Wednesday, September 01, 2010

Dom Lord Something-o-ruther

I've decided that ME/CFS -- actually, ANY chronic illness -- is like a really jealous, demanding top. Not the sweet but strict sort like my beloved A., but rather like those doms who call themselves Lord Something-o-ruther and refuse to use safewords and say something is for your own good but really it's just to satisfy their own abusive sociopathology. The illness dom gives you an impossible list of rules (that he may or may not share with you) and if you fuck up in any way -- or even if you don't -- the Illness Dom will punish you. Savagely. And before you know it, you're never allowed to see your friends or spend time online because you belong to Lord Something-o-ruther and he jealously takes every moment of your time, every ounce of your energy, every breath of your being. The Illness Dom locks you in and takes the key with it, leaving you to watch as the life you could have drives off in a red pick up truck.

Okay that last metaphor I lifted from an old, haunting story Mija wrote about a girl who suffered this fate at the hand of her abusive top. I reread the story the other day after thinking how much I was starting to feel like a ghost-girl, albeit one who has had even less choice in choosing my circumstances. It's not just that the illness makes me feel like shit all the time, but illness also includes a never ending list of bureaucratic issues - appointments to make, transportation to schedule, prescriptions to order and manage, Medicaid, Food Stamp, and Housing re-certifications with receipts and letters and bank statements to sort through, Home Care Worker to hire, Home Care Worker benefits cut due to the state budget shortage, state officials to lobby, medical clinic's narcotic pain management policy changes to adjust to, decreases in opioid meds -- even though my pain has not decreased -- to adjust to as well, other meds with varying effectiveness to try, surgery to have, surgery to recuperate from (successful on both accounts), Home Care Worker benefits restored (yay!) meaning now a Home Care Worker to hire (but now without A.'s help), medical clinic refusing to relent on pain meds to despair over, more tinkering with meds (sleepy, nauseous), new Home Care Worker  (yay!) to train (oh please work out this time!), letters to be written to medical director and state pain commission, fewer pain meds to take, more and more pain to manage...

For the last month and a half, the bureaucracy has been like climbing a vertical face.*

Kink and any energy to write about it jumped right out the window after I posted that first of a two part post that I thought I would quickly follow with a second (I just knew that was going to happen if I posted the first part without having the second definitely done!). Lord Something-o-ruther didn't even let me post anything when the six year anniversary of this blog (August 10th) came and went (can you believe it's been six years already? can you believe it's only been six years given all that's happened?). A couple of weeks ago it did let me take my post-surgical pelvis/abdomen for a spin (like any dom, it only allows me to masturbate with its permission). I wanked and came with little pain - certainly none of that horrible, feels-like-I'm-ripping-something pain I had pre-laparoscopy. So, you know, very cool! But as the horrible, feels-like-someone-is-burning-me-from-the-inside-out pain that I live with every second of every moment of every hour of every day throughout my body (especially in my arms and legs) was increasing because my doctor was required to reduce my opioid medication, Lord Something-o-ruther had tied me up and locked me in the closet again.

Until this weekend. Natty came back. Mostly because my doctor was able to switch me back to my earlier narcotic dose -- but start tapering down again -- as well as try an increase in an anti-seizure medicine I also take for pain so that my pain has been back to being quite manageable for a couple of weeks. Sure, I also wanted to sleep more. But laying in bed in a drug-induced reverie was the first moment of freedom from Dom Lord Something-o-ruther I've had for awhile. I could actually think about something besides it. I could be little again. At first Michelle was having none of it. My grown up self was still climbing the vertical face -- which is clearly not an activity for kids.

Or is it?

I've been wanting to write about the dominance of my grown-up self (the real Lord Something-o-ruther?) versus my Natty self (along with the legion of other topics I've thought about while laying in bed -- alas, the dearth of posts is never because I don't have anything to say). And I don't know that I'll get into the full analysis I've been pondering over the last few months tonight. But as I've been vomiting out all my white-knuckled frustration of the last month and a half onto this Blogger compose interface, it wasn't until I wrote the above paragraph that I remembered how much I need Natty. Many years ago my therapist told me to treasure her. But lately I've wondered how to do that. Or even if I should do that. I mean, isn't she just this way I escape reality when I can't handle it? Isn't it healthier to just learn to live with life the way it is rather than hide away in some overactive part of my imagination? You know, embrace the present, yada yada yada (which is also what that therapist said)?

And then I remembered the last bit in that first post with which I began this here blog those six years ago about rediscovering Allie (proto-Natty) when I was first getting sick and disabled ten years ago.

