More often than not, I feel kinda embarrassed or even ashamed mentioning “progress” I’ve made with my mental health. This is not usually because I’m afraid to speak too soon. Sometimes, though, I’m afraid my “progress” will be stolen from me. What I mean is that it will be denied or made trivial. I’ll mention an example of progress robbery and you’ll see exactly what I mean in a flash. In brief: I was 26 and wicked discouraged an no way did I expect help right at that moment. No one listened, no one cared, and no one that was treating me knew anything about eating disorders or cared that I had one, so I’d long since stopped talking about it, and given up. I had no faith in the doctor. He decided to give me Lithium. I took it. Right away, my eating disorder improved. Nothing I had tried even compared to how much this pill helped me. I said to the doctor, “This Lithium has helped me very much. It feels like a miracle.” He said, “This is not true. Lithium doesn’t work that fast. You couldn’t possibly be better. What eating disorder?”
So theft is one reason I hesitate to reveal progress. I have had progress denied and stolen from me many times. Folks don’t see the change in me even though I feel it deep inside me and know it’s there, or they claim it’s not possible. Well, it’s my body. What I feel is what I feel. You don’t feel what I feel. What in fact isn’t possible, Doctor, is for one person to feel another person’s feelings.
The other reason I hesitate to mention progress is due to embarrassment. This goes way, way back, probably deep back to early childhood. Oh, I could probably go on and on about progress with toilet training and go into making poops and getting praised up and down for my so-called progress with body function, maybe write an entire essay on that alone. But I won’t.
I think I will indeed focus on my parents, though, but at a much later time in my life. I’m talking about a time when they were overly involved in my mental health care. I would say that it went so overboard that they were privy to unlimited information about my case from my psychiatrist and therapist. At any time, they could call these people and discuss my general welfare in detail with these people. Not only that, but these people shared stuff with my parents that they never shared with me, stuff about future plans for my care, for instance. My parents could ask any question they wanted and they’d get an answer. In this sense, my treaters and parents together considered me a child who didn’t have any capability or responsibility when it came to my own care, or need or desire for knowledge.
So you get the picture. Little Julie with a room full of big adults. The playing field. The doctor asks, “Julie, can you tell us how you are feeling?” My parents on the edge of their seats, ready with their pom-poms and confetti. I wait a minute. I take a breath. I say, “I think I’m feeling…I’m feeling…I think I feel good today.” My parents jump for joy. My mom waves her arms and cheers. “Yay Julie! Rah rah Julie!” And then the parade starts. Posters are erected for Julie. “Look at Julie! We’re so proud of you! Rah rah! Let’s all go out and get some slurpies and stuffed animals! Everyone, come and see big Julie, all better! She is the star of the show!”
So you can imagine.
Okay, so say my response is that I feel bad today. Here’s what they say in response. Their faces fall. They droop. They say, “Aww. You lost. Let ‘s kiss your boo-boos and make them all better.” Certainly no raised arms. No parade. And to the doctor, “What’s wrong? Give her more pills!”
So this was my cheerleading team, for years. Yes, they rubbed it in. They rubbed their own noses in it, saw it so up close that they saw nothing else, and nothing else mattered. They were short-sighted. They were unwise, and they were fools. I was unwise as well to let all this continue for as long as it did. What I wanted to tell them was, “Hey, ‘This too shall pass.'” I saw as well as any of them there that not only did life have its ups and downs, but that life was more complicated than just having a bad day or a good day.
Finally, I pulled the confidentiality card, and stopped allowing my parents to participate in any way in my care. For many years, I continued to argue fruitlessly that to rate my “mood” on a scale of one to ten, as doctors and other mental health practitioners often insist, is trivializing “mood” to the extreme. The same goes for rating how my day went. How can I put a number to something that is qualitative and not quantitative? How can I put a number to something that has many, many dimensions? This is like rah rah. This is trivializing. This is like reducing to “good” or “bad.” This is saying whether I won or not when I didn’t win or lose this day. I breathed this day. I might have felt like a winner or felt like a loser, but that’s only one of the many, many thoughts and feelings that I have had when all is said and done.
