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

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Say Merry Christmas the Easy Way

It's Christmas Eve, and you have been too sick and tired to send out your holiday greeting cards. Don't despair. you can still send them via e-mail or as a mass text message. I just got a Christmassy text from an acquaintance and it was very nice. So, open up your e-mail or pull out your cell phone and make life easier!

Oh, and my very best wishes to you and yours for a wonderful Christmas, a fantastic Yule and an amazing New Year.

Rodney Robbins

Fitness For (Almost) Everyone

I used to read stories to a charming old lady in a nursing home. Her joints were so confined by arthritis that she used a wheelchair whenever she wasn't in bed. What kind of "fitness" routine could she possibly do? Strangely enough, she could have used the same one I use: "Flex, Circle and Twist." I developed this routine years ago to keep my muscles from stiffening up during long spells of weakness or near paralysis. Here is my "Flex, Circle and Twist" range of motion routine works.

Stand (or sit) and work your way up your body flexing, circling and twisting every joint you have.

• Flex your toes.
• Flex, twist (just barely) and circle your ankles.
• Flex and twist your knees (lower leg).
• Flex, circle and twist your hips joints (upper leg, one leg at a time), and so on right up to the neck and even the jaw bone.

I can stand (most days), so no worries for me doing this little routine, but how does a crippled old lady in a wheelchair do it? She would simply flex her toes as much as she can comfortably flex them. She can circle her ankles as far as they will circle without pain. I know she could only move her lower legs (from the knee joints) about 6" but for HER, that was HER full range of motion. 

This routine has kept my muscles fairly limber for about 10 years now. Sure, my muscles stiffen up during an attack or if I sleep on them wrong, over use them on the weekend, or stop doing the exercise but, I've never developed shin splits from it, never pulled a muscle, never injured my knee and never had a heart attack. With a little guidance from a trainer or physical therapist, these exercises can even be used with people who have very little independent movement.

So, if you wonder where to get started with a gentle Gentle GENTLE exercise program, try my "Flex, Circle and Twist" range of motion routine.

Acceptance and Illness

It is hard to accept change. Hard to accept weakness, or defectiveness. It's hard to be told no. It's very hard to be body slammed, kicked in the head, have your legs broken then be strapped down to your bed when the universe says, "Hell, no!" (Yeah, yeah, that's not literally what happens to us, but it's awfully close to the truth of a migraine or a paralysis attack, at least for me.) It is those times when we have to at least TRY to let go of the things we can't control.

Two things really help me at times like that. One is a line from the play, "Couple of White Chicks Sitting Around Talking." The line is something like, "Maybe all we have to do in this world is breath." The other thing is the idea of trying to be my own best friend. I ask myself, "What would my best friend want for me right now?" The answer is usually, "He'd want you to stop beating yourself up and get some rest!" That's usually a very good idea.

What do you do during those dark times? Use the "Comment" link below to share your secret.

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.