ME/CFS and the Change of Seasons: How Does This Affect You?

ME/CFS and the Change of Seasons: How Does This Affect You?

by Jody Smith

The advent of autumn can hit Jody Smith pretty hard. She's learned a few ways to lessen the damage every year. How do you handle the change of seasons?


Summer is my best season, hands down. Fewer ME/CFS symptoms get in my way. After a while, I tend to forget that this is a summer hiatus ... but I am reminded around the end of August or early September.

And that's because the subtle but inexorable ME/CFS decline would begin. The lessening of hours of light, the warmth dissipating make for an unpleasant picture of what happens to me every autumn.

It would really throw me off at first. Even after all these years, I never am prepared for this loss. I have to make a conscious decision to slow down my pace even more, and I'd have to spend time in bed during the day again. I always hate that part. Fortunately it only lasts for a few weeks. I assume it's because by then I've shifted to a lower gear sufficiently to be able to maintain my turtle pace.

And I need to protect myself from sudden onslaughts of pain and inflammation from small and ridiculous causes like wearing my shoes for the first time since the end of spring. Or not wearing long sleeves on a coolish day. Or lifting up something that weighs more than a couple of pounds.

I make sure I have a bottle of castor oil on hand because, seriously, the chain of events that take me from stiff and sore to crippled is fast and furious if I don't smear on the oil at every twinge.

I get dizzy. Bending down or tilting my head too fast brings on a wave of vertigo. Thinking takes a back seat more quickly over more things than before. Confusion arises over trivial things like too many numbers in a sentence, or too many details to be dealt with too quickly. Thoughts disappear like vapour. A feeling of inner vibration moves in, along with a roaring in my ears.

These symptoms are a strong reminder to stop whatever I'm doing as soon as is possible and empty the head and still the body. Sound pretty Zen and a little stylish? That would be cool, but nope. Just trying to regain equilibrium. Again. And again.

Really, you'd think the change of season is enough to handle. But no, let's throw in a time change too.

It's a challenge to reconcile to the shorter days that come simply with the change of season from summer to fall. Now it's dark by dinner. But at least that decrease happens gradually over a period of time. This business of slamming everything back an extra hour for a Time Change is traumatic.

Not just for those of us who are chronically ill. The whole North American continent gets annoyed about it. Plenty of articles are written in protest of this antiquated practice, every single time we're forced through yet another of these changes.

Each article is written in the vain hope that someone who has control of this deal will read it and a light will go on (which would be made more dramatic now that it is dark by 5 p.m., for heaven's sake). But as you know, all this protest has thus far fallen on deaf ears.

So here we are.

In most parts of North America, the autumn time change happens in early November. I realize that for other parts of the world, the situation is different. And for half the world, it's not Fall Back, they have to Spring Forward. But I'm majoring on the one I'm living with right now, and I'm in North America.

Losing all those hours of daylight naturally due to season change, and that extra hour due to the time change, can have a substantial effect on some of us.

There are two of us with ME/CFS at my house, and while our symptoms are not all the same, we both tend to get hit by this change. My son Jesse is more partial to the cooler temperatures than I am but his wake/sleep hours suffer more.

One of his most debilitating symptoms for some years was totally messed-up sleeping patterns. He hasn't had a normal night's sleep for more than a decade. Over the last couple of years it has slowly improved. He's gone from being awake for 24 hours at a time then sleeping for 12 hours, to a more or less 24-hour cycle -- but sleep doesn't usually come till dawn or later, and he'd get up in the early afternoon.

Like I said, it's messed up. But at least it's somewhat predictable, it is his routine.

Except for after the time change. Then all bets are off, and not only are his hours even more off-kilter, they are even less refreshing than his usual. It can take weeks for things to re-balance. And then of course, six months later, everything gets thrown up in the air once more.

These time change snares snap us up twice a year every year. So what can a chronically ill person do?

I wish I could lay out a fool-proof universal plan. But, as with all things ME/CFS, there is no such thing in the known universe, for anything that affects us. All I can do is tell you what seems to help take the edge off for us.

