Friday, August 10, 2012

What happened to Natty?

As it's my blog's birthday ("does that mean there are spankings?" A. asked hopefully when I mentioned it to him the other day), I figured it's as good a day as any to post a brief update since my last post was over a year and a half ago. Plus, it might be interesting to see how many of you dear readers still subscribe to the RSS feed (I would have dropped me ages ago). Regular readers can probably guess rather easily as to what has caused the silence (and all the new visitors have had a big clue in the opening sentence of that last post from ever so long ago). Even in the giddy, Neurontin-fueled days of early 2005, I only had the energy to post once every week or two. With each passing year as I became sicker, the number of posts grew smaller (with the exception of 2008 when a hormonal treatment gave me a burst of energy that translated into a burst of posts that summer -- until I quickly used up all that extra energy). I managed to squeeze out a handful of posts in 2010 until finally I could no longer post after January 2011.

Not because I wasn't thinking about spanking anymore. When you spend a lot of time in bed not quite asleep but without enough energy to sit up, you spend a lot of time thinking. In addition to solving the Israel-Palestine conflict, considering ways to bridge the U.S political divide, and deciding how I want to decorate my apartment once I'm well enough, I've also spent my fair share of time thinking about our favorite subject. Mind you, there's been far less fantasizing about spanking than at probably any time in my life since I was, say, seven (instead I've fantasized about interior design and pajama fashion). On better days I have found myself thinking over just how I'm going to beat A. the next time he visits or trying to remember every detail of a typical over-the-knee spanking with A., beginning with his usual polite command of "bare bottom, please" to his sweet sigh of "Okay. All done." But most thoughts about spanking have been on the philosophical and theoretical side, some inspired by the thoughts of other spanko bloggers I read occasionally (and for whom I felt an insane amount of envy -- not just because you were healthy enough to be spanked but because you could also write about it). For several months I kept a list of the posts I wanted to write when I was well enough. But as the months kept passing and the list required multiple pages, I quit keeping it. I suppose some amount of despair played a part in that decision. And some post-topics were no longer timely. 

As I began to improve this spring, I started the list again. Indeed last November, knowing that improvement was coming, I even started a similarly-titled post to this one that I worked on paragraph by paragraph to explain what had happened (believe it or not, you're reading the shorter version). I had just transferred care to a new GP who makes house calls, which meant I would be able to pay off a bit of my energy credit card that had been maxed out on my apartment building's renovation, my sister's wedding, and lots of trips to the clinic to get my INR checked each week because of so many medication changes. But as the balance came down and I finally had a little energy again, the temptation to charge activities to that energy credit card was too much. Now I'm maxed out once again and in the midst of a nasty relapse that I'm slowly climbing my way out of. The problem with this disease isn't so much that it necessarily leaves you physically unable to do things; it's that it beats the shit out of you afterwards. 

There's more to what has happened to Natty (that's actually spanking related, I swear!), not to mention, I'd love to hear about what's been happening in the spanking blogosphere over the last two years -- what do you think has been the biggest change or event?. But writing, believe it or not, is the equivalent of running a sprint for me, not to mention my heart rate monitor alarm (aka The Bossy Nurse On My Wrist) keeps going off.* Don't even get me started on what Nanny/Nurse Bea would be doing...you know, if she existed...

Thank you to all of you who have visited over this long dry spell. There will be future posts to this blog (and at the Punishment Book). I just can't say when that will be. But then, given my penchant for attention-whoring, it's not such a bad thing for me sit back and read what other people are writing rather than needing people to read my probably-not-as-profound-as-I-think ruminations. Since I'm easing my way back into the spanking blogosphere, maybe you can share your favorite blog or tumblr that you've come across in the last year and a half or so in the comments section. You know, in lieu of birthday spanks (at least for the time being).

