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I'm chronically fatigued, and chronically nonsensical : )

Wednesday, August 12, 2009

I'll start at the beginning

[To warn you, this is a very long post, though, personally, I do consider it a worthwhile read. I had to tell you this story first, to give context to anything else I might choose to say in the future.]

I've had a very challenging year.

Last September, I was diagnosed with Chronic Fatigue Syndrome (CFS or CFIDS-Chronic Fatigue Immune Dysfunction Syndrome). I don't think I had ever heard of CFS before last September, but I am definitely familiar with it now. Common symptoms of CFS include:

* Unexplained extreme fatigue
* Decreased ability to perform work or educational, social and personal activities due to fatigue
* Chronic or frequent sore throat
* Muscle pain

* Difficulty with concentration or short term memory
* Headaches unlike those previously experienced
* Joint pain unrelated to injury or trauma
* Unrefreshed sleep
* Tender lymph nodes
* Chronic low-grade fever


Two summers ago, I started working in a research lab on campus and last summer I was supposed to work full-time in order to fulfill the requirements for a grant I had received. A few weeks into the summer, I stopped being able to go in to the lab. I was dizzy, weak, had migraines, felt foggy, and was extremely tired no matter how much sleep I got. I was only capable of spending the day sitting on a couch or lying in my bed. I went to the doctor I was seeing at the time, even though I was already in the process of switching doctors, and he told me my blood pressure was really low so drink a lot of water and gatorade, and take Ibuprofen for the headaches. He seemed entirely unconcerned about the fatigue and brain fog, and I was not satisfied. I didn't have an appointment scheduled with my new doctor until a few months later so I emailed her and told her what was going on. She emailed back that I shouldn't have any flour, sugar or caffeine until I saw her, which was still a wait of a couple months. So, what should have been a summer of full-time work, turned into a summer of napping and sluggishness. The diet did help, the migraines got better, but I still couldn't do much. [And, side note, have you ever tried not to eat ANY sugar or flour? And caffeine is in more than you think it is. I made a very serious effort at this diet, but it was very difficult.] When I finally saw my new doctor, she told me that she suspected Addison's Disease, adrenal exhaustion condition, because of my low blood pressure. To check this, she needed to do an adrenal function test, which required me to spit in tubes 3 times on a particular day and mail them to some lab, and it would take about a month to get results back. She also did a series of blood tests to check thyroid function, Lyme disease, Epstein-Barr (mono), and several viral and bacterial infections. I waited, with no improvement, doing all of the research I could on Addison's disease (which was not very reassuring--Addison's, though treatable [not curable] is a serious and potentially life threatening condition and those with it must wear MedID bracelets at all times). She also gave me even further restrictions on my diet based on my blood type, citing that much of what I was eating was likely making things worse (namely corn). [But this new diet? PHEW! I seriously could eat almost nothing without very considerable effort. So not worth it.]

I finally got to see my doctor after she got all of my test results back some time in September. There are baskets of books and magazines in the appointment rooms of my doctor's office, and when I went in there was a book on Addison's on top on the basket, and I thought, "How appropriate!" Wrong. My doctor came in and told me that no, indeed, not only were my adrenal glands working, they were working at times too much and oddly. I did not have Addison's, but due to my months of fatigue and the fact that I tested positive for at least five of the bacterial or viral infections she had tested for, she diagnosed me with Chronic Fatigue Syndrome. She suggested that I start taking some herbal supplements that might help lessen my fatigue and strengthen my immune system, and to come back in 3 months, because that's how long it was likely to take to see results. Tanya, who was with me, asked her if I should still keep eating the way I had been, and she said, "Well, those things aren't good for anybody," and swiftly bade us good day.

Now, maybe I'm being dramatic, but here's what I think: when diagnosing someone with a lifelong, untreatable, and incurable condition which much of the medical field still considers psychosomatic, I would, if I were a doctor, possibly find it necessary to have more than a 5 minute conversation and then say, "See you in three months!" Maybe I would suggest readings that would be helpful to the patient in order for them to learn their about this condition, especially since it may not be something that the patient has ever heard of. I might refer them to a nutritionist who could help with the daunting task of an extremely strict diet. I might give them the numbers of some local support groups, or a website to checkout, or a specialist to see, or give them a hug or a friggin' teddy bear or SOMETHING!

