I was chatting with Annie of "It's Time to Get Over How Fragile You Are," and somehow it came up that I had tried a magnetic mattress pad for about a month while trying to find a treatment that would help me sleep and give me more energy. I know a lady who swears by her magnetic bed, and she let me borrow a mattress pad she had that was the same technology.
I'm glad it helped my friend, but for me, it was a total no-go. I could feel all the spots where the magnets were and it just felt really uncomfortable. After a month I decided I was actually sleeping worse (which I didn't know was possible...), so I gave this treatment the boot.
Anyway, it got me thinking about all the advice I've gotten from well-meaning and often times informed (and some not-so-informed) people over the years, and I've gotta know...
What's the WEIRDEST piece of advice you've been given regarding your illness? What's the weirdest treatment that you've actually tried??
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.
After my diet change, I intended to write a post about what I could and couldn't eat. I was going to take pictures, make comparisons between my old stand-bys and my new fill-ins, joke about my wine and sugar addictions and my subsequent withdrawal symptoms... you know, the works.
One small problem: I don't really find it that interesting.
I think that I'm at that phase of my blog journey when I feel the need to define this blog and its purpose. "This is a health blog," I told myself. "This is where I blog about my health and all my screwy symptoms and my many doctors. This is where I find other patients who get it and we talk about how our lives have been changed by health."
But really, I didn't start this blog to talk about my health, or lack thereof. I started this blog to talk about everything that was affected by my health. MY LIFE!
I went to church this past Sunday for Easter and the pastor said a really great thing in prayer that stuck with me. He told us to thank God for our story, no matter how hard that may seem sometimes. And just like that, I was able to see my life a little more clearly. This isn't the end, and it's not the beginning, but it's part of the story, and that's okay. If God is the author of my story, then I know it will be beautiful. I just have to trust Him and live my life and own my story!
I've been slowly going through the diaries of Anais Nin, a French author who died in the 1970s, because I just love the way she uses words. She croons her life story to you. Anyway, she's training under a psychoanalyst in New York City named Dr. Otto Rank, and she's describing his patients' troubles:
The sick came endlessly, each one who was cured brought father, mother, sister, brother, friend. They multiplied in an alarming degree. Was this a new illness, born of our own times? No time for love, no time for friendship, no time for confidences.
Rank touches all things with the magic of meaning. Those who come to him are like the blind, the dumb, the deaf. When he discovers the "plot" of their life, they become interested. This interest saves them. This plot created by the unconscious slowly reveals itself to be more interesting than any detective story. Rank uncovers the links, webs, patterns. It is endlessly interesting, full of surprises.
Then, after Anais begins to see her own patients, she makes the following remarks:
Analysis accelerates growth, maturity, but changes come more slowly than insight. The patterns have deep roots and take time to change.
I avoid all clinical language because as a writer I believe language has power. I also take much trouble to describe each character, each motivation as unique, not to give the patients the feeling of being classified.
Science may heal, but it is the poetic illumination of life which makes my patients fall in love with life, which makes them recover their appetite for it.
This is what the blog is really about for me: falling back in love with my life. Accepting my story and starting to do a bit of the writing of it myself. Extracting the meaning from my days so that this time of my life will not have been in vain.
What about you? If your life story had a genre, what would it be and why? What would it take for you to fall back in love with your life?
I don't have time to post much, but I realized I hadn't posted in 10 whole days, so DON'T WORRY, INTERNETZ FRIENDS! I'm still alive, and I'll post later about the foods I can eat that replace my old comfort foods. I'm still following along with all of your blogs, and I have much love for you all!
My new favorite humor/life blogger, Lilu, started this blog trend called "TMI Thursdays." Now, to preface this post, this is not your average TMI Thursday post. So, Lilu, I adore you and read these posts voraciously, but you should probably not share this one with your readers, seeing as illness tends to make people way more uncomfortable than lewdness, drunkness, and STDs... put together.
Sad, but true?
Anyway, in mild concurrence with the spirit of the event, I must confide that I am slightly drunk. Yup. Had multiple glasses of a really classy wine with the moniker, "Cat Pee." I'm a *classy* gal, yessiree.
I do not drink that often since it sometimes interferes with my many, many meds. You guys probably understand this.
But, you (hopefully!) also may have read my post where I shared, among other things, my undying love for anything Italian. This love DEFINITELY extends to wine. And pasta. And really good pizza that you can only find in Italy. And clothes. Oh, and did I mention, WINE AND PASTA.
(Sigh).
Thanks for the many congratulations on my recent Lyme diagnosis. I too am thrilled to have an answer (though, as we know, in medical things, it may not be the only answer) and a clear (well, sort of) treatment path. But, here's the kicker:
Once again, there is no quick fix, no magic pill, no easy out. The goal here is to put the Lyme into remission, not cure it completely (since that's not possible). That means that many of the changes I have to make (on top of the MANY changes I've already made) have to be permanent. This isn't a "I'll do this to get better, then go back to my normal life" type of treatment.
