It's Beginning to Look A Lot Like Fun*Run Time

It's ALREADY that time of year again: The ADAPT Fun*Run for Disability Rights is April 22nd 2012. Maryland's fundraising goal is $8,000 this year. Yes, that's right, $8,000

Donate $1! Donate $10! Donate $100! Donate $1,000! JUST DONATE so we can FREE OUR PEOPLE! I thank you very much for your support!

Monday, January 23, 2012


Some editions of the Disability Blog Carnival have talked about intersections. The intersection between disability and feminism or religion for example. I've always had a hard time with these and usually skip those.

But today, today I learned something about the intersection of bipolar and CP that is invaluable to me. I shouldn't go to the gym when I'm manic. But of course I wasn't manic in the least this morning. I got home though and the first thought that came into my head was "I feel like death." Not anywhere near the way I felt like death here, but on that spectrum. I haven't slept in 2 days. And even before then I was sleeping enough but it wasn't quality sleep. I was tired but AWAKE! A feeling I HATE! And when I got home I was both more revved up and more worn out. OOPS...

I've realized that there's a delicate balance of energy expenditure when you have CP. Don't use enough and you won't get good quality sleep. You also won't produce enough serotonin. Your body wasn't meant to be sedentary. Use too much and you'll be nonfunctional. Yes this is true for any human being, but for us spazes the tipping point is more sensitive, the balance more precarious. Ok, not new news, but manic episodes can be like bowling balls, and I realized today that I should try very hard not to nudge the ball towards the pins. A spaz does not fall down gracefully, but rather with a thud :-D

My lack of sleep will gently nudge that ball. Each morning I wake up early pushes the ball closer and closer to the pins. So why tempt things? Why expend any more energy then I have to? As much as I need to go to the gym, my personal trainer appointment was probably a bad idea. As much as I need to keep moving (if I wasn't typing I'd be fidgeting), I need to try to keep still. I need to counterbalance the lack of sleep. Slow down the ball, not speed it up.


I had put in a call to my latest psychiatrist yesterday to discuss something different, but of course said, "I'm going away on Friday and I'm manic. what do I do?" instead.

"When did this start? I just saw you."

"Today," I simply answered. I wanted her to think I woke up this way, not that it started 3hrs before she called. I needed her take me seriously.

But she didn't take me seriously. Not enough time. "How do you know?"

How do I articulate it within a 7min phone call, most of which was spent telling her why she can't prescribe anything a psychiatrist would prescribe as the 1st line of defense. Tried them. Don't work. It's taken me well over an hour to write this post; to gather my thoughts.

All I could think of was "I feel like I was run over by a truck." I told her I didn't sleep for the past 2 days (me get up at 6:45? SCARY) and that I know I won't sleep tonight as I have too much energy. She wasn't any help to me because she doesn't understand the intersection of CP and bipolar. She doesn't understand the presentation of my atypical manic episodes and panic attacks. Heck I did say I was irritable for no reason the other day, didn't I? Although I really don't think this is what that stemmed from.

All I have to say to my shrink is "I feel like I was run over by a truck," and somehow she understands. She doesn't even have to say anything. Just a look. A look that says, Uh Huh. Add in 6:45am for good measure, and she'll say "you're probably right."

But my psychiatrist is the 4th psychiatrist who's told me that 6.5hrs of sleep sounded like enough sleep to her. She's the 4th psychiatrist to not understand that when I say that I need 9-10hrs of sleep I mean I need 9-10hrs of sleep a night. She's the 4th psychiatrist to apparently not have any training in chronic fatigue. Does she need to see me a mess to really understand?

I had 1 pdoc who still didn't understand. The pins were down, but the balls kept coming 1 after another without stopping. Couldn't get even 1 pin set up because they were coming so fast I had to keep my hand out of the way! Still she'd just throw up her hands, blame it on me. Blame me for trying to stop the balls using anything I could think up.

I'm trying to be proactive this time. Catch it before the 1st ball has started rolling. Right now it's just about to drop to the ground. Do something to stop it now! To put it back on the shelf, not down the lane.

