What about ME?

This is the trailer for a new UK documentary about CFS entitled, "What about ME?"  ME, of course, is a double entendre because it also refers to the UK name for the disease, Myalgic Encephalomyelitis (ME).  As Alison noted over at Blog Wormwood, "sounds much scarier, doesn't it?"

I haven't been able to get the website (http://www.whataboutme.biz/) to work, but here is what Alison had to say about the making of this documentary:

On their list of people interviewed, I recognize Dr. Sarah Myhill, Dr. Charles Shepherd, and Anette Whittmore, founder of the Whittmore-Peterson Institute, which funded the groundbreaking XMRV study.

"People are suffering. But they are being told it’s all in the mind. Our aim is to investigate ME further, to put the plight of an ME sufferer in the public’s consciousness and to encourage further research and health policy reform. We hope to spread the word through this website which will have videos and podcasts on ME, short virals on the ME situation delivered multi-platform, a TV documentary aimed at a prime-time audience, a worldwide theatrical release and a docu-drama dramatizing an ME sufferer’s struggle, based on the novel “The State of Me,” by Nasim Marie Jafry."

I'd like to get my hands on that novel, and I really hope that this documentary gets made, because this story needs to be told.  Here's the trailer... it's definitely worth a watch, even if you don't know anything about CFS/ME.

ME Promo from Double D Productions on Vimeo.

A Bit of Whining

Oh, I feel so very lazy today.  It's already 4:30, and I've really done nothing.  I have a terrible cold, and I just feel awful.  I'm supposed to help shovel the deck off before the new snow hits:
(The weather forecast, as sent to me by my meteorologist sister)

...and I have to finish my paper edits before the deadline at 7:30 tonight... and I also really need to shower and join the real world of fully clothed people.

Urgh.  Some days, I'm just really frustrated with myself.

"...if you need to crash, then crash and burn, you're not alone..."

For those who recognize, YES, those are Savage Garden lyrics. It was the only song I could think of that had the word CRASH in it, which refers to, you guessed it, the inevitable crash I experienced today after the wonderful productivity of yesterday.

I stayed up too late talking to my boyfriend and also my best friend, who's in India and so I have to work around her time zone whenever we talk. I miss her so much! Anyway, back to the point, I then slept til 3 pm, had ridiculous dreams, finally woke up... only to then take a nap around 6 pm and sleep through dinner til about 8. As my 14-year-old sister might say... fail. Major fail.

But, really, as crashes go, this was one of the best possible scenarios, and that's what I'm grateful for today. I got a lot done yesterday, so there wasn't too much pressure, and it snowed all day today, so it's not like I could have gone anywhere anyway. I have tomorrow to pick up the pieces, and I did manage to get some medical forms filled out and sent away, so that makes me feel better. I'm seeing a doctor on Tuesday who specializes in Lyme disease, and I finally applied to see this different doctor who specializes in chronic fatigue syndrome. My immunologist recommended I contact her, and my mom's been giggling all week at my excuse for not doing so-- that I'm too fatigued to email the chronic fatigue doctor!

I'm a praying sort, and my prayers are with all of you this week-- every person has their own burden to bear, and I know a lot of you are struggling under the weight of yours. I pray that God give you the strength to endure, that there is something to be gained from your situation, and that you are returned to a more hopeful and happy place in your life very, very soon!

Busy, busy, busy!

That was for you, Jenny. :-P

In Methodist churches (and others I'm sure, but this is where I've experienced it), they have a time during the service where church members offer up prayers and praises to the congregation. I have a major praise today: I had a busy day today!

It started with a little mix-up at my doctor's office that caused me to get up at 8:30 this morning for an appointment that is now this Tuesday. Oops. (It was a problem with their automated reminder system-- it had misinformed me). I briefly considered going back to sleep because I was so tired, but instead, at my mom's nudging, I drank some coffee and got to work brainstorming and working on some journalism assignments. After that, I guess momentum kept me going, followed by adrenaline, because I managed to work all day today. I did homework, answered emails, made important phone calls, put away my laundry, and cleaned my room and bathroom. Seriously-- this was a busy day, I dare say even for a well person, and most DEFINITELY for a chronicall fatigued person. Of course, I had to take numerous rests, and I'm keeping my fingers crossed that I didn't push myself too hard and end up crashing tomorrow... but still, I got a lot done, and the peace of mind that produced might just be worth a potential crash tomorrow. Providing that it doesn't last more than just Saturday, that is.