So I hesitate to mention any progress. But right here right now on April 10, 2012, I do feel progress is happening. I am fifty-four years old and I have spoken about some of this progress and repeated some of it over and over and over. Some of it I haven’t mentioned out of embarrassment, fearing rah rah, fearing that someone (real or imagined) will pounce on it and steal it.
When I was in the hospital, I used to write stuff down, and I’d have these meetings with the doctors and bring my writings with me. Nine times out of ten…well, no…just about always, no matter how much or how little I’d written, they’d sit there and say, “Say it in your own words,” or they’d say, “How about summarizing.”
I have a couple of things to say.
These are my words, first of all.
Secondly, this thing that I have written is a summary. That’s why I wrote it in the first place.
But before I even had a chance to say that much, most of them had already sized me up. They hadn’t even read my chart. But they’d flipped open a page, written their orders, and said they had no more time for me. Case closed.
Now and then, I’d walk into these meetings with something written in list form. A tiny piece of paper gets a more positive response, and I’m more likely to get more of their time, maybe even more of their attention. Sometimes, I wrote progress lists.
Here is my progress list for April 10, 2012:
I am forging my own path in regards to my care.
I have rejected “traditional care.”
I have rejected inpatient eating disorders treatment.
I have rejected tried and rejected the one “eating disorders” partial program that I tried.
No residential care takes “public assistance” insurance (Medicare, Medicaid) and I have rejected these forms of treatment.
I choose to stop therapy.
I have chosen to taper off as many psychotropic poisons as I can. I started this process and have done well.
I chose to stop DMH services.
I chose to end “weekly weight checks” and cease weight-centered eating disorders treatment.
I chose not to follow a traditional “meal plan.”
Without hesitation or doubt, I know that the above decisions were and continue to be the right path and my true destination.
Where am I headed? I am forging my own path now.
No one tells me what to do.
This means I make mistakes.
When you are doing “traditional care” with a “team approach,” mistakes get made, too.
The difference now is that I am the one making the mistakes.
I and I alone am responsible for the mistakes I make.
I own them.
I forgive myself, pick myself up, and move on.
Sometimes, it takes a bit to get going again.
Here are some very concrete examples. I will try not to get too embarrassed over this.
I have experimented some with my medications.
And if you are bored with this gibberish, skip this paragraph
And go on to the next one, okay?
Lowered my Trileptal. That didn’t work out too well, so I put it back up again.
But I seem okay on half the Lamictal I was taking. Better, in fact.
Naturally, it’s all experimentation.
Of course I do shitloads and shitloads of reading and re-reading of
drug inserts and interactions and titrations and stuff I read all over the place about side effects
and potentiation (which means when one drug makes another drug more effective than it normally is)
and weird things that happen when you get off a drug
that the drug companies hid from the public.
What’s most important is what happens to me
How I react. How I benefit or don’t benefit or react badly to a drug.
Lamictal kept me awake at night and gave me double vision.
I used to take 600 a day. It says clearly on the insert that is included with the original bottle
That for “bipolar,” doses above 200 produce no further effect
While in certain research, higher doses are claimed to have effect…hmm….
I have lowered my dose from 600 to 100. I feel much better, can sleep finally,
And finally, finally, when I look at Puzzle, I am less puzzled,
Because I see my one dog, and not two.
I can’t afford twice the vet bills.
I am off my antidepressant because it stopped antidepressing
And stopped stopping my bingeing.
I’m hoping that my vital signs will normalize.
I’m hoping that my breasts will return to normal size
And in so doing, maybe I’ll get some relief from body dysmorphia
Which I think is caused by increased breast size from galactorrhea
(this time I think I have it spelled right)
Which is increased milk production, a side effect of the antidepressant.
And I am also successfully reducing my Topamax.
It, too, has pooped out.
As used to prevent bingeing, it doesn’t work for years and years, typically, I’ve read.
For whatever reason, Trileptal seems to help me
So I’ll stay on it.
Enough about meds.
And here’s a bit about food:
I played around with what types of food I ate
What types of food I purchased
What types of food I could afford
I made decisions based on food price
I made decisions based on nutritional value
I made decisions based on how long I could store a food
Where I stored that food
How I stored that food
What quantities I would have to purchase
Whether it contained sugar
What form of sugar
I asked myself how much sugar I wanted to consume
I asked myself about how different foods made me feel
Both physically and emotionally
Whether a food made me feel satisfied
Whether a food tasted good
I thought about flavor
What went with what
I thought about what foods felt scary to me
For any reason.
