Exercise, Pacing yourself, and Richard Simmons

I committed myself last summer to getting serious about regular exercise, and getting stronger. I had to be patient with myself, and let myself take breaks, work incrementally, and listen to my body. And I love how I feel after a great workout.

Unfortunately, when I've been in the middle of a lupus flare, fast-paced, sweaty aerobic workouts were not an option. I missed them a lot. They were a great stress reliever, fun, and of course good for me.

Pushing too hard too fast can lead to worse than sore muscles or injury; it could set off a lupus flare for me, or leave me in fibromyalgia pain for several days.

One other consideration: I also had to pick a workout I like.
I love music. I love to dance.  So one of my "when I'm better" fantasies was to be able to again do the aerobics record (yes, record! an LP!) that I used to do when I was 15. I loved that record. I forget the title of it, but it was Joanie Greggains and it had all kind of great music on it: Hall and Oates, BeeGees, Village People. Not on my top 10 favorite albums of all time, but great music for working out. And way better than that boring drum-synthesizer non-music track on most music videos these days.

Of course, after I had a stroke in 2002, I couldn't even get up and down one stair, never mind do aerobics. So back then I started really small. I got in the pool and kicked around. Then when I could get up and down the one stair to the outdoors by myself, I went for short walks. To the stop sign and back. A few yards further each day, with my cane, never far from the house, just in case I fell. I worked on it a little every day. Eventually I could climb stairs and get around normally, without a cane.

Fast forward about 2 years. I found a copy of that Joanie record on ebay and Joe transferred it to CD for me. But there was no way I could do the workout. I mean I was literally crawling up the stairs on all fours at that time. How was I ever going to be doing jumping jacks, leg lifts, and running in place? I tried it anyway, in a moment of pure wishful thinking/ delusion, but I just could not get through it and I ended up with a big migraine.

So I started out just walking. Brisk a walk as I could do, which for me was one 20 minute mile. I know that's not fast, but that's what I could do. Me and my ipod, with David Lee Roth singing "Just a Gigolo," looping around the neighborhood. After I eliminated dairy from my diet, I had more energy and I threw in short little passages of jogging. Bolstered by my newfound energy, I decided to try the Denise Austin "Fat Burning Blast" 25-minute workout that I used to do (on VHS). Aimed too high again. Needed percocet that night. Back to the walk/ jogs.

Then I remembered Richard Simmons. His videos don't have a lot of jumping around, and that jumping was what always aggravates my system. So I got his Disco video (great tunes!). And at first, I just did one song. Because it takes me time to learn all the moves, and I had no stamina. Then two songs. And after a couple months I could get through the entire workout.

After sweating with Richard all summer, I went back and did the Denise Austin video and now I could handle it just fine! So, I added in a Dancing with the Stars video to the mix. Wow, that was hard. I had to stop the video and catch my breath a few times. But no pain. It took a while, but now I can get through the first 2 dances (that's 30 minutes of swing and jive) without much trouble. So... it was time for the ultimate test: Joanie Greggains! I put on the CD, and Yes! I did it! And I felt fine. It was challenging, but I did not need percocet or any other remedy afterwards.

People whose lupus is not under control have to be even more gentle and more careful. It's important to move. It's important to be wise. It's also important to hope and to try.

And it was patience, persistence, listening to my body, and Richard Simmons and his totally doable workouts with fun songs that made it doable for me. Dare to dream big, but start small and check in with yourself.

Yours in health-
Carla

Carla Ulbrich

The Singing Patient: Author, Humorous Songwriter and Entertainer
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www.thesingingpatient.com- performance  info and dates
www.youtube.com/user/carlaulbrich - funny songs
www.twitter.com/singingpatient
www.linkedin.com/in/carlaulbrich

"I am reading Carla's book How Can You NOT Laugh at a Time Like This? and loving it. I LOVE Carla's songwriting, so I'm not surprised that her prose writing is as smart, funny, and insightful as her music." - Christine Lavin

http://tinyurl.com/348hroc- Carla's book

Being normal is overrated- or is it?

