I wear my sunglasses at night

[BEG]

and also in the morning, and also in the afternoon. Light makes my brain ache. Do you have any coping strategies to share?

 

[BEG]

Here comes the sun . . .

http://www.youtube.com/watch?v=VxIwRDs1Yc8


What a beautiful overcast morning, savoring the the first cup of coffee with the shades wide open letting in natural light. Nice view of the willow tree with new leaves. A pink camelia loaded heavily with blossoms is visible beside my chair. I look into the sunroom from another window. In this comfortable daylight, I rejoice.

Here comes the sun. On with the sunglasses. The sun is blinding as it hits the glass table top outside , so I close the doors and blinds to the sunroom. Gone are the willow and pink camellias. The sun comes into the house now with shadowy shapes through the blinds.

On with my visor and muted day.

 

[BEG]

Sounds of Silence

http://www.youtube.com/watch?v=OZtQh5EIgWQ


My days are silent. Almost. A clock ticks with the muted sound of a metronome. My little barker is quiet and intermittently napping, his little breaths like a tiny rhythmic ocean so far away. Birds are so happy in the sun and they sing their musical notes like a beautiful choir. My laptop has a humming noise. Didn't know. A morning dove calls repeatedly with its throaty music. Thankful for the cul-de-sac on which I live, I hear no traffic. However the low din of a nearby highway forms a nice background to the sounds I do hear. The barking dogs in the neighborhood are miracuously quiet at the same time. Yesterday's storms bring breezes today which occasionally buffet the house with their soft whispers.

Can't remember what my days are missing. My coffee is good.:Retro wink:

 

[BEG]

Acceptance or Where Eagles Fly

"You can't will it away; you can't pray it away," said a doctor to the CFS patient 10 years ago. When did the patient's will ever fail? Never. All it took was enough smarts and guts and everything was possible. After all, Ben Franklin said, "Energy and persistence alter all things."

The word "acceptance" was heresy, spouted by psychologists, weak-willed patients, and specialists who couldn't offer effective treatment. The patient read everything he could get his hands on, wrote letters to government officials at a maddeningly rate, tried various treatments, and pushed beyond his capacity over and over again. It was war, a costly war, and the patient would win.

With advancing years and a worsening progression of disease, the weakened patient quit fighting, concentrated on taking care of himself and gradually realized that acceptance was less disagreeable. Actually, peacefulness, being in the moment, deep breaths of 3 several times a day, and daily rest (in a darkened and quiet room) produced more energy than the battle. Acceptance was a hard thing to achieve, but a really good thing to practice.

Go ahead. Relax and fly . . . . http://www.youtube.com/watch?v=CKGs1KM93ks&feature=fvw

 

[caledonia]

Light sensitivity can be caused by adrenal fatigue. Do you also have problems tolerating heat? How about stress?

Ever notice your pupils dilating when they should be contracting? Look in the mirror. I have one pupil that dilates while the other one looks normal. Kinda freaky looking. Mine has gotten somewhat better over time.

There are various methods to strengthen your adrenals. A naturopath will be more helpful than a regular doctor.

Also some medicines can cause light sensitivity.

 

[BEG]

Thanks, Caledonia. Yes, sensitive to light, noise, with heat/cold intolerance. Stress sends me to bed. That's weird about your pupils. What does it mean? Is that an adrenal thing? I can't readily see my own. Eyes are too dark.

I'll certainly consider the naturopath and will make some phone calls. Checking side effects of medicines is a good idea. What seems to help with the intense light and noise sensitivities is a little bit of klonopin during the day. 1/4 of a .5 tablet. But it's short lasting and makes me kinda sleepy.

 

[Martlet]

Alternatively, it could be mild glaucoma. I've had it since I was a young 'un, even before ME and have never been able to tolerate bright light.

 

[Mithriel]

I have always had photophobia as part of my ME. I get a lot of vision problems including blindness. Sensitivity to heat and cold is also a symptom of ME, as are all homeostatic processes. I've never had adrenal burn out, though.

A sudden burst of light can blind me for hours.

I always wear dark glasses outdoors but often in the house as well. I have a special pair with a middling tint so I can use the computer.

Things that help me...

No one turns on a light now without telling me first so I can cover my eyes.
I also have energy saving lights which brighten gradually.
I have a pair of dark glasses which are designed to go over your own glasses when driving.
If I wear them over my sunglasses it can make it dark enough when I am outdoors. I also have a black out mask.

One thing you might not have thought of is blu blocker sunglasses. These are orange and make everything a strange colour but they do not cut the amount of light coming in so you can still watch TV, things like that. They don't always work but when they do it is better than the blindness from the dark.

I also have some talking books set up close to hand so if my sight goes I can reach it and have something to do till it passes.

Love your writing :Retro smile:

Mithriel

 

[BEG]

"Alternatively, it could be mild glaucoma. I've had it since I was a young 'un, even before ME and have never been able to tolerate bright light."

Martlet, thanks. I had my eyes examined in Jan., so I believe I can rule that one out. Sorry you have to deal with it. Do you use special eye drops?

One thing you might not have thought of is blu blocker sunglasses. These are orange and make everything a strange colour but they do not cut the amount of light coming in so you can still watch TV, things like that. They don't always work but when they do it is better than the blindness from the dark.Mithriel

Mithriel, Great ideas. Thank you. And you are too kind about the writing.

BE G

 

[caledonia]

Wierd pupils - The adrenals regular sodium levels in the body, so it could be something to do with that. In other words, if your adrenals are not working well, you will crave salt or salty foods. I've been taking 1 tsp of sea salt dissolved in a cup of water 3X and it helps with feeling wiped out, lightheaded and my pupils are pretty normal looking these days.

There's a good explanation under the heading Test Two.
http://www.stopthethyroidmadness.com/adrenal-info/

It might be a worthwhile experiment just to do the salt water and see if your eyes improve. It's a cheap and easy thing to try anyway.

 

[BEG]

Caledonia, Thanks for the suggestion. Cheap and easy makes it twice as good. I haven't been "salt loading" lately. At my physical next week, I'll bring up the adrenals. Do the docs check that with a cortisol test -- spitting in a tube at various times of the day?

 

[BEG]

Ever notice your pupils dilating when they should be contracting? Look in the mirror. I have one pupil that dilates while the other one looks normal. Kinda freaky looking. Mine has gotten somewhat better over time.

Hi Caledonia,

In my paperwork, I found something about unequal pupil size. It's called Anisocoria and is probably an autonomic phenomenon. Do you have O.I.?

 

[Wonko]

I get the pupil thing - I associate it with an aura on the right side of my head - I use it as an early warning sign that I'm overdoing it - I'm not particularly light sensitve non crashed - that said I have blinds and one curtain shut most of the time indoors - but dont have light problems outside apart from on bright summer days - tho if I'm PEM'd I'm rarely outside during the day if at all

 

[caledonia]

Thanks for the PM to get my attention. The cortisol test I have done is to collect saliva at 4 different times during the day. A regular doc won't know anything useful about the adrenals or this test, but a naturopath will.

 

[caledonia]

I have some OI symptoms (mild I guess, not enough to be diagnosed) which have also improved with the salt water.