I wish someone (with more experience in psychology than me) would write something on different personality types and chronic illness, though I suppose that it's really not easy no matter who you are. Anyway, I read a book a couple of months back called Do What You Are. It's fantastic, by the way, if you're still looking for that perfect career path. Anyway, they use the Meyer-Briggs personality test, and I’m an ENFP, which stands for enigmatic-intuitive-feeling-perceptive. The individual components of that aren’t really important for my point, but the overall description describes people with my personality type as enthusiastic “people-people” with boundless energy.
You’re probably starting to get my drift about now.
Of course, I WISH I had limitless energy. Doesn’t everyone? But it is an odd conundrum, isn’t it, when your personality would lead you to multitask and over-schedule in a way that is absolutely detrimental to one’s health?
Well, I mention it because, as I told a house guest tonight, I used my energy today to be “as type A as possible.” I framed pictures, I dusted surfaces, I reorganized closets, I folded my underwear… I got everything exactly the way I like it.
So I may be exhausted… but I know I’ll sleep well tonight in my oh-so-perfectly laid out, organized room. :)
Good night, everyone! Good luck with your own journeys, and thanks for reading my minor success story.

Hate to blog and run...

...but it's 12:09 and this girl needs some sleep!

However, I wanted to stop by, mostly because I haven't blogged since the 1st of November! Don't worry, I haven't abandoned the project; life just got in the way. Between sickness, the holidays, and my computer being busted until today (hallelujah! I am truly a child of the digital age), there was simply no blogging to be had. Oh, I also attempted to take part in National Novel Writing Month during November, during which a bunch of fanatic writers attempt to write a whole novel (50,000 words or more) during November. Unfortunately, I didn't finish, but it was still good fun, and I have every intention of getting back to that poor, lonely, unfinished manuscript... any day now...

I've also been medically busy, per usual. I'm pursuing a doctor who specializes in chronic fatigue, chronic Lyme, and things like that; I'm looking into a possible Lyme diagnosis; and I've even been trying out a, get this, magnetic bed the past couple of weeks. I kid you not. I met a lady with a similar condition who has had fantastic results with it. It was worth a try, but I'm sad to report that I don't notice that much change. Actually, my sleep has been a little poorer because it's become a bit uncomfortable. Well, c'est la vie. Always worth a try! I'm still interested in alternative therapies, and I'm looking into finding a nutritionist to help me craft a better diet. I really don't eat that well, if I'm honest with myself, and I've always gotten away with it because I'm young and have a good metabolism. But there's so much more to good nutrition than weight management, and I really think I would benefit from learning more about eating the right foods to increase energy and overall health. So I'll let you all know how that goes.

I have way more to say, but I'm going to save it for later this week and just leave you all with my last big piece of news: I'm going back to school this semester! It's VERY part-time (2 classes, once a week each), and it's local, so I can continue to live at home, which tends to make things easier for me, having a built-in support system for when I relapse. I'm pretty nervous about it (and about paying it and all the extra anxiety-producers that go into schooling), but I'm hopeful too, and excited to be taking another step toward graduation, independence, adulthood...

I'm truly hoping that 2010 is my year. :)

What are you all hoping for in 2010?

Medical Mayhem Week

No, this isn't an actual or blogger-invented holiday. It's just what happens when you schedule three doctors appointments in a row, and the first goes terribly wrong.

Doctor # 1:

Last Wednesday, I was scheduled to see an Infectious Disease specialist in MD. He was supposed to be able to tell whether my Eppstein Barr levels point to chronic mono, and whether that means he could diagnose me with chronic fatigue syndrome/ME. I had typed out four pages of medical information on me-- what drugs I take and in what doses, my health history, and my symptoms in order of severity, among other stuff. I had even printed out a copy of the Canadian handbook for diagnosing ME/CFS, since it's just way better than the CDC's. I was ready man. Next stop: diagnosis!

