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

Gentle Pastimes

So many days are a struggle, I decided I needed an easy, gentle hobby to keep things light. So, I'm writing a book called, "Dogs I've Made: Seriously Silly Poems by Rodney Robbins." Here is one that's a bit more mysterious than silly, but I thought you might like it. See if you can tell me what this poem is about.

Charcoal

(c) 2010 by Rodney Robbins

Like a soft black wind with tender paws
Or a charging creature of the night with teeth
He bounds and slashes
Fear The Great Hunter

Or a charging creature of the night with teeth
Yet, sometimes he sleeps
Fear The Great Hunter
Gentle his touch and tender his caress

Yet, sometimes he sleeps
Till he wakes, groggy, lost in a world of giants
Gentle his touch and tender his caress
He only drinks running water

Till he wakes, groggy, lost in a world of giants
The Great Hunter is under attack
He only drinks running water
The enemy charges, too many, flee!

The Great Hunter is under attack
Defenseless, he shows his belly
The enemy charges, too many, flee!
Suck them in and rip them to shreds

Defenseless, he shows his belly
We live for combat
Suck them in and rip them to shreds
A job well done

We live for combat
The sun shines bright in the window
A job well done
Sleep now, little one, sleep in the sun

This form of poetry is called a pantoum. The rhythm is like gentle waves on the beach. I like them. Do you think you know what this poem is about? Use the "Comment" link below or write to Rodney Robbins here.

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.

How Elephants Cheer Up

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

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.

The Joy of Rain

I went home for lunch today. Bright. Hot. Big puffy clouds. Nice motorcycle riding weather. On the way back to work, I noticed the clear blue sky in front of me, and the giant, dark clouds behind me. Sure enough, it started raining. Big drops that hit me with a cold splat! So, do I stop before I get too wet? Do I keep going and hope I can outrun the giant rain drops? I saw an empty carport by a fire station, swung in, pulled on my rain pants, hopped back on the bike and, wouldn't you know? The rain stopped! Sometimes that's all it takes to make me laugh.

To Enjoy Life More--Take the Easy Road

Some of you may know that I just finished writing a new musical romp called "Big Feet, Big Love." I've been having a bit of trouble promoting the music because my hands freeze up so quickly. So, rather than give up, I pulled out my old Yamaha keyboard. It's part electric piano, part chord organ. By pushing a few buttons, I can play chords, rhythm, bass and drums--basically a full accompaniment for my songs. It only takes two fingers! Unbelievable. Let me practice a bit more, then I'll post a song, but the sound is pretty good and playing music is a joy again.

To read more about the play, visit my other blog at MyNewPlay.com.

Are You Getting Enough Rest and Recreation?

"Guard your sleep," said the archangel, "when you sleep, you become invisible to the demon kind, and they will pass you by."

After a recent head-on car crash (not my fault), I know how important sleep is. Because of the accident, my nights are restless. I'm cold. I'm hot. My foot hurts (probably pulled a tendon). So do my hips, neck and back. When I wake up, I'm almost more tired than when I went to bed. This is no way to get by in the world!

I've been taking my pain meds at night, adjusting the air conditioning, trying to keep to a schedule and it all helps, but it is hard.

The other end of the stick is to get enough recreation: have some fun, stay active. Making yourself tired can help improve sleep quality, but it also helps the overall quality of life. So, I enjoyed a baseball game and fireworks with my family on Independence Day. I used my cane and went shopping and out to dinner. I do what I can to keep romance alive even when I'm not as healthy as I'd like to be. It's worth it.

As long as we live with chronic illness, accidents and old age, we'll always have a good reason to suffer. The trick is to enjoy life anyway.

Where is the Beauty in Your Life?

