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On the Absence of Light and ME/CFS

On the Absence of Light and ME/CFS

by Jody Smith​

On my side of the world, change is brewing. Here in North America, the cold and dark brooding of winter looms and glowers. In some areas it has already hit, hard. Temperatures dropping, days shortening ... for someone like me who lives with ME/CFS and seasonal affective disorder, this is a daunting time. I am staring down the disappearance of light.

tree-Image-by-Johannes-Plenio-from-Pixabay-3831528_700x394.jpg

Just to make things more interesting many parts of the continent, including my own, have recently plunged off the precipice of a change from Daylight Savings Time. At that point the gentle receding of daylight turns into a body slam. Not a couple of minutes' further loss each day but the hammer blow of night fall an hour earlier than we're prepared for.

Sounds kind of melodramatic, I suppose. But I tell you for me, it's a melodramatic time encroaching. And I know I'm not the only one.

I am solar powered, always have been. I do best in the summer time, when the sun is bright and long on the land. My health and energy and sharpness rally during the summer season. Things start to ... run down when summer says good-bye. I wear out much faster, mentally and physically. I am less sturdy, more fragile.

I used to have a major downshift in energy and all that is good starting at the end of August. It would deepen through September and October. And then -- Wham! A full-fledged crash would smash me down at the end of November or early December.

My wedding anniversary happens to fall into that Bermuda Triangle of days. Crashes have made them a lousy experience many times in my 40 years of marriage. Kind of a cosmic joke on me. One year, at age 49, I had to head for my doctor and the hospital because I thought I was having a stroke.

Ah, memories.

About a decade ago I happened to read that vitamin D3 tablets might help me. And by golly, they do. I no longer crash in December. The gentle dumbing down that usually happens in the fall and accelerates through the autumn months doesn't toss me down the well anymore. So grateful for that.

I do have to watch it this time of year, though. Be more the slacker once again. But at least I am not the invalid anymore.

This month I have added cod liver oil with its vitamins A and D to my daily supplements. I will be spending more time resting and reading. Less time walking or writing. My knitting needles and crochet hooks will be coming out of their baskets. More dreaming and less doing.

I have read up on light boxes for SAD and finally decided to get one. Technically I'm not the typical person who benefits from a light box because they struggle with depression.

I struggle with ME/CFS symptoms such as slow mental processing, word loss, confusion and brain fog — what I like to term "the head stone" — and physical issues like vertigo, roaring in my ears, breathlessness, parasthesia (weird sensations like tingling, vibrating, numbness) — what I've dubbed "the body stone."

These symptoms have a way of surging in on me come autumn and ease up in the spring, so I'm hoping light therapy might help me. I've been using my light for a few weeks now and I think it may be making some difference. I will keep you posted on that.

My years of illness have caused me to be a little afraid of the coming winter. I wasn't always that way. This fear is intertwined with the fact that my worst times of illness with ME/CFS have occurred during that time of year.

The dark of the shortened days is a picture of how I feel. As darkness falls ... I retreat further into my books in my chair, on my bed ... and that in and of itself sometimes scares me. Because it is a reminder of how life was during the worst of my illness.

A reminder of how small and monotone existence had become, and without hope. A reminder that my life can disappear without warning or possibility of appeal.

Any health issues and setbacks that I experience will prompt this same reaction of fear and foreboding. I have to reassure myself that a few days of naps and lower activity levels can actually protect and prolong my ability to do and to think. But that silent waiting bed and the enclosure of my bedroom's four walls can still scare me.

I am one of the fortunate ones. My times isolated in my bedroom are few and far between these days. If I'm in there during the day it's because I want to be.

I might choose to have some quiet time and start out reading on my bed, and will usually fall asleep with 10 to 20 minutes. Well, that's a good thing, a healing thing.

I might wander in there to read or watch TV if the guys in my house are watching sports in the living room. And I am free to wander back out whenever I wish.

I have to remind myself of that. Often.

Because I deal with a sense of dread about the dark. I wasn't particularly afraid of the dark when I was a kid. I used to enjoy walks after sunset, and often lay awake late into the night as a teenager. In fact at that age, night was my favourite time of day.