Only, my mom and I didn't quite realize how much time it would take to get to the next stop when driving through Washington, DC AND Baltimore rush-hour traffic. Ugh. Ugh, ugh, ugh, ugh. It was not pretty.

Then there was the fun phone mix-up. When I realized we were going to be late, I called to tell the doctor's office, in case they told me to turn around, that they couldn't see us today. Some apathetic lady said she'd pass on the message. An hour later, as we were literally exiting onto the road that the clinic was on, another lady called me and said, "Excuse me, miss? This is Doctor Hudgen's office. We've never heard of you, but we got a message that you're going to be late for an appointment?..."

AWESOME.

So I made a few more calls, managed to get in touch with the RIGHT office this time, and told a snarky lady we'll call Dede what happened and how we were pulling in right now. She says ok, hangs up, then immediately calls me back (?) to tell me that the doctor can't see me anymore.

I'm going to back up here. I get it. I know we're late. I know it's not totally our fault we're late, and it's definitely not our fault that we didn't contact the office in time (that would be the building director's mea culpa). But, I also realize that schedules are schedules, and I understand that the doctor has other commitments. So, I get both sides of the story, but that doesn't make it any less frustrating. We drove TWO and a HALF HOURS to get there. I want a diagnosis!

We ended up getting the name for an infectious disease specialist in our area (Annandale! Woop woop!), but then found out that I need to see not just any old infectious disease specialist (as if that isn't specialized enough), but a specific kind that actually believes there's a link between the Eppstein Barr virus and ME/CFS. In other words, after swearing never to drive back to MD again... I have to call and make another appointment with MD. And it took me two months to get the one I just barely missed!

*shakes it off*

Doctor #2:

Much less traumatic and much more mundane, my second appointment was with my orthopedic, Dr. Robert Redford.

(No, that's not his real name, but that's who he looks like, so that's now his fun code name. Really, I'm not into older guys, like not AT ALL, but my orthopedic is a very handsome older man. It's impossible to deny).

Basically, things looked good. I could see my bone regrowth and I'm allowed to wear shoes, plural, again, but only if they're sneakers or very stiff-soled. He made it very clear that I was not to wear "little slippers" (a.k.a. ballet flats, which basically make up my whole shoe wardrobe) until my foot was completely healed. Although he probably doesn't really support that footwear choice even then, but at that point it becomes my problem again. Besides, we're entering boot season, so that should allow ample time for my toesy to heal.

Doctor #3:

I loved this doctor, although I'm still a bit undecided on whether this is the best place for me to be. I went to her as an endocronologist/thyroid specialist, but she's an internist as well, so who knows? Maybe she could be my full-time doc? Too soon to tell. But she checks email, is easy to get in touch with, and she actually listens and spends time with me. She looked at all my charts and gave me some things to try while we wait for other tests to come back. I'm now taking a probiotic with lunch or dinner every day, and though I've only done it twice, it seems to help with my GI issues. I'm also on some anti-thyroid drugs... I'm taking half a pill at night until about Wednesday, when I can start taking a full pill every night. It'll be a couple of weeks until we know if that actually helps. We're trying that because the beginning of my ME/CFS problems began with a bad bout of acute thyroiditis. I think I had mild issues before, but that thyroiditis really took things up a notch. So, Dr. Goodbar (again, made up) and I hypothesized that the disease could have knocked things out of whack hormonally, and so it couldn't hurt to just test and see if adjusting the thyroid hormones made a difference in my symptoms. So, I'm a bit of a guinea pig right now.

I haven't quite recovered from this week's ridiculousness, but I'm getting there. By Friday, I was sick again; and by Saturday, I was both sick and experiencing a lot of dizziness, which I suspect might be from the new anti-thyroid drugs. I don't mind waiting out the new symptoms, but I do wish I had planned it a little better. I had to miss my 5-year high school reunion and, psuedo-masochistic reasonings unknown, I was really looking forward to going to that. I've lost touch with so many people from my lack of energy for keeping in touch, and it's recently become really important to me to undo some of the damage I've done. Some friends just won't understand why my life is how it is right now, and I'm coming to terms with that, but I've discovered that most people, if given a chance, will pleasantly surprise me. I am lucky to have been blessed with good friends... I just wish more of them lived nearer to me!