However, my doctor apparently found none of these things necessary. So I went home kind of shell-shocked, ordered my supplements, searched the internet for whatever I could find, and set about the task of trying my best to be less tired.

By this point, school had resumed. I was still a full time student, but with a much lighter load than I would usually have had. As I've already said, I had to quit working in my lab at school. My junior year of college, I had been president of my college group at church (the Catholic Student Association), but at the end of the year, no one had run for the position (or any other position for that matter), so it looked like I would be president again. I agreed to do it again very reluctantly, mostly because I was afraid that the recently acquired unreliability of my body might not allow me to fulfill my responsibilities. I was trying to cut down on as many commitments as I could, trying to get my life down to a size that I could handle. It helped for sure: I was able to go to school most of the time and I did well enough in school, but it was not easy. I definitely missed a sizable number of classes.

Until midway through this past spring semester, I'm pretty sure I was in some sort of denial about my CFS. Not that I didn't think that I had it, but mostly that I really had no idea what having chronic fatigue syndrome meant. Possibly what I can compare that feeling to was my feeling when I was in the emergency room when I was 14 after having been bit in the face by my neighbor's dog. As we were waiting for the plastic surgeon, the E.R. doctor started talking to me about my scar. I can't even remember what she was saying—I vaguely remember my mom telling her that I had really great friends, so maybe she was trying to reassure me that my friends wouldn't mind my scar—but all I can remember thinking was: “Huh? What scar?!” I didn't have a scar. I had been looking at my face for nearly fifteen years, and I had no scar. What I couldn't understand was something that she took for granted as the next step: that I would have a scar, and that, being on my face, it would not be the easiest scar to live with. This was the scar she was talking about, the one she knew was going to be so much a part of my future that she could talk to me about it before I was even stitched up. But I really had no clue as to what on earth she was saying. But learn I did. After several months of having these new lines on my face, and the constant questions, and the keloid tissue, and the doctors, and the and the and the and the...I definitely knew I had a scar. [As a point of interest, I passed the 8 year mark two days ago—seems somewhat crazy that I can quantify how long it's been since I've had it, since now I can't remember what it was like not to have it. And it's strange to think that my boyfriend and best friend, as well as most of my friends here, have never known me without it. But it's also strange that there are still people around that have known me without it. Like there are two worlds, the before and the after, and that only a few people can cross that veil and it's all weird and complicated and I think to much and I digress. Ah-hem. Sorry. Anyways.]

And so it was with chronic fatigue syndrome. I couldn't really understand that I HAD chronic fatigue syndrome until time had had a chance to work it's magic on me. Over that summer, there were doctors and tests and new diets and prospects and hope for a treatment or a cure or a pill or a surgery or a test. But after my diagnosis, there was: simply time. When I went back to see my doctor after those first three months, she saw me again for about five minutes, just enough time to ask me if anything had improved and to send me on my way. When I first came in, she looked over my notes from last time, and then asked, “Would you like to try something new, and see if that helps?” I eagerly agreed, and then waited hopefully for her to tell me what this wonderful new medicine might be. After our round of questions, she said, “Okay, so I want you to try CorvalenM. That should be really helpful.” “Umm...actually, you told me to start taking that last time and I have been.” “Oh really? Hmm, guess I didn't write it down. Well, that's it then.” The shocked disappointment must have shown on my face, revealing that I had been expecting some sort of deus ex “pill,” because she then felt the need to give me this compassionate piece of advice: “It's chronic. Get used to it.” [Ugh—appalling.]

And while that's the most callous thing I think anyone has ever said to me, it is true. I had to come to terms with it, I needed to accept what I had and what that really meant, and I wasn't. (Though I absolutely don't excuse her for saying that; there are appropriate ways to get that message across, and that isn't one of them.) I still kept expecting my ill health to go away or get better or get easier. Or I expected that “getting used to it” meant “being able to deal with it,” in the same way that you might get used to working with an annoying manager or having to always wear long pants to work, even in the middle of summer; maybe it's inconvenient, but you just learn to integrate it into your routine. It took me a very very long time to understand that chronic fatigue was not going to change to accommodate me, but that I needed to accommodate it. My life had to change, I had to change, because the things that I was still expecting were not possible.

