Where Have I Been? I'm Not Sure

Last post, which was quite awhile ago, I promised to contemplate and then post the aspects of my illness I regulary disown. I thought the self-honesty would be therapeutic; I hoped the list might include sights and insights into my illness which others might benefit from . One major conern is memory loss. I've had a tough fall, emotionally. I forgot about my promise here. I forgot I have a blog. I float from here to there, from activity to activity, from hour to hour and day to day. It's a more pleasant existence than I have had for years. As there are fewer and fewer reminders of what normal people's lives are like.

One thing among many that remain, because I am still more intact than not, is the desire to tell stories. So I am going to procrastinate. Don't you know? The impulse to create strikes at the same moment as the impulse to hold back.

The List

For the benefit of other adult mitochondrial patients and Chronic Fatigue Syndrome patients.

As I promised previously, I set out today to list that which I am in denial about. That basically means everything. Because you cope and you cope and you cope and life begins to seem normal like that. You don't sit around pining for the good old days--which ones were those? So I at least convince myself that I am not that different from other people.

Here are my symptoms, problems, illnesses, signs, pains, etc.

I wrote that a month ago. I've been busy since then. I have no idea who reads this blog, but someone is. Just for kicks I'll publish the list as it comes out, uncorrected. The beginning was written before. That section ends with "generalzid eclmc" I have no idea what I meant. Typically when my typing is that bad, I am falling asleep.

INSOMNIA

sleep
food
time
cncntraion
memory
executive fuction
impulse control
hyperfocused
disorganization
personlaling
generalzid eclmc

my illneses and symptoms:
mitochondrial disorder, complex I with involvement of comlexes 2, 3 and 5.
Chronic Fatigue Syndrome
COMT defect
neurotoxin syndrome, probably to be redefined as biotoxin syndrome.

today: you know why I haven't finished this list? This entry is a huge bore. The truth is the list is a huge bore. I think I'll just continue as I was. I'll put a bunch in the tags so hopefully other patients can find me.

Maybe my most important post ever

Sometimes the simplest thing to do is to make a list.

I love to make lists. Writing things down helps me remember them. Since I am getting increasingly forgetful, however, I lose my lists. I forget my lists exist, so I start over. My lists are proliferating. I have several I recreate repeatedly: immediate to do's, long-term things I hope to get to and never will because I do not really get much done, fantasy lists that even healthiest person could not ever accomplish in several lifetimes, .lists of routines, lists of supplements to take and other things doctors want me to do, lists of books I'd like to read, lists of projects I've started. So many copies of the same thing. Because on Tuesday I don't remember the system I set up on Monday.

Which leads me to the reason for this entry. Supposedly I am here to write about having an undiagnosed illness, yet that seems to be the one thing missing from these pages. The truth is that I don't consciously think about having a problem which other people no doubt share, and that I put my story on the Internet not to contribute to bloat but to be there in case someone else who needs the information I have happens across it and decides to read it.

Yet I find talking about my private life distasteful and many blogs self-indulgent. I have no desire, as well, to regurgitate the news findings on my health issues. Subscribe to Google news, go to any of many websites, take it all with a grain of salt but notice trends.

I have to backpedal for a moment and say why I am going about this entry today. We all operate under  a variety of models of the world, and through these models all our sensory input is filtered, so that what we perceive reinforces what we've decided already the world is like. It is possible to change models, as when someone moves to another country and embraces its ways, or when someone changes religions. Our minds are too puny to comprehend every single thing we encounter. So, the models and their filters are a necessity. Nonetheless, they constantly need updating as our experiences refine our world view.

It has been my observation, and that of many before me, that the mind often does not want to accept facts, including our own experiences, which threaten our world view. However, we welcome thoughts, experiences, relationships, which reinforce what we already know. And by " know" I mean "think we know," for it is impossible to know the whole truth, ever.