How things have changed. I don't like the dark or the cold. Cold makes me ache. I long for the light and warmth of the sun all year round. Luckily for me, where I live has the longest summers in Canada. Because apparently I need it.

I try to think of hibernating as a good thing. More rest must be a good thing for someone with ME/CFS, right?

And you know, it's not like I'm forced into hibernating in any real sense of the word. I will still go out a couple of times a week to visit my father at his nursing home. I will still run my errands and do things in my town.

I'll just be bundled up while I'm doing it. And missing the sun. And doing less of everything. And waiting for the sun's return.

Are you impacted by the shifting seasons? If you live in an area that has a time change, are you affected by it? How do you handle these challenges in your life?


Image by Johannes Plenio from Pixabay
 

Comments

So true....and usually involves work and exercise . Even when logs are delivered, they still have to be put through the splitter and stacked.
Ugh. Yes, been there and done that. My husband had to split cords of wood with an axe, which wreaked havoc on his fibromyalgia. We are a gimpy bunch at my house. When we lived at the house with the woodstoves, we had 5 children who we would put into service stacking wood. I got pretty good at using a saw in those years.
 
There's a thread here where we've been discussing some of these issues

https://forums.phoenixrising.me/thr...defending-our-summer-rays.62357/#post-2243179

I'm very interested in some new research coming out on the many ways UV light affects the immune system. It has a range of immuno-suppressive effects. For some ME/CFS sufferers that might be just what they need!

IMMUNE BOOST OR IMMUNE SUPPRESSION?

Some of us have suppressed immune systems and catch a lot of colds while others are immune to every cold. We also show variation in willingness to be in the light - some people love it, others hate it. I am starting to wonder if these might be linked!

i.e. if you catch every damn cold, then going in UV light might suppress your immune system further and make things worse still. If like me you have barely had a sniffle in years, light might help quash your overactive immune system (and it does help me I think - my winters are always worse.)

SUNNY BUT NOT HOT

I think it's important to distiguish between intense hot sunlight and UV at lower temperatures. Too hot and sunlight makes my blood vessels expand and causes acute unpleasant feelings. I can't sunbake! What I can do is get out in milder temperatures in Spring or summer mornings and catch a bit of sun. I wonder if some people who might benefit from more light are avoiding it because they can't stand heat.
 
Well, even though it can be hard to stay warm, I also find it hard to cool down when it's hot. Out of the two I definitely prefer cold dry weather. The heat does make me wilt. I prefer having to warm myself up than trying to cool down.
Interestingly in my case, I seem to do much better when both winter and summer are settled in. I get more remissions. I have no idea why.
My hardest times are always Spring and Autumn.

As we are sinking further down towards the winter solstice -so far I have started to feel much better. There have been so many lightless days too with heavy dark cloud, as well as evening coming in not much later than 4pm! Not pleasant. So it's weird that I have felt a little better!
 
I don't really mind snow all that much, but recently I was looking at the white stuff covering the ground, and found it a bit depressing to realize that it's going to be there for the next five months or so. :meh:
 
Well, even though it can be hard to stay warm, I also find it hard to cool down when it's hot. Out of the two I definitely prefer cold dry weather. The heat does make me wilt. I prefer having to warm myself up than trying to cool down.
Interestingly in my case, I seem to do much better when both winter and summer are settled in. I get more remissions. I have no idea why.
My hardest times are always Spring and Autumn.

As we are sinking further down towards the winter solstice -so far I have started to feel much better. There have been so many lightless days too with heavy dark cloud, as well as evening coming in not much later than 4pm! Not pleasant. So it's weird that I have felt a little better!
Wolfcub,

I can't explain such things either but I have had similar experiences. Spring and autumn are so changeable, I find that difficult since I became ill. And like you I don't adjust well to temperature changes. Sweaters will go on and come off all day long. Figuring out how to dress if I'm going out is a bigger deal than it used to be. Is this a light jacket day? a warmer one? If I get cold for too long my muscles ache. If I'm too warm I also wilt like you mentioned you do. There can be repercussions and I have a harder time with the discomfort of it all.