One last thing: Reading the depressing ramblings of a sick woman can, at least for some people, feel like an exercise in helplessness (not to mention, is so un-hot and just plain boring). But you're not as helpless as you might think. There are things you can do for me and other people with ME/CFS (or other chronic illnesses, for that matter) -- plenty of whom are also spankos: 
  1. Enjoy being healthy. There's a reason for the old cliche, I've still got my health. Once your health goes, everything else gets so much worse. And at some point, it probably will go since, according to a staff member at Independent Living Resources, 70% of people will be disabled at some point in their life (that is why we have programs for the disabled like Medicaid and Social Security, not because we're magnanimous people who care about the weakest among us). I know it's impossible to not take being healthy for granted. However at least, in this moment, be grateful if you can spank or be spanked. Leave your home. Take a shower every day. And not in the feeling-guilty-because-others-can't way. Simply really, truly treasure it. Every last sensual detail. 
  2. Learn more about ME/CFS. Appreciate that this is not just a benign condition of mere tiredness (and anyone who says that it is, is being disingenuous at best).  I think it's fair to say that every ME/CFS patient hates the assholes who came up with the name "Chronic Fatigue Syndrome" in 1987 because it minimizes almost to the point of invalidating the horrible reality of this disease (it was a trans-governmental committee, which, I'm sure you'll agree, explains a lot). While I'm not sure if "Myalgic Encephalomyelitis" is the right name for this condition, I do know that this is a seriously painful, debilitating and, in some cases, potentially life-threatening (I've had blood clots in both lungs) multi-systemic disease that deserves not only better public awareness but also a moniker that better describes its severity. I mean, imagine calling Alzheimer's Disease "Chronic Forgetting Syndrome." And then hearing everybody say "oh, I think I have that" because they sometimes forget a name or misplace their keys.
  3. You can donate money -- and/or your talents -- to organizations like Simmaron Research, the CFIDS Association of America, or IACFSME in the US or Invest in ME, the ME Association, or Action for ME  in the UK** that are working to understand this condition and develop treatments but are woefully underfunded. While ME/CFS is, symptom-wise, quite similar to Multiple Sclerosis and Congestive Heart Failure -- on which the National Institutes for Health spent  $121 million and $1.2 billion respectively in 2011 -- ME/CFS is routinely among the diseases the NIH spends the least on, coming in at $6 million that same year (and the year before and even less the year before that).*** Good research with double-blinded, randomized, placebo-controlled studies cost insane amounts of money (which is one of the reasons research about ME/CFS is often of such poor quality) and every last dollar helps. A letter to your congress-person or MP about the lack of funding couldn't hurt either.
  4. I can guarantee there is a patient in your area who would think you are the incarnation of Mother Theresa herself should you offer any assistance to him or her (for instance, as someone who is completely housebound, I can also guarantee that housebound person in your area needs something from the store). Indeed you probably already have a friend with a chronic illness, and an ancient blog post, "50 ways to help a chronically ill friend" (originally posted at a blog called "Living with Fibromyalgia," which is now private, which is why I've linked to it on a blog about gastroparesis) is great in its specificity. Saying "let me know if you need anything" is almost certain to get you off the hook of ever helping him or her out. But if you actually do want to help, offer something specific like, say, oh...going to the store (am I being too passive aggressive? Should I just come out and say I need a list of shit from Ikea?). Seriously though, never being able to leave your home is incredibly isolating and just visiting will make their day. (Though I am serious about the Ikea list...you know, if you're in Portland and happen to be going...) Consider contacting a support group in your area, your local county government branch of Aging and Disability Services, or Meals on Wheels if you're looking for someone to help. 

Well, aren't I a wordy bitch? But then, sick people often are. Partly because we have trouble summarizing ourselves well. But also because being sick -- whether acutely or chronically -- makes you more self absorbed. Not because you mean to be. It's an evolutionary response to a threat. If you think you would be more considerate if you were sick, pay attention to what you're like the next time you're in the Emergency Room and that heart attack patient is seen before your tuberculosis-esque cough. Yep. I know. Those nurses are total bitches for seeing him before you!