So how do I know?

Well, I'm generally annoying when I'm manic, and after not being able to stop talking for the previous hour, and suddenly finding my mind racing about nothing in particular, no racing thoughts, just pent up mental energy, my brain screaming "DO SOMETHING!" I put the 2 together immediately and said to myself, OMG I'm manic! Make it stop now! Just those 2 things were enough, combined with the lack of sleep. Add in some long rambling emails within the last couple of days, and the length of this blog post (taken be about 2hrs to do) and you have the cherry on top!

Now is not a good time. Maybe later? After the 9 days straight where I have to be able to sit through meetings or airplane rides without constantly interrupting people, which I do all the time when I'm manic. OK? Can you do that for me brain? Pretty PLEEZZZE?

I Wish

Most of the time I like the fact that I'm crazy. I may quibble over the labels in my head -- am I really bipolar, or am I just depressed? Is my anxiety a seperate thing all together, or a package deal? -- but I generally like myself. Or at least I generally accept myself. That's not to say I don't set goals, don't want to be a better person, but I've always been at peace with my disabilities. Ask me as a kid if I could take a pill that'd cure my CP would I? And I don't think I've ever in my life said yes. I've been asked this question many times.

I've never said either out loud or in my head that I didn't want to have CP anymore. Maybe I wished I could do things like jump rope, but that's not the same thing. If someone told me I'd have to give up my disability to do it, I'm almost certain I would have said no. Correct me if I'm wrong, but I must have been 6 at the time. Somehow I've always known I'm a package deal.

What's this got to do with being crazy? Well sometimes I get so consumed by crazy, that I let out a sigh and/or an ARGH or a GAAAAHHHHH!!! in my head. Sometimes I say "Why do I have to be this crazy? I HATE BEING CRAZY!"

And then a half-second later I say "Don't say that! You don't hate being crazy!" Please tell me I'm not the only person that talks to herself in her head in the 3rd person...

What sparked this post was I was wondering to myself, why do I chastise myself? Who cares if I decide I hate being crazy? Why do I care? Because if I do truly hate being crazy, then I hate being me, and that's the worst thing to hate. I guess I somehow knew that when I was 6.

So then what do I hate? I hate being consumed by crazy. I hate when my crazy becomes overwhelming. I hate that my crazy holds me back from doing what I want to do, while at the same time I do realize the opportunities it's giving me.

I'm at odds as to whether this is ok. Whether hating these things is the same or different then hating the crazy in and of itself. They're not concrete things to hate like jump ropes. If it is the same thing as hating my crazy, then it's not ok. It's not ok to hate yourself. You're stuck with yourself 24/7.

Is it wrong that I wish my life wasn't so hard, so frustrating, because of my crazy? I don't know, but I do.

Thursday, January 19, 2012

I Love Using the Internet for Good

Right now, I'm irritable. I'm in one of those moods where it's everything and nothing. It's things I've complained about here before, and things I won't bother complaining about. I'm Just IRRITABLE! I'd blame it on the mood disorder, but you can't blame bipolar for everything. I think I'l have to blame "human being disorder."

Anyway, one of my new favorite things I discovered a few months ago is using the internet for peer support. And you're probably gonna say, "That's not new, such and such has had a website for 15 years!" But I argue there's a big difference in the value of support from people you actually know.

Where else is there to go for peer support in the wee hours of the night besides facebook? It's using the internet for good.

My November 10th status update from 1am when I couldn't sleep says "anxiety is worse then depression, but better then mania. Discuss." I'm glad I no longer remember what made me so anxious, but I tagged the first 10 people I could think of who identify as crazy and managed to start a meaningful discussion within 6mins.

Then there's my Oct 21st status from 12:17am "has a sudden fear of having a panic attack while I'm sleeping tonight. Not a completely irrational fear as I've had them before. Coping strategies anyone?" I didn't even think to tag people that time, and I still got a response in 2mins. About 25mins later, someone posted an idea I'd used successfully many, many times before, which has always worked. Don't know why I hadn't thought of it first, but I was able to sleep that night.