I graduated this past May, so of course during the past year I was trying to plan What's Next. I was planning to get my credential and become a high school biology teacher, and so what I wanted to do for this next year was to volunteer with JVC (Jesuit Volunteer Corps, kind of like Catholic domestic Peace Corps) to hopefully gain some teaching experience while serving the marginalized in our country. I applied, I interviewed, I went to Santa Clara for a second interview. And then I was turned down (I had been very narrow on the type of placement I wanted and because of the economy it was a very high applicant year—they didn't need me enough to submit to my demands). But no matter! I found another program, an AmeriCorps program, that was basically the same as JVC except ALL of the placements were teaching, so we would all be going through the same things together AND you could work on your master's during the program AND you got a stipend at the end of the year AND they had placements in DC, my favorite city in America, where I had always wanted to live. This was perfect! This was the window that had opened in response to JVC's door being closed.

And then my dad called me. If you know my dad at all, you'll know that my dad is a man of few words. He's a really an incredible guy—he's surprisingly funny (and he and I have surprisingly similar senses of humor), he's incredibly sweet, he can fix almost anything, he knows the answer to basically every question, and if he doesn't know if off the top of his head, he'll find out for you. But he just really doesn't talk that much. I talk to my mom pretty often and she usually covers the conversation for the both of them. Most of the time if my dad does call me, it's for things like, “Grandma's having us over for dinner on Saturday, are you free then?” So this day, when my dad called me to talk to me about this AmeriCorps program, I knew that this was an important conversation to him. My parents had been fine about me doing JVC because I had only applied to the Southwest region (basically meaning, California) so I would be close to home in case anything happened. But now I was talking about going to DC for a year and teaching full-time and taking master's classes, and my dad called to ask, “How are you going to do this?” Looking back on it now, it's fairly obvious: I couldn't. But then, it was, “I can make it work. It'll be ok.” All of my life, until that moment, I had been Katie Robinson: busy-girl extraordinaire. As a general rule, I could always tell you what I was doing any given day at least three months in advance. In high school, I was usually gone at least 13 hours a day, due to early classes, after school activities like choir and drama, A.P. study sessions, work, voice lessons, church, plus just general homework and social life type things. In college, I took as many units as would fit in my schedule, while still being active in clubs and work and whatever else, traveling to visit friends out of town whenever possible, always signing up for whatever needed doing [I found it amusing when someone recently called this particular phenomenon the “light-arm syndrome,” i.e. “Who can help me with this?” and if you always raise your hand, you have LAS!]. Of course, being this way wasn't easy and lead to many sleepless nights and mild breakdowns, but it all got done. Until that moment, I was capable of anything that I put my mind to. I was supremely able.

But after I got off the phone with my dad that evening, I realized that time was over. No, I was no longer capable of doing whatever. I had been waiting for my CFS to “wear off” or “lighten up,” like how you wait for weeks for the last dregs of a cold to clear up before you finally feel totally better. And it wasn't until that moment that I really understood that it was never going to go away. I had a new scar now, a scar on my ability, only it had been so much harder to realize because I couldn't always see it. Oh yes, some days it was painfully obvious that I was not fit for any kind of weekly-commitment, much less a year long one; some days it was easy to think that I may never be able to do anything ever again. But then there were those other days, the good days, the days that felt like normal ones, like old days, where I could be my old self, where I could have conquered the world! Imagine how much harder it would have been for me to come to terms with the scar on my face if some days it wasn't there when I looked in the mirror, if some days no one asked me what happened, if they didn't notice at all, or I didn't have to make sure I put sunscreen on it before I went outside, or if I didn't have to turn my spoon upside down everytime I ate pudding (of course eventually things ended up this way, but not for a long time). It would have been easy to pretend that it wasn't there at all. And until my dear sweet father called me, I was pretending that my CFS was some sort of sporadic mono that would clear up when it felt like it, leaving me to continue along with my life as planned.

But alas, it was not temperamental mono, and now I knew it. So I never actually applied to that AmeriCorps program. I called my parents back a few days later and told them I had decided not to do it. I was still entertaining the thought of possibly starting a credential program in the fall, but by the end of the semester (and the end of my Intro to Teaching class) I had also been able to admit to myself that at this point, there was no way I could realistically attempt to be a full-time teacher. True, teaching affords a lot of time off. But in very large chunks, not in the day-to-day sort of way that I need.