I knew that I didn’t have to justify to any other person
Why these foods felt scary.
I noticed that when something was labeled “natural”
This word, “natural” was pretty much meaningless.
I want to buy food that I can bring home on the bus
Or carry on my back in a knapsack.
I asked whether a food contained a whole ton of salt
I asked myself about processed foods
I decided that diet soda was a waste of food stamps
Which really I already knew
I no longer buy coffee at coffee shops, ever
My own is better
I noticed that processed foods were more expensive
I noticed that foods that were made already
Were much more expensive
Than if I bought the ingredients and put them together myself
I considered the risk of ending up bingeing on that food
I made decisions based on what would make me fat
How many calories were in it
Yes, I admit this.
I found myself suddenly very, very broke
And go to food pantries now
I have learned a lot about food pantries
It takes practice.
I want to write about the unique experience
What it’s like to have an eating disorder
And experience a food pantry.
I have learned what to choose in canned food.
And what not to choose.
Yes, I still binge.
This has changed drastically.
I no longer spend…how much of a bill was I running up?
It is unthinkable.
We’re talking cash. Well, no more.
I don’t do sugar binges anymore. This is amazing.
Don’t ask me how I made this change. I do have a credit card and I very well could use it,
But I don’t.
I don’t run out and buy cake or ice cream or candy or peanut butter
I don’t eat a stick of butter by itself
No donuts or pastries or muffins or bakery stuff
No pretzels or chips
No cheese or cookies
Nothing delivered or from a restaurant of any kind
Why is this?
It is embarrassing and awkward buying this stuff.
I can’t afford it.
It’s damn embarrassing using my food stamps to pay for it.
It makes me feel very, very sick afterward.
Pasta (not that “ramen” shit, which tastes like pure oil to me).
Canned soup on sale.
Canned veggies on sale.
Any quick-cooking, very inexpensive grain, whatever’s on sale.
Canned pumpkin (I get a lot of coupons for it).
Fresh veggies (not expensive ones).
I have almost broken my tendency to dig into Puzzle’s food.
I am just about dog-food free.
When you add it all up
And consider everything
I have spent time eating nothing at all for days.
I have spent time bingeing for several days in a row.
These two things are the same as before.
But what I binge on has changed,
So financially, I’m not dropping hundreds of dollars a month
And the other thing that has changed
And here I’m a little embarrassed to admit this
Is that I have spent a few days
Actually eating meals.
This is brand new.
No, not real big meals.
It’s kinda scary.
No, not freaking “meal plan”
An approach I did indeed try, over and over
And it never worked for me.
I am forging my own way.
I am experimenting.
Seeing for myself and my own body
What works and what doesn’t work.
I will continue what works and stop doing what doesn’t work.
“Meal plan” didn’t work.
I would rather do something that not only works
But is inexpensive, healthy, practical, and logical.
I see progress.
I see learning from mistakes.
I enjoy learning.
I am not embarrassed about learning.
I am proud to share the fact that I have learned new things with others.
I am proud to say that I have found things that have worked.
I am cautious about suggesting to anyone else to do what I am doing.
I encourage others, though, to look around, to keep an open mind
And to realize
Although my path may be a little bumpy
You can trip on any path, even one that is well-trodden.
I carry a flashlight.
I bring my dog with me.
I pick up after her.
I pick up
I have a couple more things to say, and then I’ll shut up.
These are my words, first of all.
Secondly, this thing that I have written is bit longer than a summary.
There is a place for summaries, and there are places where I can go on and on in as much detail as I want.
This is my blog, a place where I write whatever I want. A place where no one tells me “time’s up,” and shoos me out of the office.
If you didn’t want to read this, you wouldn’t have gotten this far down.
And now that you’ve gotten here, it’s my turn to say, “Time’s up.”
You can get out of this blog entry now, and walk through the door.
My door is never, never locked.
I want to buy food that I can carry home on the bus
Or on my back in a knapsack.