When an overwhelmingly important truth enters our lives and threatens to shatter our world view we hold off, different people to different extents. And to the extent we have a disconnect between the world as we know it and the world as we are willing to see it, we become swaddled by the truth. It is screaming to get our attention. We are, metaphorically, going 'la la la" with our hands over our ears not listening to ourselves. But if it is an important truth it will not go away, but insist itself upon you more and more.

This is part of my basic model of thought, that we think about things because we are trying to process them. Once they are assimilated we stop thinking about them. They become the past informing the present, not choking it to death.

My loved ones have made a point of telling me, as lovingly as possible, that I am stuck in a rut of talking about my illness. I tried the standard advice of turning away from repetitive thoughts and putting my head in a more positive place. Occasionally that approach has worked, but for limited periods of time. It's time to try something new.

A wise friend asked me to decide on my 10 top values. This is the kind of exercise that takes me several years to finish. In fact, it's one of those lists I keep making. Values are somewhat but not terribly dynamic. They change in response to your experiences over time, yet they also hold through most experiences because they are part of our world view. Part of what I call so close in front of our faces we cannot see them.

The world is round. No one thinks about that anymore. We simply know it is true and since our experiences reinforce that truth, we don't think about it. We think about things we don't yet understand. That's what the brain is for, right?

We don't think about our values for the most part, either. We simply live them. They are such an embedded part of our Selves it's difficult to even know what they are. Sure, you can make a list right off the bat. But try comparing that list to the way you actually behave. I'm betting what you think is valuable to you is in fact not running the show, with one exception. Humans are a social species and nearly everyone values and lives according to the value of love, family, friends, and relationships. Whether we do that well or badly doesn't matter. Almost all of us are trying to do it, and we make decisions based on maintaining our relationships. Breaking up, so to speak, is hard to do.

So I have been making this list of values, and watching myself live, and testing my list against reality. And in the last couple of years I've learned an awful lot about myself.

One of them is that (I think) my number one value is the Truth, not Love. I say that because if I am not being honest with myself or with my loved ones, our relationship does not mean much to me. In the larger scheme of life, I believe that if you are not standing in the Truth then everything else you do is a lie, or at least off-track.

We are actually going to circle around now and put all these pieces together. Are you ready, Sherlock? As I have written above, the following things are true, at least for me:
-I learn and remember by making lists
-as I watch myself beginning the same process of making lists over and over again I have to admit that my memory is getting worse. I don't simply comes up with bad systems for processing my lists, and I don't simply not follow my systems. I forget my new system even exists. And I start over.
-Conclusion #1--this situation is utterly failing me and needs to be fixed--radically
-Conclusion #2--it is time for me to have my memory and other cognitive functions tested.

-I talk too much about my illness
-I don't feel listened to about my illness, so I talk about it more
-my loved ones listen to me even less, because they have heard it so many times.
-the mind thinks about that which it has not processed
-Conclusion #3-my loved ones have processed the truth of my illness
-Conclusion #4-- I have not processed some truths about my illness
-Conclusion #5-- If I value the Truth and my Relationships, I am not living my strongest values

Now my brain is tired. This is the most I can write at a time, and it is more than most anyone will read. So I am actually going to admit the truth: I cannot sit for endless hours at the computer as I used to. I leave you here, then, and stay tuned for what surely you know is forthcoming:
Lists of the aspects of my illness I have not accepted yet.
Further truths reveal: most readers don't care about this list yet the list could hopefully help a few.

So later today or tomorrow or next week I will make this list and publish it here and clearly mark it so if you want to skip it you can. Making the list and making the list public is just the beginning of the process of acceptance and a new, more accurate world view.

Confidences2

Have I mentioned this is National Novel Writing Month? I believe I have. That would mean it is also National Doctors Tell your Patients to quit their Favorite Activities just like Last  Year month.

No NaNoWriMo for me, nope, instead I crashed

Nano friends however are going great guns. I'm very selflessly happy for them.