I prefer warm (not hot) weather but even so it is a relief when winter actually kicks in which doesn't often happen till late November. Then the clothes circus finally ends and it's a winter coat, hat, etc. Sweaters in the house stay on, instead of being part of 3 layers flying on and off all day long.

Come spring, it all begins again.

My son Jesse is more or less the reverse of me. He hates sunlight, and warm weather. He begins to perk up a bit when the weather turns crisp and cool, and is much happier when it's actually winter. Around here it will mostly flirt around freezing and a little below. Our summers are very humid and I theorize that for both of us the lower humidity we have in winter may be a factor. But we don't know:)
 
I don't really mind snow all that much, but recently I was looking at the white stuff covering the ground, and found it a bit depressing to realize that it's going to be there for the next five months or so. :meh:
Wishful,

I don't blame you, that is a long snow season. Where I am we might get maybe 3 or 4 months of snow, and that feels too long too.
 
There's a thread here where we've been discussing some of these issues

https://forums.phoenixrising.me/thr...defending-our-summer-rays.62357/#post-2243179

I'm very interested in some new research coming out on the many ways UV light affects the immune system. It has a range of immuno-suppressive effects. For some ME/CFS sufferers that might be just what they need!

IMMUNE BOOST OR IMMUNE SUPPRESSION?

Some of us have suppressed immune systems and catch a lot of colds while others are immune to every cold. We also show variation in willingness to be in the light - some people love it, others hate it. I am starting to wonder if these might be linked!

i.e. if you catch every damn cold, then going in UV light might suppress your immune system further and make things worse still. If like me you have barely had a sniffle in years, light might help quash your overactive immune system (and it does help me I think - my winters are always worse.)

SUNNY BUT NOT HOT

I think it's important to distiguish between intense hot sunlight and UV at lower temperatures. Too hot and sunlight makes my blood vessels expand and causes acute unpleasant feelings. I can't sunbake! What I can do is get out in milder temperatures in Spring or summer mornings and catch a bit of sun. I wonder if some people who might benefit from more light are avoiding it because they can't stand heat.
Murph,

I thrive (by ME/CFS standards) when I can spend time in the summer sun. My sick son on the other hand avoids it wherever possible.

Neither one of us tends to have a cold for any length of time. A few years ago we never caught colds. It is rare for us to have something that runs a "normal" course though it has happened a few times in recent years.

Like you I am sicker in the winter, and I have long suspected it has to do with the decrease in sunlight. The timing of my increased symptoms and the easing of them tees up closely with the change of seasons.
 
https://www.wbur.org/hereandnow/2019/12/17/lighting-alzheimers-sleep-depression

Other neurological conditions show these and more benefits. What helps is 4X the usual indoor light level just for seeing, or else a lot of good sunlight indoors, until 6 pm was my takeaway. Also taking a walk outside each morning at the same time if possible. I havent read the study but only listened to this interview. There may be a link to the study here too.
 
https://www.wbur.org/hereandnow/2019/12/17/lighting-alzheimers-sleep-depression

Other neurological conditions show these and more benefits. What helps is 4X the usual indoor light level just for seeing, or else a lot of good sunlight indoors, until 6 pm was my takeaway. Also taking a walk outside each morning at the same time if possible. I havent read the study but only listened to this interview. There may be a link to the study here too.
Thanks for the link and the info, Sing. I suspect that for some of us light can make an enormous difference.
 
I am solar powered, always have been. I do best in the summer time, when the sun is bright and long on the land. My health and energy and sharpness rally during the summer season. Things start to ... run down when summer says good-bye. I wear out much faster, mentally and physically. I am less sturdy, more fragile.
Me too - although I don't like the bright light. I'm also a typical strawberry blonde with near albino complexion so avoiding sun has been a lifelong habit. But I always crash starting in the fall. Like you I find the Vit D helpful - but it still happens. I looked at the SAD lights and they seem a blue / white light spectrum. I use one that is infrared. Feels so nice! Even my dog tries to get in on it. In fact - this thread was a great reminder of that and I'm off to plug it in now.