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*A brief explanation (a 10-minute video) of why using a heart rate monitor can be helpful for ME/CFS can be found here, as well as in an article here at CFIDS & Fibromyalgia Self-Help. The CFIDS Association of America has a longer webinar about post-exertional malaise (or post-exertional neuro-immune exhaustion as it's called in the ICC diagnostic-criteria) and its relationship to significant metabolic impairment in ME/CFS. CAA also has a four-part series on post-exertional malaise that is loaded with helpful information for patients and non-patients alike.

**Some of these organizations are controversial in the ME/CFS patient community and, in many cases, the criticisms have some validity. However the politics are complicated and often pointless -- imho -- albeit fiercely contested by those who think otherwise.

***ME/CFS affects about 1 million patients in the U.S. compared to 250,000-300,000 with Multiple Sclerosis according to the National Institute of Neurological Disorders and Strokes. ME/CFS costs the US economy between $17-24 billion a year in health care, disability benefits, and lost wages and taxes according to a DePaul University study (though would be higher if many of those ME/CFS patients who applied for disability benefits didn't get turned down and, of course, if we actually had treatments for the disease). Congestive Heart Failure rates are similar at 1-2 million U.S. patients and, while I'm unsure of its cost to the national economy, I imagine it is significant. 



12 comments:

Casey Morgan said...

It's so wonderful to hear words from you, kiddo. I think about you a lot and wonder how you are. I'm praying that you'll get fully well one day. In the meantime, it's a gift to have dispatches from inside your mind, whenever they come. Hugs!

Anonymous said...

You're back! That's amazing. Hope you get better soon.

Hermione said...

Hi Natty,

Welcome back! I've missed you. Please drop by when you have a chance.

Hugs,
Hermione

Jigsaw Analogy said...

It's so good to see you back, if only for a few words. I can't offer much reading material, because I haven't been up for much reading myself.

Disability sucks, full stop.

Thanks for the reminder to count my blessings--I might have to spend far too much time resting, but at least I can get out of bed for at least part of most days. I wish you could get at least that much!

Jigsaw Analogy said...

Also, that Captcha is fiendishly difficult to read. I clearly haven't been on Blogger enough recently.

Jen said...

Hiya Natty, good to see you writing again, even if it's only the one post! Also good to see you're catching a couple breaks here and there, like the doctor that makes house calls. That must save you a ton of hassle.

Not sure if you've read my blog, but I found a bunch of old stories from SSS on Google. They've been hiding them from me, but I found them, and put them on my blog. You MIGHT remember some of them.

Anonymous said...

What a nice surprise to see you write again! I hope you feel better :)

Natty said...

Aww, you all are so kind! Thank you so much for taking the time and energy to comment and make me smile (and especially for getting through such a tome of a post!). Hope to be more chatty soon -- probably starting on Twitter. :-)

P.S. You're very right, JA. This Captcha really IS a terrible pain in the ass. I wish Google/Blogger had something better to fend off spammers.

Indy said...

Hi, Natty! I've been gone more or less gone from the blogosphere for about 6 weeks and so didn't see this post when you wrote it. I'm just so, so glad that you've been able to write again, and I hope you didn't pay for all that effort too hard afterwards.

Hugs,
Indy

Kaelah said...

Hi Natty! It's good to see that you have written a new post. I'm sorry to hear that your health condition hasn't improved, though. I hope writing that post hasn't cost you too much energy and that you will find enough power to write more posts in the future. Hugs, Kaelah

Anonymous said...

So glad to see you. So sorry that you haven't been feeling well. And sending good thoughts your way! I sent an e-mail to your yahoo address. I interviewed you a few years ago for my dissertation and am following up. I hope you get it. I am not sure how else to follow up with you! Cheers. Melissa

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