I can't even remember now what I was planning to do, try to find some sort of work I guess, at least substitute teaching for awhile until I could figure something else out. But the week before graduation, my mom reminded me of an earlier interest that I had had: what about becoming a sign language interpreter? We have a few family friends that interpret, and it's very flexible, and I really enjoyed sign language. So that's my new plan, careerwise: to go back to school and get a second bachelor's, in Deaf Studies with an emphasis in Interpreting, and become an interpreter. I retook ASL 1 this summer, and I'll keep taking ASL classes at city until state lets me come back (due to the state budget, it won't be until at least next fall). In the meantime, I still plan to sub—I'm in the process of getting set up with Clovis Unified right now—and providence has also been kind enough to grace me with a part-time position at my church as a high school youth group leader.

I'm writing this mainly because it's not really an easy thing to explain. This is mostly for those of you that I don't see regularly and don't know what's going on, though I'm sure it could help even those of you I see often. I recently went to a get-together of people that I graduated from high school with. Most of them are going off to med school or grad school, bursting with promise and expectation. And when asked what I was going to be doing, I generally gave some sort of lame, non-committal answer about, “Oh, I'm kind of going to wait and see,” and, in response, people tended to look disappointed or start looking away, as if already losing interest in my potential, as I had obviously failed to do anything with it. To a few was able to give a somewhat more accurate “I-have-chronic-fatigue-and-have-no-idea-where-my-life-is-headed” answer, but still, not very satisfactory.

Before I had really come to terms with my CFS [and I know in here I always call it CFS, but that's because it's just easier than CFIDS—don't forget that it is definitely much more complicated than fatigue], I didn't really tell people about it. Not that I was embarrassed or whatever, I just didn't think it mattered if people knew or not, because I thought it wouldn't have that much of an effect or that it would go away or that people wouldn't notice or something, I'm not sure. But now that I am fully aware that having CFS is definitely definite, I think it's really important for most people to know that I have it. It explains a lot. It often makes me late, if I can keep the commitment at all, and can make me seem disinterested when I am really just trying to stay awake/focus. It's not like I'm trying to hide behind my CFS or anything, it's just that it has it's rules, and if you don't know that I'm dancing to someone else's tune, you might find my actions at times inexplicable (for example: leaving church just before mass, even though I was obviously just preparing to cantor; spending all of a Wednesday night dinner sitting in a corner, leaning against the wall instead of sitting at a table and visiting with people; asking for rides to places I am more than capable of finding on my own; missing an entire week of a particular class or lab; saying no when asked to join you in something that I would normally have joined in on immediately).

But I am not unhappy, not in the slightest. I am extraordinarily loved by a slew of truly wonderful people. I have been blessed with work that I am capable of, so that I do not have to be a drain on the love of those people, or the government—for now. Through this I have, more than ever, felt the beautiful and loving hand of God weaving the tapestry before me. In the CFS world, I am an INCREDIBLY lucky person. I have been supported, not abandoned, by my friends and family. I even have a very close friend who went through something similar when she was my age and is still dealing with a similar condition, so I have had her example and experience to learn from (though, believe me, I am still learning). Thus far, I have met with very little of the suspicion that many sufferers do, that they are merely lazy or faking (though one particular friend was rather rude about my new career choice, finding it beneath me; personally I rather find refusing to work because I cannot do work within my previously chosen field much more beneath me than finding work I would actually be able to do, but some of us have much more limited views of value and success). Every once and awhile someone makes an offhanded comment about how lucky I am to have spent all day in bed, which I do find irritating at the time, but they are innocent comments made by good-willed people, not contemptuous jibes as they sometimes are to other sufferers. Though not always, I can still drive myself around most of the time, which many people with CFS cannot. I don't need a cane or a wheelchair to get around, like many people with CFS. What makes me particularly sad about most CFS sufferers is that they are full to the brim with a passive-aggressive rage. They have often been mocked, mistrusted, and mistreated as a result of their condition, and as a result tend to be rather prickly about it (which I discovered as I was looking for some sort of CFS awareness type shirt, and found most things to be along the lines of this: http://www.chronic-illness.org/blog/its-all-in-your-head). I was lucky enough to be diagnosed not only very quickly, but in a time when, even though doctors cannot entirely define or treat CFS, they are able to recognize that somehow a faulty endocrine system is involved. I am incredibly, incredibly blessed, and very much aware of the fact.