Anyway, Lyme bacteria feed on sugars and carbs, much like myself. In order to get rid of these Lymie nuisances, I have to eliminate sugar and carbs from my diet. That means no pasta, no bread, no coffee (except decaf, sugar-free), no soda (same as coffee), no ORANGE JUICE (which I drink every morning) or fruit juice or sugary fruits of any kind, no cereal, and, most devastatingly, NO WINE WHATSOEVER.
*Sobs softly.*
The addition of antibiotics makes this new diet even MORE important since the antibiotics will target all bacteria, good AND bad, and I want to give the good kind more of a fighting chance than the bad, Lymey kind. Also, long-term antibiotics can lead to really gross side effects like thrush, where bad bacteria grow all up in your mouth and turn your tongue beige, then they go into your digestive track and cause all kinds of nasty business. Not cute.
(Oh yeah, that bacteria grossness? That's just the beginning of my TMI Thursday).
In addition to this grossness, I also have something called Babesia, a co-infection for Lyme disease. It's a parasite, ya'll. How gross is that? It's born in the tick, moves through the deer, my cat, and finally onto me, where it gestates and breeds and junk. SICK. So I'm going on treatment for that as well, and my new diet will help there as well.
Some of you that have chronic illnesses that severely limit your diets will probably think I'm being a big baby, and I totally am. But I've given up my lifestyle and my independence already. I've been lucky enough to not have to diet for weight reasons, and when I've eaten healthier the last couple years, it's definitely been fruit-intensive (now off-limits).
So I'm whiny. A bit whiny. But I'm going to try to make this my last whiny post. I'm already looking up great recipes on Lymenaide; I'm remembering my love for Lyme-ok'd foods like goat cheese, avocado, and tofu; and I'm currently having my last big hoo-rah. Yeah, you heard me right. I'm hoo-rah-ing. I don't start antibiotics til tomorrow, so today I had a sub, pasta, and a ton of wine. I also had a Starbucks latte and a regular cherry coke. Basically, I ate terribly today, because baby, this is my Fat Tuesday, and my Lent's going to last a long frikkin' time.
I'm still so grateful for my diagnosis. I'm 100% willing and ready to go every mile I can. Nothing is equal in worth to gaining back my life and my freedom.
But...
Gah, this wine is GOOD.
Lots of drunk-punch-love to you all, Robyn
**What about your illness grosses you out the most? Feel free to share... we know how it is. :-/
My probable prognosis at tomorrow's doctor's appointment:
Damn. Well, at least we tried.
I was supposed to have a counseling appointment this morning, but woke up a) VERY late, and b) a dizzy disaster. I almost fell down the stairs before realizing that getting to my appointment in 20 minutes was so not going to happen. I called the secretary to let her know... and that's how that poor woman took the brunt of 3 weeks of my mistreatment at the hands of people who control my fate.
The conversation went something like this:
Secretary: Hello?
Me: Yes, hi, I'd like to postpone my appointment for today. I'm really not feeling well, and I'm not going to make it.
Secretary looks me up in computer.
S: Plus your appointment starts at 2, and you're not here.
Me: *Awkward silence.*
S: Well, there's going to be a late fee you know, because you should have called us 24 hours ago. And the counselor's booked for the next week, so I can't reschedule you til next Tuesday. And you really should have--
I now may or may not have interrupted her by bursting into tears like the well-medicated, composed adult that I am.
Me: Can I just say something? *sob* I can't control when I get sick. I don't know it beforehand. You are about the fifth person this week (please note that it's only Monday) who has been unsympathetic toward me, and I would just appreciate it if you could at least try to not act like you don't care. *blows nose.*
S: Oh my gosh, ma'am, I'm so sorry. I really didn't mean... I think you misunderstood... it's doctor's policy, you know, it's not in my control... I was preoccupied...
Unfortunately, by this point I was too focused on re-controlling my crazy to properly apologize for the outburst that truly belonged to a certain middle-aged man who hates sick people (again, an exaggeration... I'm trying to be entertaining here, people, sheesh).
So there you have it. I am now phone-bombing people with my emotions. But I learned a valuable lesson today-- the customer is *not* always right, but the customer who cries sure as hell is.
(Also, sorry to those of you who read my other blog too... yes, I reused this picture. I cried today, people. I'm exhausted!)
Wishing you all better luck than me with the rest of the world,
Robyn
I'm glad it helped my friend, but for me, it was a total no-go. I could feel all the spots where the magnets were and it just felt really uncomfortable. After a month I decided I was actually sleeping worse (which I didn't know was possible...), so I gave this treatment the boot.
