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.

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?