Are you using or is anyone else using one of the SAD lights? Do you find it helpful?
 
@soulflower I didn’t know there are infrared lights for SAD. That is something I would like to try. I am light sensitive too, in the ordinary way, but definitely do best in spring and summer, worse by October when living close to the Canadian border. I like the infrared end of the spectrum for its quality of heat and have heard that it is helpful for arthritis pain. Can you tell me more of what you understand about it?
 
@Sing

My apologies, I really can't tell you much on a scientific level.

I was experiencing a very deep level pain that was almost indescribable. It was well over a decade plus ago, but I stumbled on a study about infrared effects on cellular changes. I know some people who raise chickens locally and they use infrared lights in their coops, so I hit up the farm store just to see and it was easily affordable so was like why not. Picked up a bulb and a clamp lamp hood (you need to get a special clamp lamp with a ceramic base, the regular ones with plastic base will melt! This bulb does get hot and could be a fire hazard if not used with care IMHO.) It wasn't very expensive - I think I spent $30-40. (Again over a decade ago.) I just clamp it above the bed lay down in the light - often removing most clothing as it feels best on bare skin. It does feel penetrating - relieves/ dulls that deep pain, warms me up and just makes me feel better all around so I just go with it. Maybe it isn't healthy - but my body digs it and my body doesn't dig much so I keep it going.

I have been in such a cave with my illness for decades, being told I was just crazy and no name for it until a year ago that I tend to just keep this stuff to myself now. I did a quick look up online before responding (just to see how crazy I might be) and was shocked to see it is an actual type of "therapy" now. It wasn't back then, I was laughed at and side eyed by everyone who knew. But now I see, I should have marketed infrared chicken bulbs under a fancy name for hundreds of dollars. LOL!! I very much enjoy the heat given off by the bulb I use - I see alot of LED versions for big bucks available - that is not what I use. Nor do I think that would give me the heat aspect which I do desire as I'm often cold. I can not speak to the effectiveness of LED infrared type. I included a photo of the one I use. Available at most farm stores - usually on sale in Spring for hatching eggs.
heat lamp.jpg
 
Me too - although I don't like the bright light. I'm also a typical strawberry blonde with near albino complexion so avoiding sun has been a lifelong habit. But I always crash starting in the fall. Like you I find the Vit D helpful - but it still happens. I looked at the SAD lights and they seem a blue / white light spectrum. I use one that is infrared. Feels so nice! Even my dog tries to get in on it. In fact - this thread was a great reminder of that and I'm off to plug it in now.

Are you using or is anyone else using one of the SAD lights? Do you find it helpful?
Well soulflower, I'm glad to have served as a reminder about your light.:) I was using a SAD light for a few weeks in the fall, with the hopes of somehow getting an early start and making a difference. It was my first time with one of these lights. I can't say yet whether it will be helpful or not. I was already kind of crashy when I started using it. Seemed to get a bit better after the first few days ... and then got really bad. There were other factors at the time that could have been causing my drop, but I can't say for sure.

So I am waiting to stabilize again, and then will give it another try. It seemed like maybe I was using it too much -- apparently there are people who can have bad reactions. And generally if something can be too much -- that will apply to me. So I dunno. I will give it another whirl, and do any increases very slowly.
 
@Sing

My apologies, I really can't tell you much on a scientific level.

I was experiencing a very deep level pain that was almost indescribable. It was well over a decade plus ago, but I stumbled on a study about infrared effects on cellular changes. I know some people who raise chickens locally and they use infrared lights in their coops, so I hit up the farm store just to see and it was easily affordable so was like why not. Picked up a bulb and a clamp lamp hood (you need to get a special clamp lamp with a ceramic base, the regular ones with plastic base will melt! This bulb does get hot and could be a fire hazard if not used with care IMHO.) It wasn't very expensive - I think I spent $30-40. (Again over a decade ago.) I just clamp it above the bed lay down in the light - often removing most clothing as it feels best on bare skin. It does feel penetrating - relieves/ dulls that deep pain, warms me up and just makes me feel better all around so I just go with it. Maybe it isn't healthy - but my body digs it and my body doesn't dig much so I keep it going.