Confidences

I am just finishing Day 6 of National Novel Writing Month. Confidences is gelling into something more organic and more connected to my real life. I'm kind of liking it. I've had moments of fine writing and days of non-writing. I thought I was caught up on the accelerated plan--and it seems awfully easy. I thought I was at 14.000 words, but I'm at 12,000. I entered one section several times. Cooper and Ripley and the rest just might make an appearance.I'm off to dream land to wake up ready to write again in the morning. Good night, all.

in memoriam

So here on these pages you have the story of Cooper Crane. Now Cooper Someone Else. And I alluded to something but have been so preoccupied with this puppy, I never actually wrote it down. That's a mitochondrial brain for you. Hyperfocused on a detail, losing the forest for the one pine needle on your foot.
On September 18, 2011 the great and glorious Ripley, standard poodle of enormous love and laziness, holder-down of the foyer and sleeper-by-the-speakers, passed away from the details of old age. The end came fast. We hastened a miserable death by a few minutes. She lived more than a year longer than we expected, given her multiple health conditions. She is missed, a true queen among royalty. May she rest in peace.

unmuzzled

and living in a new home. It only seems fair to end the story. But there is no cleverly evolving plot with a nice wrap-up at the end. We did everything we could with our trainer. We believe but we cannot know that he could not accept an ill leader and it created unbearable conflict. I feel terrible that my mere existence caused confusion in a puppy to that extent. The older dogs are used to me. We tried a technique of ignoring him for a week, then his first real interaction with a human was a correction. We set him up so we knew he would act badly. I am told this is effective in most dogs. It was not effective this time. And during that week of not paying him any attention he began to harass the other dogs. I would have fought for him forever--which would have been a bad idea--but not at that price. He was getting better, but by smudges not even babysteps. And often he was wonderful. I began to fear we would find ourselves in a situation where he was unadoptable, and my health was suffering from the stress. Then, literally, a woman I know said she wanted him--the same day he failed the end of being ignored test. So now he lives with this lovely woman whom he minds and loves, and when she tells him no he listens, and when her other dog, who is much more dominant than my marshmallows, corrects him, he stands down. If serendipity is going to hit me over the head with a frying pan I am occasionally going to notice. So add this to the long list of things I can no longer do, be thankful I did the puppy no more harm and sent him off while he's still  young enough to adapt quickly, and think how peaceful my house is right now. Two sweet faces looking up at me seems meager after four. On the other hand, they are easy. I hate giving things up to this illness. While he was adjusting to his new home, I cried for four days. Sad, yes. Defeated, yes. Deflated, yes. How could I fail a dog so completely? No, my illness is not my fault. We already talked about guilt in my last entry. I don't take responsibility for my illness, but I do feel guilty at the cost I impose on others. I hear that with a hiccup or two Cooper is thriving. He must be so relieved to be in a house with a clear structure. I'm happy for him, and feel terribly cheated. His new owner described how beautiful he is when he runs. I smiled, and inside I thought, yeah, I know.

So that is the sad piece. The happy piece is the calm that has settled over the house. Yes, we've gone from four dogs to two in a number of weeks. But the house feels sane again. If I was making Cooper crazy, he was making all of us crazy.

It is November. National Novel Writing Month. A year ago my neurofeedback doctor told me to withdraw. This year she is encouraging me to stay in. Two of my kids are coming home for Thanksgiving, so my NaNoWriMo is going to be abbreviated. I'm ending the Monday before Thanksgiving, about 10 days early. To win, this ups my required daily word count to 2500. If I am close, I'll finish after the kids leave. If I'm not close I'm going to try something radically new to me. I'll give up. My latest QEEG shows marked improvement and still a lot of work to do with the neurofeedback. The writing has been easier than it's been for a long time. It feels good.

I'll post word counts and Cooper news when I can. As of last night Confidences is 6000 words of a novel,a  really disorganzied novel.