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

I certainly feel for you Jody; to be staring down the barrel of at least 3-4 months' of feeling worse.

I don't (yet !) get SAD or think I am affected much by light or lack of it. But I only have 7 seasons of experience at this so far. But I have noticed that it's the seasonal "changeovers" that cause me to crash and relapse more often; the early Spring and the early Autumn. It seems -for me anyway -that once a season is in full swing, I stabilise.
That seems to be a pattern I have noticed up until now.
 
Albertan here. I notice the reduction in solar power each day (off-grid solar). I notice that there's less time each day light enough to do stuff outside. However, I don't notice any change in my ME, whether from seasonal change or daylight savings time.

I did notice that it was painfully cold outside this morning (-24C). :ninja: (Balaclava, not ninja outfit).
 
It has gotten harder to adjust to time changes I've noticed here in the last couple of years as this ME has intensified. The body seems to more stubbornly not make a ready adjust to its basic cycles for rest and feedings.

Recently I noticed that polyester is warmer than cotton. But I am a cotton person. More defenses against chill are needed.
 
I certainly feel for you Jody; to be staring down the barrel of at least 3-4 months' of feeling worse.

I don't (yet !) get SAD or think I am affected much by light or lack of it. But I only have 7 seasons of experience at this so far. But I have noticed that it's the seasonal "changeovers" that cause me to crash and relapse more often; the early Spring and the early Autumn. It seems -for me anyway -that once a season is in full swing, I stabilise.
That seems to be a pattern I have noticed up until now.
Wolfcub,

Thanks for the empathy:) Transitions seem often to be challenging, whether it's barometric pressure, precipitation, length of daylight hours, temperature changes ... I hope you don't experience SAD. I don't think it necessarily develops over time with ME/CFS. I think I already had a milder version of it before I got sick.
 
Albertan here. I notice the reduction in solar power each day (off-grid solar). I notice that there's less time each day light enough to do stuff outside. However, I don't notice any change in my ME, whether from seasonal change or daylight savings time.

I did notice that it was painfully cold outside this morning (-24C). :ninja: (Balaclava, not ninja outfit).
Wishful,

Alberta? You have my sympathy! I like in the warmest part of Ontario, and you ... well. I've heard the horror stories about Alberta:) Thank goodness the season change and DST doesn't affect you. That Alberta cold for such a long winter season is enough to contend with. I salute you!
 
It has gotten harder to adjust to time changes I've noticed here in the last couple of years as this ME has intensified. The body seems to more stubbornly not make a ready adjust to its basic cycles for rest and feedings.

Recently I noticed that polyester is warmer than cotton. But I am a cotton person. More defenses against chill are needed.
Rufous,

Such changes can be a real jolt for the body that's for sure. Polyester is warmer than cotton? I didn't know that. I wear lots of layers all winter long. A long sleeved undershirt, a long-sleeved buttoned shirt, and a cardigan. Sometimes 2 pairs of socks. Staying warm is a priority for me this time of year.
 
I also find it more challenging to stay warm nowadays, even though my ME/CFS will allow me to exercise within reason. Temperature regulation isn't easy, as it used to be. I find myself horribly, terribly cold after eating and after sleeping.
No central heating in my house either so heat comes from a log fire, and in the other room, a stove. I now light both in the daytime, which I never used to do.

Layers are the answer Layers = trapped warm air.
I bought 3-tog socks (thickest socks ever!) and wear Afghan slipper socks in the house. 2 layers of clothes on a moderate winter day....3 layers on a cold winter day.
Silk and wool are warm. For vegans, there are thermal options. Mountain wear usually is a good option and there are many thermal clothes which don't contain animal products. Even fake fur is warm, and those girly-looking "fluffy" long tops! I was amazed how much warm air those things trap.

If you're not vegan, there is nothing like a genuine Norwegian sweater/jacket. They are expensive though.
 
Polyester is warmer than cotton?
well, I "think so"! Years ago I had an acrylic sweater and could hardly ever wear it, too warm.

My lousier loungeware, are warmer...of course it depends on the type of fabric.

Want silk underware!
 
I find myself horribly, terribly cold after eating and after sleeping.
Recently, I;ve noticed much greater sensitivity to the temperature of the food. That never used to phase me. Now, no thats too cold. Or Im internally cold from one ice cube in the drink. But then I"m overheated and demanding many ice cubes.
 
I also find it more challenging to stay warm nowadays, even though my ME/CFS will allow me to exercise within reason. Temperature regulation isn't easy, as it used to be. I find myself horribly, terribly cold after eating and after sleeping.
No central heating in my house either so heat comes from a log fire, and in the other room, a stove. I now light both in the daytime, which I never used to do.

