”
Well, I see a lot more of myself in that description than I do in the image of a world class soccer player running up and down the field for 90 minutes. Of course, even that vision has to be modified by the reality of what Michelle Akers was suffering behind the scenes. At the 1999 World Cup, the U.S. Women’s team beat China after overtime and a dramatic penalty kick shoot out. Where was Michelle?
“When the U.S. team was playing overtime and shooting penalty kicks I was in the training room, completely undone. Due to the effects of Chronic Fatigue Syndrome, I was flat out and practically incoherent. When I did gain my senses and learn that Brandi Chastain had put away the winner, I had the trainers take my IVs out and found myself hobbling out to the field to join my team.”
Michelle Akers had gotten to this point only after years of struggling with CFS and learning how to manage her symptoms. Even when she could still play soccer, it was with severe limitations, and she was no longer the same player she used to be. She often could not play a whole game, and spent all of her time between games and practices resting. Yet, my doctor appeared to only notice that someone with CFS could play soccer, and therefore it couldn’t be all that bad.
There were a lot of reasons that we decided I needed a new primary care doctor, but paternalism and ignorance are kind of a big deal for me. I don’t want to fight to have my symptoms accepted for what they are. And I just don’t have the energy to correct such ignorance. We still haven’t found a great primary care physician that really understands CFS, but we have found a team of doctors that are doing their best to understand what’s happening and treat me as best they can.
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