Tuesday, March 8, 2011

Questions for my fans

Well, it looks like I need a new name for my blog.  Granted, I still have dysautonomia (pots), but my primary illness is mitochondrial disease.  Here I was being so clever with my blog name.  I even came up with it all by myself! Aren't you so proud of me?  Yeah, I know, it's the little things I get excited about.  So, anyway, I need a new name.  What do you think?  I can't think of anything clever.  And I'm just not into boring names.  I need something different.

I have started taking rest periods everyday.  Dr. Shoffner stated that I should  take 4-5, 30 minute rest periods daily.  You're probably thinking, "why do you need rest periods if you are in bed or on the couch all day everyday".  Well, 95% of the energy we need comes from our mitochondria.  That includes our cognitive activities as well.  So, all this time I thought I was resting and conserving energy, I really wasn't.  Even when I'm "resting" in bed and on the couch I am always reading, playing computer games (damn addictive Farmville), watching TV, or a combination of all three.  So I am slowly working into actually resting 4 to 5 times a day.  For my rest period, I go into my bedroom, close the blinds, turn off the light, lay down in bed, and listen to relaxing music on my ipod.  The music I have been listening to is relaxing nature sounds and music.  A few years ago my aunt gave me a couple of cds by Dean Evenson.  I put them on my ipod for my rest periods and I thoroughly enjoy it.  It really helps me relax.  It reminds me of getting a massage. Oh, how I would love a massage right now.

The cds I have on my ipod are...
Dean Evenson - Healing Waters
Dean Evenson - Tao of Healing
Dan Gibson - Harmony

Now the other thing I need your help with.  Does anyone have any recommendations for more relaxing music?  I don't want singing.  I love nature sounds, by themselves or with music.  I do like what I have but I have a feeling that I will get sick of listening to the same thing 3-5 times a day quite quickly.

This is the kind of yoga I DON'T want to do.
I am going to try to start stretching daily.  When I was exercising on an almost daily basis, I would do yoga once a week.  I thought that might be an option for me to help with relaxation, stretching, and light exercise (stretching is exercise for me now).  But I remember the yoga I used to do was not that easy.  I would break out into a sweat and I was in awesome shape at the time.  Anyone know of a yoga program (DVD) that is not at all strenuous that would help me with stretching on a daily basis?  Sometimes it's easier for me to stick to something if I have a program to stick to, not just my basic stretches.

If you have mito, how did you find a doctor in your area that specializes in mito?

Okay, that's the last question.  Please comment if you have any recommendations or advice regarding the above topics.

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Bibliotekaren said...

Robin, I've pondered the blog title question a bit. But alas nothing creative sparked -- mito pots head?

I get what Dr. Schoffner is saying on the cognitive breaks. I notice a big difference between laying down resting on the bed with no stimulation (book, computer, tv) vs laying on the couch and engaging in processing information through some medium -- still working the brain which needs a lot of energy like you pointed out.

I don't have a gentle yoga CD to suggest, although there are probably plenty out there. Although I've done yoga for almost 20 years, I just do a few sitting stretches for legs and pelvis now with occasional shoulder stuff. For me, I've had to let go of my all or none thinking.

Those of us with severe exertional intolerance for whatever reason (mito, pots, dysautonomia, neurological impairments, etc.) really have a challenge to balance two competing and complementary goals: (1) doing less and pacing activities to conserve energy and and (2) minimizing deconditioning. I remember pondering the conflict when studying about this in OT school years ago. Now it feels like there's a tiny little sliver of overlap that I'm always shooting for. I applaud you for your efforts to work these two out.

Take care,

Anonymous said...

itunes has some free yoga podcasts that you can subscribe to. You can get daily poses and do that at your own pace.

Anonymous said...

FYI, Misti has a friend that has had mito for 10+ years. . . she lives here in KC. Misti said to give her a call and she will get her number for you if you want to talk to her!


erinj0 said...

I love reading peoples experiences and stories, while living with POTS. It's nice to relate to : ) So I am definitely a new follower!

Take care,
♥ Erin

Robin said...

Donna - I have a feeling that balancing those two competing goals will be an ongoing struggle. I have yet to learn what that little sliver of overlap is for me. Each day I either do too much, or probably too little. It may be awhile before I learn how to deal with that conflict (one of many) within me.

Anon - Thanks for the recommendation. I will definitely look into that.

Jenn - Why are you not a follower yet???

Erin - Thanks for joining the party! I am with you there. It is so helpful to hear other people's experiences with POTS and/or chronic illness.