Layers are the answer Layers = trapped warm air.
I bought 3-tog socks (thickest socks ever!) and wear Afghan slipper socks in the house. 2 layers of clothes on a moderate winter day....3 layers on a cold winter day.
Silk and wool are warm. For vegans, there are thermal options. Mountain wear usually is a good option and there are many thermal clothes which don't contain animal products. Even fake fur is warm, and those girly-looking "fluffy" long tops! I was amazed how much warm air those things trap.

If you're not vegan, there is nothing like a genuine Norwegian sweater/jacket. They are expensive though.
Wolfcub,

I used to live in a house heated only by 2 woodstoves and a small electric heater. Well, we also had a water bed:) but that was in a room with otherwise no heat. It was a comfort though. Staying warm in such situations is more complex than adjusting a thermostat.

I am a fan of layers from September to June. I am forever taking one off ... putting it back on ... taking it off ...
 
well, I "think so"! Years ago I had an acrylic sweater and could hardly ever wear it, too warm.

My lousier loungeware, are warmer...of course it depends on the type of fabric.

Want silk underware!
Acrylic doesn't breathe as natural fibers do so perhaps they are warmer. I have a skin reaction to wool so I don't have much experience with it. I hope you get some silk underwear and enjoy it:)
 
Alberta? You have my sympathy! I like in the warmest part of Ontario, and you ... well. I've heard the horror stories about Alberta:)
Actually, I picked this part of Canada for its climate. I hate being overwarm; I set my thermostat to 12C. Western central Alberta seems to have the fewest unpleasantly hot days. Even the far north seems to get hotter days. I'm in a little valley that tends to be about 3C cooler than open areas (cool air flowing down).

Of course, this also means long cold winters. I don't mind that too much when it's a dry cold. I could hike (or snowshoe) for hours at -40C. +40C makes me not want to move.

Some PWME are sensitive to temperature. Some aren't. So, I'd put temperature sensitivity into the 'side issues for some people' category. Light exposure too.
 
Actually, I picked this part of Canada for its climate. I hate being overwarm; I set my thermostat to 12C. Western central Alberta seems to have the fewest unpleasantly hot days. Even the far north seems to get hotter days. I'm in a little valley that tends to be about 3C cooler than open areas (cool air flowing down).

Of course, this also means long cold winters. I don't mind that too much when it's a dry cold. I could hike (or snowshoe) for hours at -40C. +40C makes me not want to move.

Some PWME are sensitive to temperature. Some aren't. So, I'd put temperature sensitivity into the 'side issues for some people' category. Light exposure too.
Wishful,

You sound somewhat like my son who also has ME/CFS. He hates the heat and avoids the sun. Prefers a darkened room with shades drawn. Our summers are hot and he stays in the air conditioning as much as possible. Once it's October and further into autumn, he perks up. He like you far prefers cold and dry air and temps.
 
very interesting.For me its the other way round.more light is an additional stress for me.after the winter season my sensitivity to light is always much better and worsens again when days become long and bright.
 
The silver lining of it getting dark early is that I feel that my fatigue is justified, in a way. In the summer when I'm exhausted at 5:00 and the sun's still high in the sky I feel guilty for missing the rest of the day. But in the winter I think to myself, "It's already dark out, so it's okay to feel tired and get into pajamas!"
 
Staying warm in such situations is more complex than adjusting a thermostat.
So true....and usually involves work and exercise . Even when logs are delivered, they still have to be put through the splitter and stacked.
 
The silver lining of it getting dark early is that I feel that my fatigue is justified, in a way. In the summer when I'm exhausted at 5:00 and the sun's still high in the sky I feel guilty for missing the rest of the day. But in the winter I think to myself, "It's already dark out, so it's okay to feel tired and get into pajamas!"
Haha I feel the same thing ! I get a guilt feeling when the light evenings are here...I see people go by walking their dogs, riding their horses, at 9pm and so on. And the sun is shining ! And even though it's so beautiful, all I really want is for it to go dark so I can happily end the day. :D
 
very interesting.For me its the other way round.more light is an additional stress for me.after the winter season my sensitivity to light is always much better and worsens again when days become long and bright.
Pearshaped,

Very much like my son. Seems like there is a lot of variety with this -- as is the case with so much connected with ME/CFS.
 
The silver lining of it getting dark early is that I feel that my fatigue is justified, in a way. In the summer when I'm exhausted at 5:00 and the sun's still high in the sky I feel guilty for missing the rest of the day. But in the winter I think to myself, "It's already dark out, so it's okay to feel tired and get into pajamas!"
RebeccaRe,

So for you, it's the time of year to welcome hibernating:) I need to try to learn how to do that.