And it's nothing very exciting. It's dull and plodding, which -- again -- seems to be the theme for most kinds of ME/CFS relief. But we take what we can lay our hands on and run with it. Well. Move slow or crawl.

I used to crash lightly (yes, you all know there is such a thing) in early September. And then I would crash big-time to the point of being bed-ridden most of the time in December. This eased up quite a bit 11 years ago when I stumbled upon the idea of taking vitamin D3.

I experimented with the number of tablets per day, and eventually found a dosage that kept me relatively normal and stable. I have not been a winter vegetable since that time. I go from being a dull/normal all summer long to just ... dull. But I am functional and that counts for a lot.

This year I am adding a spoonful of cod liver oil once a day, for its natural vitamin D content.

I have not tried phototherapy but it's something I'm curious about. A light box is said to put out light that is similar to the natural rays of the outdoors. Anybody have experience with this? I'd love to hear about it.

Jesse enjoys cool temperatures but I freeze up and turn into a ball of pain if the house is below 70 degrees F. It's got to be 72 degrees at least. It's hard for me to believe that those 2 degrees can mean the difference between being able to move like a normal person or being frozen in position till inflammation passes after weeks or months.

So even though it's more expensive we keep the heat up. Because not being able to move without agony is too costly in other ways.

Dressing in layers helps. Keep those joints and muscles warm and protected. I have a cardigan that is on and off, then on, then off again all day long. Extra socks. NEVER going barefoot even on carpeted floor.

If you've tried acupuncture and/or chiropractic, this might be a time of year to major on these treatments. I have had winter seasons when going for both these therapies kept an ailing arm more or less in working order all winter.

I try to be aware of how I'm sitting or standing. Some bad angles are enough to cause ongoing grief for me during the colder seasons, even though a "normal" person would not be affected at all.

And that's it, I'm afraid. That's all I got. Beyond that, I can only advise hunkering down for the colder darker months and utilizing a lower gear as much as possible. It may involve lowering expectations and that can be disappointing and frustrating. But lots of animals hibernate and maybe they know something naturally that we need to learn.

In time the sun will begin to spend more time above the horizon and the warmth will gradually be returning. If all you can do is huddle under a blanket and look at the window yearning for summer, be assured, it will come. And you will be the first to see it. Unless you are napping when it arrives.

How do you handle the change of seasons?

Photo: Pixabay
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It's really hard to understand but I have had so many more bad days since the onset of Spring. And my illness began in Spring.
I've noticed this pattern since I've been sick. I wonder if it may be allergies. I was rarely affected by pollen when I was younger. But I think that perhaps now my immune system is reacting to it.
Wow you take 10,000 IU D3, I should up mine. I take 1,800 D3/day. I should try upping it.
I had no clue your son is sick also - so sorry I commented on how I felt you were lucky having kids, it must be heart wrenching to see Jesse sick. I am like him - being awake for 24 or 48 hours, so I know my meds for sleep will work better. Hate increasing them. They worked well till the thyroid thing 15 months ago started, nothing let me sleep.

I hate the change of seasons also - but must admit that changing to spring/summer takes me awhile to get used to it - since I take so very long to get used to the ridiculous darkness at 5 PM, which at almost the end of it, I have wrapped myself in the cocoon of darkness, not feeling so alone with all the light till 9 PM.
But then I have my wonderful snowballs, MD corn (which I have no idea my Gastroparesis does not reject my sweet white corn on the cob), going to the park, and seeing all the trees.

I love your blogs - they are so well written and so true to the heart.
I too get freezing at which temperature I think is crazy - it used to be at 68 degrees I would be cold - I asked my brother, a builder - why do I get so cold at 68 degrees? He said, most people do if just watching TV, not doing much. When I am (rarely) running up/down with washes, folding then I get heated.

Now at 73/74 or even 75 I get freezing - due to thyroid thing. It is awful, I am wearing my Fall loose pants, and long cotton tee shirt with socks and it is 73 degrees in here - I don't get "hot" unless it is above '80's like 85.