"I just want to be normal."
There are a few times in life that make us say that
1) being in Junior high school
2) lying around in pain after being diagnosed with something chronic and incurable

Junior high school aside, I never wanted to be normal. Exceptional, yes. Strange and wacky, definitely. Outstanding, indeed. Memorable, talented, funny, smart, anything but normal. Up until I got sick. Then, suddenly, "normal" started looking pretty good.

I recently went through 6 months' worth of PT for tendinitis, and I'm much stronger in my back and arms now. I also did some sessions for my back,  because for years I've been crawling up the stairs, as my legs would not support me. Now I am in the kind of shape that most normal people are in when they show up to start a fitness regimen. I've graduated from "remedial" to "normal."

But naturally, once I got back from being "sickly and weak" to "normal," my desire to be exceptional resurfaced, and I am again dissatisfied with being simply "normal."

First I want to tell my friends with chronic illnesses that it is possible to get back to feeling "normal." And if that is your goal, 1) it's attainable and 2) it is a worthy goal, and if you stop at that, I got no problem with it.

Sometimes, you're falling apart so fast you're just trying to not die.
Like, the three times I've gone into kidney failure- my muscles started wasting away, I got so weak I couldn't get up and down the one stair to the outside of the house.
And I gotta say, the hospital is certainly no place to get in any better shape.
How can you regain your strength when they don't want you to leave your bed?
Prisoners have a better shot at getting healthy than hospital patients.
I hobbled into an emergency room once with chronic pain (and kidney failure) and after a week in a hospital bed, I couldn't even stand up without a cane and -no lie- a giant leash around my waist.

Add to that the fact that stress can trigger any illness, and you do have this worry in the back of your mind that if you work out too hard, you're going to end up sick all over again.

Add to that the pain factor (who wants to exert themselves when it hurts enough just sitting around?), and you've got a mess of challenges to overcome.

I have gone from very sick and weak to "normal" 3 times now, and this 3rd time was with the aid of Physical Therapy, but the other 2 times I did it on my own. The first time, I started with walking. I'd set a goal to go just a little further every day, starting with just going to the stop sign and back. When I got up to about 2 miles, I joined a gym, where I used a stationary bicycle (I rode so slowly that it cut off because I guess it thought no one was riding it, but you gotta start somewhere!). Then I joined a bicycle club (I was the slowest one in the club, and was usually riding way behind everyone else- but the key was to measure my progress against what I could do the week or month before, not against what others were doing). As long as I saw progress, I was happy with myself.

The second time I got sick and got better, I was too weak to walk. My legs were blown up with water retention from the congestive heart failure, so instead I got in the pool and held onto the side and kicked. Then I swam. Then I walked.

The third time, I was really weak but I had good insurance and access, so I got a prescription for PT, and I went to a sports medicine place for 6 months. When I "graduated" I got a regimen of exercises to do on my own to stay in shape.

With or without a PT, the idea was the same each time: start really small, deal with the pain issue (heat, ice, massage, whatever works), do exercise that doesn't aggravate the pain (swim, walk, cycle), set *gradually* larger goals, and watch inspiring movies and read inspiring books to keep yourself going. Maybe join a club of some sort for the social aspect, if you can find one where you won't feel left behind by the more fit people. And if you have setbacks, back up a bit and start over. Because in the words of Rocky Balboa, "It's not how many times you fall down, it's how many times you get back up."

And now that I am "normal," I've set my sites higher, and am looking into what I can do next, because I want to have *fun* living inside a body- wouldn't it be great to celebrate living in a body, not just try to tune it out all the time?  It's certainly what I did before the illness struck. So what's next? Tap dance lessons? Aerobic dance? Soccer club? My plan this year is to explore some of these until I find something fun. I think that is what a lot of normal people do.