Which is not to say that it's easy to live with or easy to be happy about. It's not. I had a particularly rough day a few weeks ago when I read that the CDC compares the experience of having CFS to the last four months of having AIDS. Any activities—hanging out with friends, work, family time, cooking, laundry—tend to result in some sort of “payback” time, when I have to recoup far beyond whatever energy I expended. But life is going on, and it hasn't left me behind. Often I can effect how I feel by what choices I make, including knowing when a particular choice is going to make me feel much worse, and so saving it for a time when I would be able to recoup from it (such as travel, a late night with friends, eating a particular something).

And there are a few new things on the horizon. I have recently read about another condition called neurally mediated hypotension which I am fairly convinced that I have. I'm in the steps of getting tested for it now (I'll tell you about how they test for it later, it's a hoot), and if diagnosed with NMH, it's treatment could help tremendously with my ability to function day-to-day. I have also ended up in contact with an R.N. from Canada who I am planning to visit at her wellness centre in October. If you don't know anything about how CFS has to be treated, she sounds like a quack, but the truth is that while the world of traditional medicine can usually only prescribe antidepressants to CFS sufferers, a holistic approach is often able to improve CFS symptoms to some degree. We CFSians cannot live comfortably in the caffeinated, fast food, high stress world that we live in. Our bodies have lost the ability to cope properly with these things, and so this Canadian R.N. is helping to teach me how to take care of my body properly. While I'm sure there is someone closer who could help me, finding people who know anything about CFS is particularly challenging, and once you do, finding people who are also compassionate is, well if we take my doctor as an example, difficult. So through another stroke of blessed providence we have found Janet, and though I haven't met her, my parents adore her. So, I'm going to try her out, and while I am hopeful that she'll be able to help me, if she's not, I at least get to take a weeklong trip to the Canadian Rockies. I really don't see a downside to that. I'll keep you guys posted on the progress of that. For now, she has me started on some new supplements (I stopped taking the ones my doctor prescribed after the first round because, 1. they were really expensive, 2. they were really difficult to take according to the directions without going crazy, i.e. take this one two hours before you eat anything, take this one with food, take this one after you've done three somersaults, take this one when the moon is three-quarters full, etc., 3. one of them made my head feel very strange, and 4. they didn't really seem to be making any difference), but ANYWAYS, Janet has me on some new supplements to help balance my diet and body chemistry and such. I just started them yesterday, so I don't really have much news to report on that, except for one I have to take 12 of a day, and I find that a little ridiculous.

I think that's about the end of the story for now. There's a lot more to it all, but I'll save it for another time. PLEASE don't be shy about commenting or asking questions—if you have something you'd like to say, but are unsure if you should, consider how long it took me to write this dang post, and give me the benefit of knowing that you actually had something to say/ask about it. : )

I hope that you all are doing well, and would be happy to know what's up with you. And for now, simply: God bless.


  1. hi katie! <3 i actually read through all of that, haha. it's neat that i'm in the pre-scar era. i remember that summer- i think we (and a bunch of choir people [it's weird saying choir people because i think of high school choir people when i think "choir people" but it was like jodie and stephanie f. and i don't remember who else]) went to see the wedding planner or something. i don't know if you went to the actual movie or if you just met up with us afterwards. anyway. not important. your doctor sounds like the stupid pre-meds i've met who don't give a damn about people despite their profession of improving the quality of people's lives. ughhh. i'm happy you've found Janet- i hope her methods help your health even if it's just a little bit (but hopefully it'll be a lotta bit). and yay canada!

  2. Lol, I remember that! You guys actually went to see The Others, and I met up with you afterwards; I wasn't feeling up for anything scary at that point. And yeah, my doctor is ridic, so Janet should be a fun change! Thanks for reading, Gailie!

  3. As I read this, I was deeply saddened by the fact that I couldn't insert comments as I read :) Oh well, you get to hear my commentary quite often. I'm glad you're posting about this. And...yay Canada as well!

  4. Dear Katie,What Tanya said. AND Your not in your own boat regarding the credential program. Coming to the point of realizing you just cant do it all is hard. And then you think, why not? Everyone else can. And I know I'm that good. Maybe better at some things...anyway, my heart goes out to you. I'm sending prayers. I'm glad I came across your blog! I'm gonna start "following" it so I can stay updated!


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