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Daily Journal with Mitochondrial Myopathy

Day by Day with a Movement Disorder

My Journey with a Mitochondrial Disease - "But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint." Isaiah 40:31 KJV

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Diagnosis in 2006 - Parkinson's Disease and Peripheral Neuropathy, then in 2007 - Essential Myoclonus. Finally in 2011, after a muscle biopsy, I was diagnosed with Mitochondrial Myopathy as well as Peripheral Neuropathy.

Share my journey - coping with the testing, the medicines, nutrition, digestion problems, exercise, the emotions, uncertain diagnoses and no telling what else!

Tag Archives: sunbathing

God’s Healing Sunlight

Day by Day with a Movement Disorder Posted on March 31, 2018 by DBMarch 31, 2018  

Healing Sunlight

When I left off in my last post, I had just been diagnosed with my second MRSA infection. And that was right after getting over a Strep infection. So I had a very sick winter. Thank goodness we’ve had some early Spring days, and I’ve been able to get out and sunbathe several times already. God’s healing sunlight has helped tremendously in making me feel better and stronger. Even on cloudy days when I can’t sunbathe, I’m back to walking around the house several times a day. I can feel the strength slowly come back. And I truly believe the sunlight has a lot to do with it.

I have continued to use my RubyLux sunlamp arrangement I’ve set up in the small bathroom, along with the SAD light and the 860mm infra-red light. They got me through the winter, and I can tell they help. But good ole SUN just makes a huge difference for me.

I had routine blood work done recently, and my vitamin D level is very good. I went back on a supplement in the fall. Hopefully I can stop taking it once we get lots of pretty days, and I’m able to sunbathe almost every day.

Sleep Still an Issue

I started having trouble staying asleep somewhere back this winter while I was sick, and I haven’t found a way to solve it yet. I would fall asleep quite easily, but then I would wake up to go to the bathroom and it took hours to get back to sleep. Eventually I just waited for a while and then got up and worked on the computer until time to get up. I’m now making myself stay still and just lie there until I finally do go back to sleep. But my actual number of hours sleeping are too interrupted to be very restful.

Circadian Rhythm Strategies

I’ve worked really hard to use as many of The Energy Blueprint* strategies as I can to improve my Circadian Rhythm. I wake up to the birds singing outside every morning, and I get bright sunshine in my early morning walk. When it’s cloudy, I use the SAD light in my bathroom sauna setup. I usually walk around the house several times a day, too, so I’m getting plenty of sunlight and fresh air, and as much exercise as I can tolerate.

I use blue blocker glasses and a blue light app on my computer and Kindle at night. We use room darkening curtains and red light flashlights if we get up in the night. And I don’t have anything to eat for about five hours before bed. We cool the house down after 8PM all year round. We have a bedtime routine and a regular bed and wake up time. I turn off the WiFi at bedtime, too, and we don’t have any electronics on during sleep.  I’d hate to think how little sleep I’d be getting if I weren’t doing all that.

Constant Headache

Somewhere along the way, a couple of months or so ago now, I started having a headache every day. Sometimes I wake up with it, but it usually starts between about 10AM and noon. Then it goes on until I fall asleep at night. I can ease it some with a hot pad on my neck, and I can distract myself from it while I’m busy during the day. But it’s still there, getting worse as the day goes on.

So I finally gave in and started taking Goody Powders, even though I know I shouldn’t. After using them several weeks, I stopped the Goody Powders. I figured it had probably turned into a rebound headache by then. I toughed out two weeks, but the headache never stopped. So I’ve gone back to one Goody Powder before lunch for now. And yes, I know that is toxic to my body and doesn’t help with sleep issues. But nothing I have tried in the way of stress relief or sleep strategies has stopped the headaches so far.

Doctors

I’ve made an appointment with my Neurologist. I’m hoping to get a referral to a Sleep Specialist doctor I saw years ago when they thought I had Parkinson’s. I weighed 50+ pounds more back then, and I was diagnosed as having Sleep Apnea at that time. I have dealt with urinary incontinence for quite a few years now, and that might be the problem. The brain is supposed to tell the kidneys to stop making so much urine during sleep. It sure doesn’t seem like THAT is working properly! I don’t know what’s causing all these sleep issues, but I do know I need help fixing them.

Posted in Quality of Life | Tagged Circadian Rhyrhm, headache, Quality of Life, sleep, Sleep Apnea, sunbathing, sunlight, sunshine, The Energy Blueprint | Leave a reply

Cold Intolerance

Day by Day with a Movement Disorder Posted on November 18, 2017 by DBOctober 10, 2019  

I have had a problem with extreme cold intolerance for years. We bought The Energy Blueprint* program to learn strategies to increase my mitochondrial energy. The doctors told me in 2011, when I was diagnosed with Mitochondrial Myopathy, that there was no treatment and no cure. My Neurologist suggested several supplements that might help, and I’ve been on them for years. But I’ve continued to have very low energy and poor muscle strength all those years, too.

I’m ecstatic that I am seeing so much improvement in my energy level and cold intolerance now that I’ve implemented just some of the EB strategies!

Sunbathing and Sauna

The most surprising lifestyle change I’ve made is to start sunbathing at midday! So my normal habit has been to wear a long sleeve jacket year round – in the air conditioned house and outside of the house. That was even in the Alabama Summers! I was miserable all Winter.

So this pasty white old lady bought a bathing suit. I started to lay out in the sun super slowly – maybe a minute to a side to start with. It took a while to work up to the 30 minutes I can now enjoy. And, just as the program explained, it has given me a tremendous amount of energy. And, for the first time in my life, I have a tan! Someone at church complimented me on wearing makeup (I do not). I laughed when I told her it was my tan.

When sunbathing is not possible, thanks to the weather, I have a DIY sauna setup in the bathroom. I use three RubyLux 850nm infra-red bulbs and a small ceramic heater. It doesn’t help with my tan, but it is supposed to be energizing. The process is called photobiomodulation. The heat feels great, although I’m building up gradually. I sure don’t want to get burned. I’ve worked up to about 15 minutes a day. I don’t sweat, even though the room gets up in the 80’s, and I exercise some while in there. Ideally the room should be much hotter, but it’s make-shift at best. Sweating is one of the ways to get toxins out of the body. So I’m hoping with time I will start sweating again and get more benefits.

Cold Intolerance

I wasn’t expecting to see a difference in my cold intolerance, but I’m making progress. I don’t have to bundle up with a blanket all the way to my chin to sit through church every time any more. Oh I still wear thermal underwear and double socks for church. But now I usually only drape the blanket across my legs to block the draft under the pews.

It remains to be seen how I do during the cold Winter weather. I am still walking in the mornings, if it’s not raining. Previously I would never have even considered being outside in 60° weather for any longer than absolutely necessary. I was always in a hurry to get to and from the car. Now I can walk about a quarter mile, even in the cold air. That’s a gigantic improvement for me.

I continue to praise God for His healing Hand, for leading us to this program, and for the wonderful joy of feeling better! And I hope to continue learning more ways to improve my quality of life.

Posted in Quality of Life | Tagged cold intolerance, energy, MITO, Mitochondrial Myopathy, photobiomodulation, sauna, sunbathing, The Energy Blueprint | Leave a reply

Recent Posts

  • Mitochondrial Disease Treatment in Phase 3 Trial October 21, 2019
  • God’s Healing Sunlight March 31, 2018
  • Immune System Issues, Slowly Recuperating January 25, 2018
  • Flu Shot? Yes or No? December 20, 2017
  • Nutrition Information Sources December 14, 2017

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