Well, this post has become rather long. Thanks for reading, and I hope that life brings you joy in all its many forms. Ciao~

Some interesting CFS news, stolen from another blogger ;-)

Virus Linked to Chronic Fatigue Syndrome

Hmm. I wonder if you can ask to be tested for this retrovirus in your everyday LAbcorp? I'm headed there on Monday for my final round of lupus testing (though I'm pretty sure it will be negative-- I'm like 90% convinved I have CFIDS and my doctors are just being really thorough).

They also suggest antiviral drugs as treatment, similar to what HIV-patients would take. I'm an English-major, so excuse me for any gaps in the science, but it sounds like an interesting proposition. Think they'll have them out in time for me to go back for Wake's spring semester? *fingers crossed*

Sophomore slump...?

...is what I've decided to call the feeling after the first blog post when you think, "Um, ok, so I set the thing up and introduced it. I'm not sure I have as many thoughts as I thought I did."

I'm going to try hard not to let this blog become a big whine-fest, especially since I have yet to find some other sufferers to commiserate with. But the thing is, even if I find them, I don't really want to commiserate, per se... I guess I just want to talk to someone who knows how I'm feeling. I find myself being resentful of a lot of people when, trying to help, they encourage me to do something that I don't feel well enough to do. I know they're trying to be supportive, but for some reason, it doesn't feel that way to me. It feels more like, "Hey, I bet you're faking" or "Stop being lazy and go do something." So, I haven't really worked through that yet.

Oh, but I am becoming quite educated! I now own three books on the subject, which I think illustrates one way in which I am related to my father, who, as my mother once said, "never met a self-help book that he didn't like" (and then apply to EVERYTHING for a month or so... yeah that last comment is me. But don't get me wrong. I love my dad).

Anyway, so I bought these books: Living Well with Autoimmune Disease by Mary J. Shomon, Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties by Laurie Edwards, and (my favorite title), Women, Work, and Autoimmune Disease: Keep Working, Girlfriend! by Rosalind Joffe and Joan Friedlander. Since I'm only halfway through the first one, I'll wait to tell you what I think of them, but that's what I'm reading right now. Until Confessions of a Shopaholic or the November issue of Lucky comes, that is*.


But before I did my part to keep Amazon.com in business, I read (most of) this book I found in the library at Wake Forest when I was there visiting my boyfriend, Christian. It was called The Chronic Illness Experience: Embracing the Imperfect Life by Cheri Register. While in retrospect, this book isn't exactly the attitude I want to mirror, I really appreciated the commiseration in book form. The author suggests that coming to terms with chronic illness is a bit like grieving a lost part of yourself, and that we tend to go through the stages of grief: Denial, Anger, Bargaining, Depression, Acceptance. Not necessarily in that order. So far, I've done denial (thus having left school three times instead of once... because I went back when I was still sick, you know), definitely done anger, done depression (though that's hard since it's part of my diagnosis so I'm not sure if that counts), and I think I may be both bargaining and working my way into acceptance. I hope anyways.

Anyway, the reason I bring Ms. Register's book up is that she too mentioned her problem with the simple greeting, "How are you?" and I wanted to show you her explanation because I think she really verbalized my own sometimes over-the-top annoyance with the social nicety:

The standard greeting, "How are you?" is a usually innocuous social ritual. It does not call for a recitation of horrors, but only for assurance that all is well enough for conversation to proceed. But when the answer is not, in truth, the formulaic "fine," the question becomes an awkward reminder of our culture's ambivalence about illness: Where do you draw the boundary between a collective concern for each other's health and respect for an individual's privacy? How much do others need or want to know? How much do you need or want to tell? Keeping these claims in balance is a matter of etiquette that is also fraught with emotion. Invisible chronic illness can turn this seemingly trivial greeting into a fearsome moment of decision, and there are no clear rules to follow. What a relief it would be to know that all of us, healthy and sick, had similar intentions and expectations, so that no one had to feel either affronted or embarrassed.