I realized how much I needed her back. Her emotional energy. Her willfulness. Her playfulness. Her immature selfishness. I need her to feel the feelings my intellect has long ago explained away. To temper my endless caregiving with the demands of my own needs. To stamp her foot and say, “it’s time to play.”

I actually (with tongue somewhere in cheek) list as my occupation "personal care coordinator" as that really is what I do all day when I'm not sleeping or trying to eek out a social life online. And Personal Care Coordinator Michelle needs a break. She needs Natty to help her play. Especially as the coming weeks are going to be hard. Distraction is an important pain management tool and after next Saturday I'm going to need to use every non-narcotic tool even more than I already do (meditation, yoga, qigong, physical therapy, massage therapy, acupuncture, heat/cold, supplements, non-narcotic prescriptions, warm baths, guided imagery...). My doctor has me on a list to have my case reviewed by an Opiate Review Board, but I have no idea when that will be or if it will be successful. I feel hopeful that at some point we'll get me back to an adequate narcotic dose or find some other medication to help (not that we haven't already gone through just about every anti-seizure or anti-depressant that's also used for pain that my insurance will cover) for no other reason than I can't imagine being in that much pain for an extended period of time.

So Natty plays. A. gave me my first tele-spanking in months the day before last. It was just a handful of quick strokes and yeah, my shoulder was quite sore the next day (that's why a quarter of my freezer is devoted to ice packs!) but I'm hoping we'll be able to play some more over the phone this week. And, of course, A. and my illusory Nanny are already helping me manage my activity levels since overexertion exacerbates my pain and gives Lord Something-o-ruther an excuse to lock me away in a dungeon that's anything but a playground.

Hmm...Maybe that's another way Natty helps me with illness....Oh dear, speaking of managing my activity level, I've just got so carried away with my de-facto journaling here that I totally lost track of the time. Like, wandered away from the track and the field and have been following a butterfly so far into the woods that the roads no longer have those green street signs but wooden posts with numbers... 

*And just to make life even more fun than it already is, I found out last Friday my apartment building is being remodeled in November requiring us all to move out for a week. They are hiring third party movers to pack and move our stuff (which is good cuz I can't do shit!), but I'll have to unpack everything once they're done. All 1200 books, etc. that took months to unpack... ::sigh::

Note: September is Pain Awareness Month. If there is anything I've realized from this experience with the change in narcotic pain management policy at my clinic is that nobody with chronic pain in this country is safe from interference with their narcotic pain medication. I always thought that because I did everything right and I had a caring, competent doctor, I was fine. But not only is the War on Drugs locking away people who don't need to be and crippling us economically, but it's also keeping sick people from getting the treatment they need. Yes, pain builds character but chronic pain also atrophies the brain and may increase your risk of death from any cause by as much 49% - up to 68% if just looking at cardiovascular-associated mortality. (I keep meaning to do a post(s) on the science of pain and spanking...) The next time you see a story about prescription narcotic addiction, remember all the people who are are not getting their pain adequately treated (or treated at all) because of the overhyped fear of narcotic addiction. Yes, addiction happens (though to less than 1-2% of those using it for pain). Yes, narcotics will kill you if you don't use them right - as does my Coumadin. But like my Coumadin, the benefit for those in pain outweighs the risk and certainly the disingenuous moralization.

::stepping off soapbox and into bed::


Casey Morgan said...

This super-dom you conjured is so nauseatingly real; it scared me so much and made me want to cry.

Wish I could invite Natty on a vacation full of nice things.

You really do bear your suffering with dignity and integrity. I know that's no consolation, but it's true.

Please, God, make Michelle better so Natty can come out and be a real little girl.

Love, Casey

Serenity said...

I've now tried to (and failed) twice to comment and I've forgotten what I was going to say. Argh.

Actually, two things.

One... have you considered doing audio blogging, which I think you could do lying flat, thinking out loud, if you could set it up in a better moment?

Two... do you have some place to go in November when you're out for a week?

Three... I thinking serving Lord Something-o-ruther would be easier if you had a sister/brother slave to do the personal care coordinating. What I mean is that sometimes people need someone else to take care of them, and I wish you had someone to help with that, because while you wouldn't be *well*, you might at times feel like you had more time to function. Does that make sense?

Anyway, thinking of you, and hoping you got through the weekend all right.


Natty said...

Thanks, Casey. This post ended up being far more of a messy emotional dump than I had intended and it's nice to know I maintained some dignity with it! ;-)

I wish we weren't so far away too. I think Natty and Casey would have a blast.

