It's the annual CFIDS Awareness Day (well, tomorrow is but today was the lobby day -- which I did "virtually" at the CFIDS Association). Last year I shared what I've lost having CFIDS, but this year I thought I'd be a little more upbeat and share what is good about being sick.
My beloved A. If I hadn't been sick, I never would have been bored and lonely and wandering around a chatroom in the middle of the afternoon nearly five years ago. After chatting for over a year, we finally met in person in 2003 when I had a mild remission. It's funny because while I've spent so much of my time wishing I could have back what I had in 2003, it occurred to me last week that maybe 2003 was a gift -- an aberration -- that made it possible for A. and I to finally meet.
An examined life Socrates said that the unexamined life is not worth living and let's face, I've got lots o' time for examining life, some of which has been guided through the use of Cranial Fluid Dynamics (or understanding the Life Forces). And as I do more and more of that examining -- seeing the "horror and wonder that lurk...behind the usual surface of health" -- I realize what an extraordinary gift I've been given.
I appreciate life more Whether it's finding absolute awe in simply riding the bus, or just enjoying today because sometimes I don't know how many days may be left, this is definitely one of the most amazing gifts that illness bestows. Most people don't appreciate all that they're able to do until they're old and can't do all that stuff anymore. I've been able to learn that in my twenties and thirties.
It's movie night every day I've always been that person who hasn't seen whatever film people are talking about. Now I can hold my own -- so long as it's on DVD.
I get to wear my pajamas all the time While others suffer miserably in pantyhose (and we think veiling is oppressive!), I get to wear my nice comfy jammies. I've even worn them to the doctor's office and the grocery store.
I get to sleep in Granted, I wouldn't mind being able to fall asleep earlier and get up earlier (er...it's a control thing). But, I'm rarely rushed to get out of bed in the morning.
My science knowledge has increased exponentially Yeah, it's true. I'm a humanities sorta gal. I studied history and literature. I did take a chemistry class my freshman year of college and statistics during summer term a couple of years later, but that's about it. However, we did study history of science in my honors college curriculum, and I've definitely been able to put Thomas Kuhn to use. Plus, I now know stuff about human anatomy and microbiology that I never dreamed I would. Seriously. Friends and family now call me up to ask health questions, and the scary thing is I can usually answer them.
I've experienced other forms of medicine and knowledge In the last seven years I've been treated by acupuncturists, naturopaths, a homeopath, and massage therapists using a variety of modalities including reflexology and Reiki, as well as Cranial Fluid Dynamic (see above link). And through all this I've learned a lot about different ways to construct and "know" the body.
I've reconnected with my feminist self This post pretty much says it all...in the most rambling of prose...
Obviously, there are some personality qualities that have been enhanced through illness including:
I'm more assertive When I had the knee and ankle surgery that pushed my CFIDS into a full-blown disabling disease, I ended up with blood clots in my leg and lungs and then started hemorrhaging on the blood thinners given to treat the blood clots. I realized quickly that I had to start being more assertive or somebody was going to seriously kill me. I can't say I'm fearless quite yet, but I'm definitely not as passive as I was before surgery.
I'm more compassionate Had I not grown up with some sort of undefinable condition as well as being fat, I suspect I would be a very judgmental, indifferent person. I can't help but be compassionate because I require so much compassion from others.
I'm less dogmatic Certainly I'm less so when it comes to theology, but I feel like that's true with other issues as well. Not that I'm not at all dogmatic. If you read this blog much, you already know that.
I'm more comfortable with myself As I pointed out a few posts back, being sick and fat has allowed me to get off the "must be perfect" fast track that so many women my age are on.
Right. I imagine I've forgotten some thing, as well as will think of more as time goes by. And some of you with CFIDS might have your own illness gifts also.
Yeah, I know. I've been a bit quiet again on the blogging front. But damn, all I've wanted to do is sleep!
Some of that is probably the Elavil. Each week we're increasing the dose by 10mg until I hit the therapeutic dose of 50mg. Six years ago when I was on Elavil, anything over 20mg made me sleepy, with 50mg making me practically comatose. I'm at 30mg right now. The Oregon Health Plan is making me try this for what appears to be neuropathic pain in my sacrum/pelvis, instead of pregabalin (Lyrica) which my doctor originally prescribed and is also helpful for Fibromyalgia. But if the Elavil doesn't work, then my doctor thinks we'll have a better chance of convincing OHP to pay for pregabalin. You know, playing their game in the hopes of winning.
Plus, a few weeks ago I did a week-long trial of D-ribose after reading this study awhile back (as well as heard about it from other patients) and it did indeed boost my energy level, as well reduced widespread pain a little. It actually made me sort of remember what it was like to feel normal. Sort of. But as it's been a couple of weeks now since I ran out, I think I'm back to my normal achy icky-feeling self. Needless to say, I hope to get more of that after this trial of Elavil is over.
6 comments:
Great post! Thanks for mentioning the D-ribose. I have a hard time keeping up with the research. It's so overwhelming and so much of it is bunk. (My favourite was the study into whether CFS is an exercise phobia. Where do they find these doctors?)
