RE: Goreans with Disabilities- Support, Advice, Info, V... - 4/13/2008 11:38:04 AM
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Karynn
Posts: 773
Joined: 6/8/2007
Status: offline
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Tal twinkle,
One of my coping skills has to do with online friendships, relationships and diversions. I use the world at my fingertips to distract me. At any hour of the day or night, there are times someone I know is online, in Ym or irc, or here, or somewhere. It's become a drug to me. It's one of the reasons my dearest "Himself" supports my time online. It's why he was willing to go to one of Malk's gatherings. It's why he's been supportive of so many things online that might otherwise raise eyebrows. Even with the world at my fingertips here, and some sense of distraction, I need closer connections and ones that aren't so intense. I find myself getting involved very personally with a few good women. One of those women who was in my "online" world 3 years ago is moving here to live today as in really live here. So it is never quite as solid a line for us, between offline and online friendships as it once was. But they all increase my ability to deal with pain.
On the other hand, negative energy, critical people, judgmental attitudes, and an overall surety that someone thinks they have me all figured out pushes the other direction. I've often said that until someone could walk in our shoes, it would be almost impossible for them to pass such judgement on us. I would not wish this life, this level of pain that I manage on anyone. I just avoid the negatives and focus on the positives, and enjoy the world that works with me to encourage health and encourage goodness and white energy. I have learned to turn off the darkness, and ignore the dark energy. It works regardless of where I met a friend, or if a person becomes a non-entity because of lost trust or false judgement.
I used to read. The fantasy world of books sufficed for many years, but those were the years prior to the narcotics. I slept through about 2 years, about 2 years ago. After that, I couldn't read more than a letter or a couple of pages of text online before I'd get confused. I miss the world of books. I've tried books on tape, but I still lose my place and get so frustrated in trying to recall what I've heard to keep up with the plot. I know in my head it used to be a strength of mine, and I put myself down, fuss at myself for being so inept, and end up spending negative energy there if I push it, so I've let go of that avenue. It's one I highly recommend to those who are dealing with midlevel or minor aches and pains.
As you said, it is nice if you can keep busy. We used to play canasta with people all over the world, and included, oddly enough, my online M/s and Gorean friends. At various times, we'd have slaves, submissives, and Himself in a virtual card room, and other times, it would be them ganged up against me. Unfortunately, if you can't get up and out of bed much, keeping busy really is limited to the net. That means it takes new and vivid things to stimulate the imagination and truly drug the brain. I've moved around to different venues for online games, and appreciate the link for the movies on the net.
I spend most nights here with Himself in the bed right next to me. The room has to be dark for him to sleep. He gets up at normal times (6 a.m.) for work, and has to sleep by 10 p.m. I'm so grateful that he supports me and our children, I can't even type it without getting emotional. I don't know what we'd do without him. He knows that sleep is very difficult for me. He works with me to figure out ways to work around the distraction of television, and the main screen that he's learned to sleep with still on is the laptop in bed next to him. The big television site and sound wakes him. So I'm really grateful for the movies idea. We're also looking at a USB tuner for HD channel tuning. Maybe I can watch old shows at 3 a.m. via that port.
I have been to a pain clinic, and given a pain scale. It's probably like many around the country, though not sure if it is an international way of measuring pain. My meds were at a point where I maintained a fluctuation between 5 and 8. I'd have one or two 9 days thrown in a month, the days when I could literally sing with joy at nearly being pain free. 1 is worst, scream territory, and 2 is often tears, and control but with very very much tension and need to be very still and barely coping. It isn't till I get to 3 or 4 that I can think of something besides the pain. I'm in a holding pattern. I see a new specialist at a clinic on Tuesday, 15. I've had it circled and highlighted on my calendar. I want to see if what they have to offer will avoid the next level of drugs. I fear trying to be hopeful. I fear wanting something, only to be disappointed.
At the moment, my pain scale has been fluctuating between 2 and 5, the other end of the spectrum. I'm supposed to go to an ER for pain shots when it is at a 2, but I always sit and talk myself out of waking up the family, or calling 911. I don't want to be such a hassle. I often sit in a quiet dark room and cry. It is the only time I let myself cry because tears create expense of energy and it seems so hard to have lately. Either the new clinic, and pain/coping skills 101 or 202, don't know what level I'm at as far as education, will help me shift those numbers on my own, or they are going to introduce morpheine as a permanent part of my pain cocktail. I'm afraid of the effects of that addition. I've already slept through a few years of life assimilating the addition of codeine to my body. Morpheine is so much stronger. And Oxycontin, in its more pure form, rather than oxycodone, where it's a blend of several drugs.
On one hand, I know that the meds change is necessary. Living within the 2-5 realm constantly is exhausting. And I finally fall asleep, till I have to shift position. I'm sleeping in 3-4 hour increments around the clock. Those who help me with coping skills both on and offline worry for and with me. But I don't want to sleep yet. My son will graduate from school next year, and then the second one will in 2 years. I keep wanting to put it off jsut a little longer. I'll be 40 this fall. Surely there is something that will intercede between now and those 2 years time passing.
The last thing I'll comment on is Maahsatti's suggestion for prayer. I find that though my faith journey has become something very private, vs. the very public life it was in my 20s and early 30s, I depend on it a lot. I also depend on others meeting my children's spiritual needs. I was a Youth Pastor for several year in our 30s, and young worship leader in my 20s. We just have always been involved in others' lives and then, suddenly I found myself alone and often on my own, alone with my vision of the great Creator. I think that any sort of affiliation with faith and focus helps those who are ill, whatever it is that you believe. Faith gets us from day to day.
I hope that things improve with you as you wait out your next few days. I can only say that I relate to it so well, waiting for medical procedures, tests, blood work, before this or that step is taken, and in those days you wait, it feels like it will take forever for another calendar day to pass and another, till you finally arrive at the day to make your appointment. For me, I'm putting hope in the 15th, Tuesday. I will hope for your appointment to hurry as well. I've been waiting on mine this time for a bit more than 3 weeks, and were I not to have a coping team with me, I'd be insane for sure by now.
Maybe I already am insane. That's alright too.
My best,
K
_____________________________
In all things, to thine own self be true.
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