Living with Chronic Illness, Muscular Dystrophy, Periodic Paralysis, Celiac Disease, Migraine, Heart Disease, Diabetes

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How Elephants Cheer Up

There must be good in the world when an elephant can jump on a trampoline.

Moving Slow and Watching it All Go!

I'm sorry it's been so long since I last posted. I've been alternating between Periodic Paralysis attacks and really long and nasty migraines that don't seem to every really go away. Ugh! Just had one minor attack of weakness today so that's doing better. I hope you are doing well. 

The family and I went to see the disaster movie "2012." It was a hoot. Sometimes it's fun to see everything blown up. It feels good, especially when you feel bad. I'm sitting there in the dark watching LA slide into the ocean and I'm thinking, "Traffic problems? Not anymore!" Mad at some doctor from the North East. Well, he's dead now! Tired of hearing about global warming? Not an issue when whole continents are sliding around and being washed clean by 1,500 foot tidal waves.

I know it's not nice, but I just thought it was great. What a blast! Highly recommended. Especially if you don't feel well.

What Do We Find in the Sadness?

Maybe sadness is our gate to understanding.

Maybe sadness teaches us a lesson--to trust, to endure, to reach out, to be in the moment, even in the saddest moments.

Maybe it's better if we don't run from the sadness.

Maybe it's better if we sit together with the sadness and comfort it, and let it comfort us.

Maybe the point of sadness is to pass through the sadness and come out the other side and say, "Ah, here is the world again!"

We know sadness is a real thing, a natural thing, an unpleasant thing.

Maybe, just maybe, it' s almost a good thing.

Dark Thinking and Chronic Illness

Dark thinking. We've all had it. You almost can't help it when you live with chronic pain, a constantly sick stomach or fluctuating energy levels that go from the toilet to the tarmac. It's easy to just get mad and puke all over yourself, go along and agree with yourself that life sucks and then you die (after all, it's partly true). But there are two things you need to know.

One, your dark thinking may be trying to tell you something. You're not sleeping well. You did too much yesterday. You are not awake yet. You are hungry. You forgot your meds. So, listen to your dark thoughts, and see if they are saying anything important. Listen then admit to yourself, "I need more sleep. I'm going to take care of myself and go back to bed," or "I guess square dancing for two hours was a bit much. Next time I'll take better care of myself and dance an hour then watch an hour."

Two, your dark thinking may be full of crap. If you listen and all you here is "blah, blah, blah, you suck!" Talk back to those dark thoughts. Say, "I have no good reason to feel worse today than yesterday. The sun is shining. I'm not in a lot of pain, so shut up!" or maybe, "Yeah, it's one of those gloomy days, but I'm not going to listen to you moan and kvetch all frackin' day. Here's a pain killer now, Keep Quite or I'll take you out and whip you!"

The next time you notice dark thinking, try both of these approaches. One of them will usually work.

Rodney's Cosmetic Surgery

"I was going to have cosmetic surgery, until I noticed that the doctor's office was full of portraits by Picasso." Rita Rudner.

For more on Rite Rudner, click here.

For more on Rodney Robbins, click here.

Start with Generosity

Generosity isn't easy when you feel horrible. On the other hand, when you feel horrible, what else do you have to offer? As much as I whine and complain, one of the few things that has consistently helped me feel better, even when I'm at my worst, is to get outside my own little tornado, think about someone else, and do a little something for them. It's not always easy. Sometimes it hurts (not because being generous hurts, but because doing anything hurts), but afterward, I hurt a little less, and my spirit feels a little stronger.

Generous Questions

• Who still needs help, even when you feel bad?
• What could you offer to do, even on a bad day?
• Who feels worse than you do?
• How could you give something?
• What do you have to offer?
• What are the smallest things that people value, that you could accomplish?

When I was at my worst (unable to work, even taking the census), I used to get so angry because I couldn't hold a job. Of course, I was doing SOME-thing all day, so why couldn't someone find value in something I was able to do? I finally had to accept that what I could offer was subtle: a kind word, a loving gesture, a little help with dishes, a smile to a stranger, sharing the remote control, a telephone call. We don't get paid for this stuff, but this type of generosity enriches our lives. Try it. Try just a little bit of it. See if it works for you.

PS

Want to know more about Rodney Robbins? Click this link.