This disease has also made me more compassionate, though I still have trouble extending that compassion to myself. I have to keep telling myself that it's not my fault I can't clean the bathroom.
I've also learned that practitioners are not psychic. I think they want to believe they can help so they can justify fleecing their clients. Fortunately, I've only had one tell me I wasn't getting well because I secretly wanted to be sick. Lucky for her we were on the phone so I couldn't strangle her. I guess I'm more assertive in that I'll dump a practitioner much more quickly if I'm not getting any results. I've yet got up the nerve to ask for my money back, though! I'd love to see the look on their faces if I did that. :D
Just discovered your blog through the usual labyrinthine method of surfing. There's so much to take in that I cannot digest it all at present but I shall certainly be back to read more. It's great to read such an intelligent and searching exploration of the 'dread disease'.
I really like last year's list of things you miss. It reminds me of one I made two years ago (http://lombredemonombre.blogspot.com/2005/03/i-am-i-miss_16.html). I like the idea of making another list of things that my incapacity has taught me or made me appreciate. If it's OK with you I may pinch that idea for my next posting !
Take care
I agree--it's a great post, and it's giving me some useful things to think about. So often, disability is so overwhelming, frightening, and draining; so often, my response is to fight it, resist it, and resent it.
But you're right, there are things to be grateful for. Fibromyalgia is why I learned to drive a car. I have learned to listen to my body a little bit more. I have learned to be a little bit more relaxed in my expectations for myself.
I suppose I can even be grateful for the intersection of fibromyalgia and DID, since it's making me very aware of the connections between mind and body.
I am learning far more about myself through these things, and it certainly spurs me to continue my mental and physical healing process more consciously, in ways that I might otherwise have spent my life avoiding.
Thanks for posting.
Heya Sylvia -- thanks! And you're welcome regarding the D-ribose. I generally rely on Co-Cure.org and Phoenix Rising to keep me up on the latest research, though I do read the Usenet group alt.med.cfs where a number of posters have talked about having a lot of good results with D-ribose. And since it's one supplement that has no interaction with Coumadin, and isn't too expensive (though isn't cheap either), I figured I'd give it a go after reading that paper.
And I definitely hear ya about having a hard time extending compassion to oneself. That's something I've always had problems with and this illness has forced me to take baby steps in that direction or go completely crazy.
Welcome Cusp! Read and pinch away -- and I promise to get to your site soon!
Hiya JA -
I am learning far more about myself through these things, and it certainly spurs me to continue my mental and physical healing process more consciously, in ways that I might otherwise have spent my life avoiding.
I think that's what I was trying to say in my "examined life" reason but you said it much more articulately. :)
My life before getting sick was all about avoiding the hard questions. Indeed, when my therapist first told me I might not be capable of working anymore (she was simply pointing out something everybody around me knew but I couldn't bear to think about) I was terrified of spending that much time alone with myself.
Every now and then I run into people who look at energy work (like the Cranial Fluid Dynamics stuff I do) as a cure for ME/CFIDS. While I won't discount that happening, I don't do it expecting to be cured. I simply want to take advantage of a gift I've been given -- time to look at what's going on inside. Without romanticizing how much this disease sucks shit, I know that without being sick, I would never have taken the time to focus on the emotional baggage I've carried for so much of my life.
Without romanticizing how much this disease sucks shit, I know that without being sick, I would never have taken the time to focus on the emotional baggage I've carried for so much of my life.
Heh. My emotional baggage had to pretty much whack me in the head repeatedly, despite the illness; but then, I am fortunate enough to only be fully out of commission about 4 months a year (spread out), so I don't have quite the isolated time to think you do.
Given that not all of my parts experience fibromyalgia in the same ways, there might be something to the energy work. But I doubt it's something that energy work alone would solve, or something that's "all in my head."
I keep thinking about the idiocy of doctors (particularly the study Sylvia mentioned trying to find out whether CFS is an "exercise phobia"!!). Just because something is connected to one's mind doesn't mean it isn't also deeply connected to one's body. The fact that many of my illnesses/disabilities seem to be symbolic (i.e., strep throat when I'm "swallowing" things I want to say) doesn't make them any less real as physical problems!
It will be interesting, in the next few decades, to see how well allopathic medicine is able to adjust to the idea that mind and body are actually pretty much the same thing....
I keep thinking about the idiocy of doctors (particularly the study Sylvia mentioned trying to find out whether CFS is an "exercise phobia"!!).
Oh oh that reminds me! I meant to share my favorite Moronic ME/CFIDS Research Study when Sylvia mentioned the "exercise phobia" study (which, unfortunately, there have been at least a handful - ugh!). According to researchers at the University of Hull in the UK, chocolate will relieve symptoms of ME/CFIDS. No joke.
Now, I frequently enjoy a bit of good quality, high cacoa content(70%), fair traded chocolate. But I can tell you, it never seems to make much difference. I dunno. Maybe I'm just not eating enough or something...
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