But now I decided that I am going to try and get out more this summer - last summer was a bust - I could not drive, or function - the thyroid disease made my ME so much worse, and I have had symptoms I have never had before - like my feet swelled, my bottom of feet burned, my toes all ache so much all day - which is now lessening, my brain swelled up - had to take steroids, my eyes dried out so much I got 2 corneal abrasions upon opening my eyelids,etc blah blah blah.

Happy you are doing some work online. I miss work and my career so very much. It was my whole self esteem. Sometimes I wonder what I am here for on this earth. Sad, but today after a pep talk with the wig lady, I stopped at a candy store (just looked), talked to people i met which I love to do.
And when I came home - decided to get on my Pilates machine - which I have not done in years.
Only did 5 or more minutes, stopped but it sure feels good to stretch my body out.

Cheers Starlily88
S.A.D affects me in the fall/winter months. It's already on like Donkey Kong with overwhelming sadness/depression. Sigh. :(
Before the CFS/ME hit there already were a couple things already going on which were turning the cold of winter in to a painful endurance test, neuropathy and Raynaud's.
No. Will look into it. Thank you.
It's also an idea to get a cheap light lux meter, which you can buy on eBay for as little as $10. It's easy to make the mistake of placing your SAD lamp too far away from the eyes, so that the light getting into the eyes is not sufficient (light level at the eyes decreases with increasing distance from the lamp).

But with a light meter, you can hold the meter where you eyes will be when you are sitting down in front of the lamp, to ensure you are getting enough lux into your eyes.
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This is a helpful article for figuring out which model to buy:
... “My recommendation is cool white fluorescent lights in ...
Hmm, wonder how that works for we autistic folks?
Went playing in Google and after 10 minutes haven't found much.
What I did find was pretty much all along the lines of, You know, someone should do more research on that.

Hmm, yeah, I will include this find, which isn't about SAD therapy lamps, but does illustrate a principle,

Designing for Autism: Lighting

  • by Christopher N. Henry
  • October 19, 2011

What do we know about designing for individuals with autism? Those concerned with sensory issues are split on some issues. Some say we should limit daylight and exterior views, keep ceiling heights low and spatial volumes small, use restrained details, subdued colors, and reduce acoustical levels. Others advocate for high ceiling heights, large spatial volumes, and high levels of daylight with plenty of views to the outside. Still others disagree with catering to sensory needs altogether. They point out that individuals with autism struggle generalizing skills, and designing sensory heavens can do more harm than good. Thus they argue for autism classrooms, schools, and homes that mimic all the colors, sounds, lighting, and spatial volumes of “neuro-typical” environments. So who is right?

The truth is we don’t know. With so little architectural research in this area, architects tend to rely on anecdotal evidence or methodically flawed studies. Studies with proper controls and sample sizes simply do not exist. Therefore the purpose of this and subsequent articles is not to promote one approach over the other, but to bring awareness to different ideas and discuss their possible weaknesses and strengths. For the sake of length and depth, this first article, in a series of articles, will only look at the sensory sensitive approach. In addition, this article will be restricted to the issue of lighting. Subsequent articles will explore spatial considerations and the “neuro-typical” approach.

Lighting: Unlike the proponents of the “neuro-typical” approach, the majority in the sensory sensitive camp advocate against the use of direct fluorescent lighting. Some researchers maintain that individuals with autism are more vulnerable to the sub-visible flicker that can cause headaches, eyestrain, and increased repetitive behavior. In particular, Jeremy—a boy with autism described in Newsweek—wets himself within ten minutes of entering a store that uses fluorescent lights. Thus the current consensus against direct fluorescent lighting appears warranted, but reaching an agreement against poorly designed fluorescent lighting is one thing, resolving how to light an autism facility is another.
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My SAD lamp came with daylight simulating fluorescent lamps, but I find for nighttime use these are uncomfortably harsh and cold blue. So I replaced them with some standard warm white fluorescent lamps, and this is much easier on the eyes.
My SAD lamp came with daylight simulating fluorescent lamps, but I find for nighttime use these are uncomfortably harsh and cold blue. So I replaced them with some standard warm white fluorescent lamps, and this is much easier on the eyes.
Some fluorescent lamps emit UV radiation, which can have negative effects on the eye. LEDs might be a safer choice? I use this one and it has worked great so far.
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