So I've decided to take this to my blog. What are some things you do when you're irritable that tend to help snap you out of it? Writing this is helping me!

and a very important PS -- I very rarely actually look at other people's FB pages as it fuels unwanted obsessive behaviors, but if you tag me in a status update in this genre, I'll be sure to add my 2 cents!

Saturday, January 14, 2012

6 Questions on Passion

I've wished in the last year that I'd taken some time to be reflective / introspective about my life and after spotting this meme on Jay's blog I decided to take the opportunity.

What puts a smile on your face?
Following what makes you truly happy is a wonderful way to figuring out what you were put on Earth for. Think about something that you do or that perhaps you used to do that brings you total happiness!

Furry creatures like dogs, cats and horses, NOT mice or squrils or things like that. 18 months ago I was visiting my brother all the way in California and one of his cats curled up on the right side pillow and another curled up behind my bent knees. I tend to toss back and forth and sleep diagional so it was hard to get a deep sleep while trying not to disturb them, but they put me completely at peace. It's also hard to be at a barn with all the dogs and ponies without being as mobile (and short) as I was when I was a tween. It's hard for me to bend over to pet dogs, and it bothers me that over the years I made a consious decision to make my balance worse. I've been longing to bury my head in my ponies neck, but I've been too afraid s/he'll move and I'll fall over. I wish I didn't always feel like I have to keep my distance these days.

What do you find easy?
What we find easy for us to do, will be related to what we are passionate about. It’s very hard to hate something that is very easy for us!

Information and referal. I always pay attention when people mention resources and love, love, LOVE when I can hook someone up with agencies/services that solve their problems and improve their lives.

What sparks your creativity?
Think about something in your life where you seem to always expand its horizon, always coming up with new, fun, and exciting ideas relating to that subject. Whatever makes you creative is something that you are passionate about.

I haven't been super creative in years, since the last time I had an extended hypomanic episode :( It's sad because creativity is one of the things I value the most.

What do you like to talk about?
Most of the time, we aren’t aware of this. A good way to figure this out properly, is to ask your friends. Ask them what they believe you like to talk about the most, what topic makes your eyes brighten up, and changes your entire behaviour.

I like to complain about the injustuces in my world. The lack of housing vouchers, people like nursing facility social workers who purposely hide community resources, lack of knoweldge of affordable health care, for example. When I'm at On Our Own I frequently talk about depression, whether it's the things I'm not doing like dishes, or the things I am doing, like horseback riding and personal trainer appointments, or the rush I get from activism.

What makes you unafraid of failure?
When you do what you are passionate about, you have total confidence in your abilities. This makes you not worry about failing, because in your mind, how can you fail when you do what you love?

I'm always affraid of failing because I've failed so much in my life that I mostly expect to fail. Sometimes though I purposely go into something with very low expectations, like bowling, or horseback riding. I can't fail when I have realistic expectations.

What would you regret not having tried?
If you were at the end of your life, what would you regret not having pursued? What would you have liked to do, that you didn’t get a chance to?

I deeply regret not going back to school and not having been able to finish my degree when I was so close to being done. I wish I wasn't taking an extended break.

Wednesday, January 4, 2012

Communication, or, How People See You

So yesterday I attempted to discuss my communication difficulties with my shrink, however I did a crappy job of conveying what it was I wanted help trying to improve, because I have communication difficulties.

So then today I went to OOO, and I was like, well ok, I have to come up with something to talk about, so i might as well ask people how to rephrase what it was I had been trying to say. Except I'm afraid I didn't make much sense as I was kind of tongue tied and tripping over my words.
The thing I'm worst at ... well the thing I'm 2nd worst at, besides cleaning, is communication.
After which 2 people, one who has known me maybe 3 months give or take, the other though has known me about 2.5 years, both told me how great they thought I was at communicating. Well ooook.... my entire family will strongly disagree with you, but ooook...

Sometimes I wonder what people use as the basis for impressions, because I just don't get where this one came from!

Tuesday, January 3, 2012

Happy New Year!

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