Nearly everyone I interviewed expressed discomfort or even annoyance with the "How are you?" greeting. In good times, conversational habits are hardly a major issue, and most of us adhere to the forms. Yet when serious illness is an immediate worry, the question can seem coldly dishonest. It tantalizes you with an opportunity to reveal your suffering, yet reminds you that physical complaints are not suitable for polite conversation. Instead of answering the question with painful truths, most of us give in to custom. There is a more pointed variant, however, that seems to call for an honest response: "How aaaaare you?" or "How are you feeling?" People who know you have been sick imbue the question with meaning by rephrasing it this way. Their concern about your health is so evident that you may even feel obliged to answer correctly: ''Both legs are numb and I've had double vision for two weeks, but now I'm starting on steroids." If these details have been weighing on
your mind, ''How are you feeling?" can be a welcome invitation to share the burden. On the other hand, it can feel like an invasion of privacy. Your illness becomes the topic of conversation whether you want it to be or not.

Choosing an answer means assessing, very quickly, your state of health and the benefits and hazards of revealing it, as well as the likely intentions of the person asking the question: Do they sincerely want to know or are they just showing concern? Few of the people I talked with had come up with satisfying answers.
The "How are you?" greeting is especially troublesome for the chronically ill because it presumes the possibility of improvement. At worst, it sounds like a test of achievement: "Haven't you managed to shake this thing yet?" At best, its frequent reiteration
shows how difficult it is for people to understand chronicity, that this illness will never be over but is, in fact, a constant feature of your life. To let her acquaintances know how tiresome the question was getting during one long flare-up, Gloria Murphy wore a T-shirt that said, "Just fine, thanks." Delores Garlid has a quick but firm way of responding to people who do not understand the nature of multiple sclerosis. It draws an important distinction between her physical health and her general state of being:

Before they knew about the disablement, they never asked, "Well, how are you today?" I kind of bite my tongue. These aren't people that I am around socially. I don't spend the time with them that it would take to sit down and explain. So I try to be honest with them. "The disability is the same as it was yesterday, but I'm fine, thank you."

Advice for loved ones:
If acquaintances, who are governed by etiquette, are to become friends, who are motivated by empathy, then they need to internalize the basic rules of behavior toward people who are chronically ill: Respect the right to privacy, without turning it into a stigmatizing isolation. Allow opportunities for candor without imposing an obligation to tell all. Acknowledge suffering where you see it, without the delusion that you can ease it. Affirm the right to take responsibility, even if you disagree with the choices made. Realize that the goal of your involvement is to help restore a sense of normalcy, which sometimes means ignoring the illness altogether. Often the most welcome help is diversion: an absorbing book or audiotape, a scenic drive, or a lively conversation about anything but illness.

Anyway, that's all I've got for today, except to I guess tell you how I am (haha, get it, because of the questi-... ok yeah I'm done). I feel fluish lately, I'm sleeping too much and I feel like a narcopleptic during the day. Today on my way home I really thought, I should NOT be driving like this. I was just so sleepy and dizzy. Also, my head hurts, and my hand joints, feeling ignored I'm sure, have decided to speak up and complain too. Metaphorically, I mean. They don't like literally make noise, like creaking or anything. That'd be weird.

I hope you all are doing better than I am, and thanks for committing to the reading. :) I'm going to try to sleep now!

*For the record, I used to read real books. I swear. I was an English major. But I'm in a real-book-reading slump. I have an Ayn Rand book under my bed that I used to squish a spider a month ago and still haven't retrieved. I also just remembered that the loaner of said Ayn Rand book reads this blog so I think I will dive under there and fish that out now...

SWF seeking others... did I mention the "S" stands for suffering?

Okay, excuse my dumb wordplay, but welcome to my blog! I'm a 23-year-old female suffering from what I am pretty sure is chronic fatigue syndrome with an immunity disorder component. For those of you who are still reading, that basically means I'm sick... All. The. Time. I just feel like I have the flu almost every day, with some good days in between. I'm still seeing doctors to rule out the other medical options, but as I've been at this for two and a half years now, I feel like I need to try to move on... in case there really isn't a treatment for me.

I've had trouble finding other 20-somethings who are dealing with CFIDS and, following the footsteps of one other blogger, I thought I'd start a blog of my own to help deal with the specific issues that arise from having CFIDS at such a young age. I'll go into more detail later, but for now, welcome, and please use the comment section as much as you like-- let me know you're out there!

Hoping,
Robyn