Beauty. Joy. Happiness. Sometimes it can be difficult to find those things when we don't feel well. At the same time, the beauty of the sky is always there above us. Sometimes it is clear and blue. Other times the sky is full of huge, dramatic thunderheads. Joy isn't always with us, but it is often around us. Even when we don't feel joy, we can often see others enjoying their lives. Children playing. Lovers walking hand in hand. A crowd cheering at a baseball game. When you live with chronic illness, not every day is a happy day. But we all have happy memories, at least a few. Everyone can make happy plans, even when they are mostly just day dreams. A good meal, a fun story, a punchy joke or a funny cartoon can be enough to make us happy.

No one owns the sunset. No one feels joyful and happy all the time. But beauty, joy and happiness don't have to be ours for us to enjoy them. Try this experiment, watch the people around you, and when you see someone else smiling, see if you don't smile too, at least a little. It's called sympathetic joy and it is one of the true keys to happiness.

Travel with Chronic Illness

Just because you have a chronic illness doesn't mean you don't love to travel and enjoy life. Here are some travel resources that can help you get back in the saddle. No, I haven't tested them all personally yet, but I'd like to!

Basic Travel Sites

Trip Advisor and Fromer are good leisure travel sites as are the classics Orbitz and Hotels.com.

Diabetes Travelers

The folks at Worry Free Travel say they can handle a wide range of diabetic needs. Diabetic Traveler has a wide range of links to other travel information, hints and tips. ADA has a nice article on traveling with diabetes here.

Wheelchair Travel

Accessible Journeys has information on group tours, individual travel, cruises, properties, airfare and more. Access-Able Travel Source is for "mature travelers with special needs." They have information on destinations, travel professionals and stories of real world travelers and what they have faces--bad and good. You will also find great information at Disabled Travelers, including: agents, operators and adventures.

Gluten Free Travel

The big dog in this area is certainly Bob and Ruth's Gluten-free Dining and Travel Club. They have getaways, workshops and special trips for newbies who are just learning about eating gluten free. Celiac Travel has restaurant cards, travel stories, news and tips, but I didn't see any way to book a tour. Of course, the same gluten free tips that work in your local restaurant work in any restaurant where you can make yourself understood.

Searching for Travel Opportunities with Your Chronic Illness

To find information on traveling with your medical condition, go to Google and type [+"name of your condition" +travel or +tours or +trips]. The brackets are shown to represent the search box. Your whole search string might look like this [+"kidney dialysis" +trips] or [+migraine +travel], or maybe [+wheelchair +tour  +Ireland]. Heres what I found with the last search: Ireland Escorted has one-on-one tours where you set the itinerary and travel with your chair in a large comfortable van.

 

Conclusion

Just because your life isn't perfect, doesn't mean you can't have a wonderful time! Click the links. Learn more. Go explore. Report back here with your experiences.

The Joy of Giving, When You Have Nothing to Give

Award winning song writer Billy Edd Wheeler wrote a tune called “Desert Pete” back in 1963. In the song, old Desert Pete leaves a note by a water pump along with a jar of water to “prime the pump.” My Grammy Robbins had a hand-cranked water pump like that in her kitchen, and if there was no water left it the pipe, you had better hope someone left a pail of water on the sink to prime the pump. Otherwise, it was a nightmare to get the water flowing again. Maybe you feel too drained to consider finding so much as a drop of joy in “giving back to the community.” If you wish you could help other people, but don't have the energy because of your chronic illness, you might want to partner up with an organization that can prime the pump for you.

If you volunteer through the local chapter of the Muscular Dystrophy Association for instance, or at your monthly Celiac Disease or Migraine support group, or through a nearby church, charity or hospice, they will do most of the grunt work for you. They already have systems in place to recruit and train volunteers. They probably already work with people who have special needs. They understand that you might have good days and bad days. They already work with busy professionals who can only volunteer for a few hours a week, or donate just a few hours for the occasional special event. The chances are good that if you talk to your pastor, support group leader or community based volunteer coordinator, they will be able to match your abilities to a needy group in your area.

Even when you can't travel, you can still help via telephone or over the internet. People are usually scared when they are newly diagnosed with a chronic illness. A telephone conversation, internet chat or exchange of e-mails with you might be like a miracle to them. Giving back is a wonderful way to find lasting joy, and it may be easier than you think.