New Hero!

Holy Shit!  I mean, I know that no-one reads this blog, but if you happen to be a person reading this, have you checked out Peggy Munson?  Because I think you should!  She's a writer, artist, activist, and invalid of the queer/Chronic Fatigue Syndrome type.  I just happened upon her blog from another blog, and it is seriously inspiring. 

The idea that we can take a lot of inspiration and tactics from the AIDS movement is right on.  How many of us have read endless articles about CFS/ME and XMRV research not getting taken seriously and just felt so defeated and helpless?  I know I've thought many times that it would probably be better for my mental health to just stop reading them entirely, stop paying any attention to the medical establishment, and just get on with my sick life as best as I can without hope for getting better.  Acceptance is great and all, but science and medicine have real potential for helping us.  Particularly now, since discovery of XMRV and the growing scientific consensus that this is a viral condition. 

Read Peggy Munson's eloquent appeal to get active in whatever creative ways we can come up with from our beds and houses, using the history of AIDS activism as our guide.   She has also started a documentation and visibility website called the The EXit Project, along with editing a book called "Stricken: Voiced from the Hidden Epidemic of Chronic Fatigue Syndrome." 
 

The Story of my CFIDS

I've edited this a little since I first posted it.  It's still a "story" but I'm very adamantly opposed to making illness a narrative.  It's a shitty thing that happens, and we try to fit narratives to it, and discard and change them as they no longer apply.  Here is a sequence of events occurring over time.

I first started getting sick in the fall of 2004, when I was 21 years old.  As sometimes happens with this illness, it set in slowly, during a terribly stressful year of my life.  In another state, my parents were getting a messy divorce, and my mom (at least in my perception) was falling apart.  It was a weird time in my life for all this to be happening.  I was far away, and I was almost an adult, but not really.   It was loss of a family that at the time I didn’t think much of, that I had been trying to get away from, but I needed them more than let myself know.  Instead, I got sick 

At the time, I didn’t think a lot about health, or value my body very much.  I’d always been an unathletic kid, who put much more value on her brain than her body.  My body was a kind of machine that carried my mind around.  And I was vegan, which couldn’t have helped things. I was a stressed-out insomniac.  Eventually I got tonsillitis and a tonsillectomy that February, on my 22^nd birthday.  It didn’t help, and I continued my descent.

Looking back on it, my parents’ divorce and my reaction to it were definitely the reasons I first became sick, but they aren't the reason I’ve stayed sick for all these years.  At the time, when I thought I was SO SICK, I didn’t know what sick was.  I was still a full-time student, I played in bands and made art with my friends, and felt indignantly deprived if I had to spend even one weekend night at home in bed.  I rested the absolute least amount possible.  I made it through the year, resolved some of my bad habits and, somehow, got better.   I had a full-time job that summer and then finished my last semester of college. 

The whole time I skimmed the surface of illness, but I never fell in completely until a year and a half after the initial onset.  In my typical fashion, I went skipping down to New Orleans, to do some of the most stressful volunteer work of my life, and all my previous bad reactions to stress came back.  I ended up getting sick (typical flu-like symptoms, as usual) and going back to my mom’s house in Lawrence, Kansas, to “recover” and figure out what to do next. 

I didn’t know yet that the state of sickness I had found my way into would become more or less permanent; for months I kept thinking it would go away in a week or two, and I planned my life accordingly.   I moved in with some friends in Portland, Oregon, and tried to have a normal life amidst the dawning realization that I was really, actually, persistently sick.  I threw myself into the study of every kind of alternative medicine possible (I considered allopathy to have already failed me) and began to realize (there’s only so much crying one can do in doctors’ offices) that I needed to process some of these old emotions that had contributed to my illness in the first place.  It was a revelation.  I let myself feel things, and felt them leave my body.  I was absolutely certain that this was how I was going to get better.  I thought my illness had existed to teach me a lesson, to put my back in touch with my body, with my family and my emotions, in a difficult but poetic way. 

The narrative arc was perfect, but it turned out to be (obviously) fictional.   It was a nice story while it lasted.  That was four years ago.   Since then, I’ve seen doctors, naturopaths,  acupuncturists, and therapists, who have diagnosed me nutritional deficiencies, hypothyroidism, depression, candida, adrenal fatigue, karmic debt, craziness, or nothing at all.  I’ve taken prescriptions, herbs, supplements, and hormones.  I’ve slowly gotten sicker, which is scary.   I’ve been sick in bed most of the day, most days, for several years. 

When I moved to Philadelphia, two years ago, I decided that I wasn’t going to try to get better anymore.  I would stop running around to doctors, trying to get a diagnosis.  It was too costly, financially and emotionally, and I was just going to focus on what I could do, with exactly the amount of health I had.  I started drawing and writing, two excellent activities to do from bed, and I tried to start playing music again but found it a little bit beyond the reach of my energy.   I spent a lot of time at home, and tried to make my home a good place.  Every so often I would freak out and try to find some naturopath with The Answer (inevitable failure), but on the whole I stuck to my guns and my life got exponentially better.  Not easy, or healthy, but much, much better. 

Somewhere along the line I stumbled upon the idea of becoming an acupuncturist, because acupuncture has helped me (for pain and insomnia), and because I think I could do it as a job. (I’d been working online and doing eight hours a week of tutoring.)  I moved out to Oakland this September, and started acupuncture school.  It was WAY too much.  Once again, I’ve over-estimated myself, and crashed, hardcore. 

I’m sick with something that feels like a constant flu, but mostly I just feel exhausted.  I’m exhausted from moving across the country and being a student, but mostly from the many years I’ve spent in constant struggle against the confusion, despair, and isolation of having a debilitating, unexplained illness. 

But what can you do?  You do what you can!  You go bravely forward, which is what I fully plan on doing, but I’ve also come to a radical (to me) decision: to go bravely backward for a while.  Going home (to Lawrence, Kansas) and getting taken care of by my family (I’m 28 now, not old yet) has always been the epitome of giving up and giving in, and one true goal to avoid in this clusterfuck of a disease.  But I’m tired of trying to be strong, of going beyond my limits for some idea of making it on my own.  Reading back over the course of my illness, it’s been so apparent that even when I tried to rest enough, I couldn’t.  I couldn’t stand being alone, or doing nothing.  I think now I maybe can, a little bit more.  I don’t want to say that I think it will cure me, but I think it’s worth a shot.  I’m going to try.  And for the sake of assuaging boredom and isolation, I’m going to write about it.  Thank you for reading!       

Introductions

So, I’ve been thinking about making this blog, a blog for people who are dealing with the same sort of thing I’m dealing with: living with Chronic Fatigue/Immune Deficiency Syndrome.  I have my doubts about the medium: I would hate to see communication collapse into an electronic vortex of exhibitionism and voyeurism.  But unlike Facebook (which I love and hate) and twitter (hate), this is at least a chance to give one-sided communication some length and (hopefully, therefore) depth.  The best part about the internet is that it allows us to connect across great distances, and for those of us who don’t get out as much as we'd like, I think we can use it to create community and mutual support.   Also, I’ve been taking a lot of heart in some other CFIDS bloggers who are writing about their daily lives and experiences.  To them, and to you, whoever is reading this, I’d like to say:  Thank you.  Thanks for writing and sharing your stories.  Living with chronic illness is a heroic and mundane struggle, and I’m very interested in how you are fighting it.   I’m trying hard in my life right now to make it positive, productive, and meaningful, even in its restricted state.   I hope that we can trade a little inspiration and strength.