I have been in such a cave with my illness for decades, being told I was just crazy and no name for it until a year ago that I tend to just keep this stuff to myself now. I did a quick look up online before responding (just to see how crazy I might be) and was shocked to see it is an actual type of "therapy" now. It wasn't back then, I was laughed at and side eyed by everyone who knew. But now I see, I should have marketed infrared chicken bulbs under a fancy name for hundreds of dollars. LOL!! I very much enjoy the heat given off by the bulb I use - I see alot of LED versions for big bucks available - that is not what I use. Nor do I think that would give me the heat aspect which I do desire as I'm often cold. I can not speak to the effectiveness of LED infrared type. I included a photo of the one I use. Available at most farm stores - usually on sale in Spring for hatching eggs. View attachment 35722
Thank you for such an interesting and thorough reply! Would you take a picture of the ceramic base too, just for an example?

Like you I am often cold, often in stiffness and some degree of pain, and lack much physical comfort. It is hard and discouraging. I would like a heat lamp!
 
@Sing That white part is normally plastic on a regular style clamp light. It was wonderful to get this back out and plugged in over the weekend. I also did some more recent research online while basking and there are sites now with more scientific explanations aside from "it feels good". I hope it works for you!! Every little bit helps some days - well, most days. ;)




ceramic base clamp light.jpg
 
@Jody

Hope it works out for you! If so, please let me know. My neighbors are already poking around with all the odd lights shining out the windows at all hours - why not add one more color to the mix. LOL Let's really give them something to talk about. :redface:
 
Interesting about the IR lamp. I live in a county seat farm burg, should be easy to get one here.

My years of illness have caused me to be a little afraid of the coming winter. I wasn't always that way.
Yep, winter has gone from a playful adventure to nothing but an endurance test.
:(
Then add in that in the last couple decades there have been 4 times I've fallen in snow and ice and wound up with broken bones ...
:nervous:
 
Yes, winter in the NE has felt like a long, long endurance test. It is very hard to be confined so much, mostly in one room that has enough heat. With neuropathy all over, especially the nerves around my neck, I can’t wear a hat and am « on a timer » for even the best materials for a scarf. Then there are the many cold shocks during the day when moving in and out of warmer and colder spaces. As for falling, I am sorry @southwestforests that you got injured! So easy to do! It has been miraculous that I haven’t so far, even with being as careful as I try to be.

I have a special set of boots by the door that I can step into, and I have those $20 or $25 steel ice grippers on the soles. This set of boots is just for outside. I take slippers or other footwear in a bag for using inside, like if I am going to church. Anyway, it takes defensive planning and vigilance some days when there is ice on the ground, especially ice hidden under the snow.

The last two winters I have been out of the snow in a milder climate (still cold), but no guarantee about next winter.
 
What has been getting to me the last 3-4 weeks is the endless "twilight", of deeply heavy grey skies.
We had two days of sunshine in those weeks. That twilight lasts all day. It's impossible even to read the time on the clock when I wake up. Heavy grey dark with hardly ever a crack in the sky.
It does have an emotional effect. I don't think it has influenced my ME/CFS particularly but it has made me feel a bit low emotionally. And it would be nice to see some light, even if it brought real cold with it.
I miss the stars and the Moon too.

I always remember what my mother said, "It's not a horrible day! It's just weather !"

I went outside and tried experimenting to see if my sweet thoughts could make a crack in the clouds (yes I know....totally bananas) So I gathered up all my sweet thoughts and imagined the sun coming out....
....And then it rained :lol::aghhh: Well, would you believe it??

More vitamin D3 ordered from Amazon :cool:
 
I'm under the impression that you have a different scenario in the UK than we have where I am, in southwestern Ontario. Your twilight that you mention is a much more extensive darkness I think. Where I am, right now we've got full daylight until evening at about 5 pm, and dawn at about 8 am. In at least parts of the UK, it is different from that, is it not? Longer darkness hours I think?

Trying to marshall sweet thoughts for the weather can also lead to a cognitive collapse ...:)

I myself am in love with vit. D3, especially in the winter:)