Periodic Paralysis is Too Hard to Juggle

Since I got out of prison (or what some other people call "high school"), I did okay academically. I graduated near the top of my class from two colleges, and most people who meet me would think I'm smart enough to come in out of the rain. Still, there has got to be more to life than trying to figure out how to live with Periodic Paralysis, Migraine headaches and Celiac Disease. It can't all be about trying Trying TRYING to be smarter than these darned demons that follow me around. 

Periodic Paralysis Is Too Much

Heck, on a good day, I can barely keep up with the complex interaction of triggers and symptoms and weather and food and activity and sleep. Then, when I'm getting a migraine, getting over a migraine, going into a paralysis attack or coming out of an attack of weakness, or when I've accidentally poisoned myself with some hidden gluten, my brain turns to jello. During those spells, I can't remember so much as where I parked my motorcycle. Trying to keep everything else straight while walking and balancing sun glasses on my nose is out of the question.

Moving Beyond Periodic Paralysis and Trying too Hard

Maybe simple human kindness, all by itself, is enough. Maybe you can't ask anything more from me on a bad day. Heck, maybe simple human kindness is all I need to remember on a Good day. Maybe joy is enough, or ease. Maybe looking for ease, the easy way, the healthy way, the way that is good long term, the easy feeling that says, "Well, that's enough of that," or "That looks easy," is enough. 

I don't have the solution yet. But I do know that trying to hold everything in my head all at once doesn't work very well. Periodic Paralysis is just to hard to juggle.

Rodney Robbins Doesn't Think Straight

Thinking errors. While they can lead you into trouble, they are also classic symptoms of depression, low blood sugar, hormone problems and fatigue. We feel bad, our brains try to create a rational explanation, and we end up with delusional thinking that makes a bad situation even worse.

Rodney Robbins Thinking Errors

My two most common thinking errors are called Filtering and Discounting the Positive. Dr. David Burns explains these errors very well in his classic book, "Feeling Good: The New Mood Therapy."

Filtering means combing through your experiences and focusing exclusively on the BAD things that happen to you. When my potassium drops, sometimes I'll dig up bad things I did waaaay back in middle school. My mind replays these events and tells me, "See? You suck! You've always sucked? What a frackin' jerk you are!" Is it rational to worry about events from 20 years ago? Things that were not nice to do but that were typical of lots of nasty little middle schoolers? My rational mind says no, but when I already feel bad, my depressed mind says, yes.

I'm also prone to Discounting the Positive. In the real world, I may have had two weeks of productive work, but when I have two "nearly worthless" days of weakness, suddenly all those good times don't matter any more. My mind says, "Yeah right. Two weeks of being barely normal. Oooo, that's impressive!" In those 2 days, I may have actually done a fair amount of work (in between resting and resting some more), but suddenly that doesn't count. Neither do the weeks of productive time. Is that rational? No. Does it feel rational when it's happening? Yes. 

Fight Back Against Thinking Errors

The first step is to notice the fatigue, illness, flatness or depression. Then be aware that thinking errors are lurking near by. When you notice them, test them against reality. Talk back to them. Make those thoughts earn their keep. Ask yourself if you might really just need a bit of patience, a few extra hours of sleep or a good meal. Consider you may have missed a dose or your medication, or that you need a bit extra today. Don't roll over and let these errors steam roll your life. Fight back!

Got a story about talking back to your thinking errors? Use the "Comments" link below and tell us about it.

Are Disfunctional Family Roles Hurting Your Health?

Feeling stuck, trapped or backed into a corner by life's unreasonable demands? Maybe it's not all about your illness. Maybe you are just trapped by the role you assumed automatically in your (typically) dysfunctional family. Below are the common roles as outlined by Sharon Wegscheider-Cruse of the National Association of Children of Alcoholics. Of course, you don't need a drunken parent to have a tough childhood. There are all kinds of destructive family situation. We survive them, but sometimes the scars still show.

• Little Caretaker--takes care of everyone when the parents can't
• Family Hero--makes everyone proud (at any cost)
• Scapegoat--takes the blame for the parents mistakes
• Lost Child--hides as best he or she can from the whole situation
• Clown--keeps family issues and arguments from getting too deep/angry/hard

If you had a tough childhood and lived with alcohol parents or faced down other types of abuse and live with a chronic illness, your pain may be pain of the soul as well as the body. Learn to embrace yourself, even when you feel defective, damaged, rejected and lost. Read more about these family roles at RecoverIsSexy.com.

What Does This Mean to You?

"God made the world out of nothing, but sometimes the nothingness shows through."Paul Valery, French poet.

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