Serenity: I'm so sorry you were having problems posting your comment! Was Blogger being bitchy? Cuz I'll give a right good kick if it was!

I've actually been trying to figure out a way to do some audio journaling. I tried using Dragon Speaking a few years back and it did an abysmal job of transferring my speech to paper, even after hours of reading the most banal business motivational writing imaginable. I believe my Mac has speech recognition software on it and I need to play around with it some.

An audio blog is a possibility, though it would end up being very different from my writing. I'm much less coherent when I speak. I think with my fingers and without typing my mind goes in a completely different direction.

Two - yes. They are putting us up in a hotel for a week. It looks like they are also planning to unpack all our stuff for us. But the more I keep thinking about it, the more insane it seems to move EVERYTHING out of our apartments when all they are doing is remodeling the kitchen and windows., that's a whole other soap box. Too many soap boxes at the moment!

Three -- Yes. While I don't talk about my topping A. in much detail per his request (he's not the exhibitionist I am ::grin::), when he's here, he does end up doing a lot of the day to day caregiving and giving the Illness Dom its due - or rather Princess Natalie what she's due. ;-) But yes, when he's gone, being sick on my own is hard work. I do have my home care worker for a couple of hours twice a week so that I and the apartment are not complete pigsties. Yet I fantasize about Nurse/Nanny Bea because she would indeed be really helpful, not just for making me stay in bed, etc. but just helping with basic things like, making breakfast, or helping me wash my hair, or manage all 20+ medications, or setting up medical appointments and transportation to and from.

So, yeah having someone else to help with the basic self-care tasks would indeed free up some energy to live. Finding such a person beyond my 4-5 hours of home care work a week is another matter. One of my old home care workers suggested asking for more hours, but given that the state can barely fund the hours I have, I'd feel a bit Oliver-ish.

I've joked a bit about getting a sissy maid and A. certainly wouldn't be adverse to me having a female slave. Yet I don't think I could top anyone besides A. and frankly that sounds like more work than just doing it myself. But...yeah. I do need someone else to take care of me. Desperately.

Yet I'm very blessed compared to what a lot of people in this country are dealing with right now. It takes YEARS to get disability or SSI. Most cities aren't even accepting people for their 4-8 year-long waiting lists for public housing or Section 8. When I first applied for disability, I asked my case worker (who was getting me Food Stamps) what I was supposed to do while I waited the 2 years for SSI (it's now 3+ years). "Most of my clients are homeless," she replied. This is what America does to its sick people, folks.

But I have a soft bed. A wonderful apartment (nine years later) -- with an amazing view to boot! Someone to help me 4-5 hours a week. A very small but ultimately adequate income to meet my needs.

Crap. I think I've been typing this reply for over an hour and probably have said absolutely nothing of significance! Time for bed! ;-)

[After spending the last half an hour just trying to post this comment, I'll say yes, Blogger is being a BITCH - ::kick!::]

Pleasure My Spot said...

Well wishes.

mysirensong said...

Oh Michelle, I sat here and cried as I read this. We have too much in common to be so very much NOT in touch ... my fault, seriously.

In September I got walking pneumonia and I have had URIs of some sort or another, and multiple problems with asthma, since then. I've missed weeks upon weeks of work and my new boss had the good sense to tell someone I needed FMLA protection, so that rocks, but they can't find the CAUSE. I've had croup, an infection of my trachea, bronchitis, a bruised sternum (from coughing) ... And every single time I go in there for yet another appointment, my bp is higher. This last time, it was 153/119. The doctor didn't comment on it and I don't want to bring it up but I don't understand why she's not mentioning it. I don't have White Coat Syndrome -- never have. The last thing I am is scared of doctors -- hell, I told a friend she could practice getting an IV started on me as I have no fear of needles whatsoever. But when I read the part in red at the end, and thought about how even when my 5/325 TIDs (Perc) don't seem to work, I do NOT say anything because I'm so afraid they'll freak out and stop prescribing at all. And then what will I do?

ugh .. I have to stop. I'm sitting here sobbing. So, did they figure out that FIBRO is caused by the retrovirus, too? Does that mean they're eventually just going to be able to put me on a cocktail and stop me from dying from this? I feel like my life is being stolen away -- though I hate to say that to you because it's not nearly as bad at this point as you have it with the CFS -- but sometimes I don't believe I can keep going for years and years if something doesn't stop this from progressing. And I want to shout a big FUCK YOU to everyone who says this does not progress ... like hell.
I'll make a point to be a better friend. <3,