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Posted

Always on my quest to find new and different things that can make a difference...

Do any of you who are mostly homebound worry about your lack of time in natural sunlight? My son is spending so little time outdoors. On the days he goes to school, he's outside for maybe 30 seconds while he goes from the car to the school entrance and back again later. We live in Boston where it's currently 17 degrees and the sidewalks are icy, so going for a walk just isn't an option. I guess this winter isn't really much different from past years - he's not really ever outside much on a typical winter day, but now that he's having health problems (POTS), I wonder if he has a greater need than ever for some natural light. So yesterday I made him sit on a window seat in the house that was bathed in (cool) sunlight for about 20 minutes. He grumbled and told me what a waste of time it was, but I swear he had better energy the rest of the day. I'm going to make sure he does it again today, but not every day is sunny, or he's not always home during that hour when the window seat is in the sun. Which makes me wonder about those therapy light contraptions you can get for people with seasonal affective disorder. I was just wondering if anyone has any thoughts on this. Thanks!

Lenna

Posted

Hi, Lenna:

You are such a thoughtful Mom to become so involved in learning and researching about your son's illness. I can't imagine what it is like to have a child facing chronic illness, but I know exactly what it is like to be a child with a chronic illness. I've struggled with illness on and off since I was about 10 and have been chronically ill since the age of 17.

Is your son showing signs of depression or S.A.D.? If so, then looking into light therapy might be a good way to go; although, I am not familiar with any research associating that particular therapy with POTS.

However, one of the most frustrating parts of having a chronic illness is being reminded that we (those diagnosed with a chronic illness) are sick. Day in and day out little things remind us that we just can't do what we used to do as we deal with the impact illness has on our lives. Many of those things we can't control (like tiring more quickly when we're out and about or needing medication). Because of that, it's important to us to keep control over the areas where we can actually feel "normal."

Extra therapies, unless proven helpful for a specific condition, can really pile on and become intrusive as a reminder that we're not normal. What I would suggest is, unless your son is showing specific symptoms of depression or S.A.D., allow him to retain control in this area of his life by not pressuring him to change his routine to include light therapy.

In the mean time, absolutely open up all the blinds and drapes in your home and keep it well lit. Personally, I am always in a better mood in a bright area than when I'm sitting in the dark (my Grandmother was right on that one!).

It is so incredibly difficult to know what choices we need to make to keep the illness in check. When should we push through the symptoms? When should we accept that a particular part of our life must be altered? Which medications and therapies are best? It's a conundrum to dysautonomia specialists, let alone to the layperson diagnosee! But it is so important to retain our ability to choose. It gives us some semblance of control over our own lives. I think one of the best things you could possibly do for your son is empower him by allowing him to decide (with your guidance and life experience) what works best for him. :(

Keep up the good fight! You are an amazing woman to be so supportive and encouraging to your son through such a trying time.

Posted

That was such a helpful reply! I never looked at it that way. I do spend a lot of the day telling my son what to do -- drink, walk, drink some more, have something to eat, take your meds, etc. It must be so demoralizing for him at times. I'm going to try to lay back a little bit more. Thank you!

-Lenna

Posted

You might want to check on supplementing his regime with vitamin D, as, after a year of staying mostly indoors from POTS, my vit. D went way below range. Before that, I was outside alot with my kids sports. So I know it can drop kind of fast being inside. The vit. D helps with so much, and he just might find it helps in ways he didn't expect!

Posted

Nothing replaces REAL SUNLIGHT even though full spectrum light manufacturers will say otherwise.

Years ago I tried the bulbs (VERY EXPENSIVE) and they did nothing for me. They can also produce harmful radioactive rays.

They can also make folks antsy, agitated and in bipolar, trigger mania episodes.

I live in Ohio where the sun rarely shines from Nove to March..it's tough for many of us. But I used to go to a group support and even tho folks shelled out big bucks for the VERY PRICEY "Light boxes" none got relief.

If only we could get REAL SUNLIGHT daily for at least 20 minutes...i think it would help many of us.

If there was even a slight possibilty I would like to move to a sunnier climate but there is ZERO option for me..but I can appreciate your problem with lack of son.

Good luck

Posted

Thanks for posting this! I had thought and wondered on this as well. I have always been pretty skeptical about them. But, I have read about everyones experience with sunlight and Vitamin D deficiency, and had thought about it. I have no real clue. I have though started looking at sunlight in a whole new light! (pun intended) :( I will try to get more sun! I also have always hated dark rooms, I yell all the time why are all the lights off? I NEED light! I have always been this way! And like someone mentioned before living in Ohio doesn't make it easy! :P:rolleyes::P (i couldn't live in Alaska!)

Maybe I should move to Hawaii! (oh, yeah it is hot there.. that won't work!) B)

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