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
 

Comments

@Jody , I had termite damage in my bedroom and I finally got the entire room remodeled. My room is in the back of a very old historic house. I had to stay in my husband's too bright, in all the activity part of the house. bless him, he slept on the couch for almost three months! I was so tired after I moved back here I crashed for weeks!

It is a floor plan that is easy for me to live in. I put in french doors so I can open the door on nice days. I gained a bathtub when I only had a standup shower I have only a few steps to the bathroom area. I got a new super soft mattress my pain is better! I steadily getting better with my "friend" my bedroom. I broke the bank!

I put a nice chair in here so people can visit in my space where I can control the sound and light. I had some of our adult kids in from out of town over the weekend, and here I am on Tuesday sitting up!

I am learning so much about pacing, food sensitivity and supplementing and I am feeling better and better.

Another big piece is that my mom and my husband understand CFS/ME much better and don't try to push me anymore. That was a 6 year battle. They thought I was depressed... we all know that old song!
 
oniman7,

Sounds a lot like a bad case of Seasonal Affective Disorder. I've always been prone to a milder version of SAD, and it was bad enough. I'm sorry to hear what you deal with every year.

When does the bad effects start to lift again each year?
Thank you for your sympathies, but to be honest after reading so many other experiences here I feel that I have little to complain about.

For me the psychological effects begin near the end of August and the more physical effects start to set in around October/November. Usually by March I feel that I'm on the upswing again and I'm feeling really great by April/May. I often say that the spring brings life, not just to nature but back to me.
 
@Jody , I had termite damage in my bedroom and I finally got the entire room remodeled. My room is in the back of a very old historic house. I had to stay in my husband's too bright, in all the activity part of the house. bless him, he slept on the couch for almost three months! I was so tired after I moved back here I crashed for weeks!

It is a floor plan that is easy for me to live in. I put in french doors so I can open the door on nice days. I gained a bathtub when I only had a standup shower I have only a few steps to the bathroom area. I got a new super soft mattress my pain is better! I steadily getting better with my "friend" my bedroom. I broke the bank!

I put a nice chair in here so people can visit in my space where I can control the sound and light. I had some of our adult kids in from out of town over the weekend, and here I am on Tuesday sitting up!

I am learning so much about pacing, food sensitivity and supplementing and I am feeling better and better.

Another big piece is that my mom and my husband understand CFS/ME much better and don't try to push me anymore. That was a 6 year battle. They thought I was depressed... we all know that old song!
Jesse's mom,

You endured a lot in the process but it sounds like you came out the other side with a lovely setup. Your bedroom IS your friend now:) You can even have company ... and you are even up to having company! at least a bit, at times.

I'm glad you are improving. Pacing, food sensitivity, supplements ... these are all things that have made a huge difference in my own life. May it continue for you.
 
Thank you for your sympathies, but to be honest after reading so many other experiences here I feel that I have little to complain about.

For me the psychological effects begin near the end of August and the more physical effects start to set in around October/November. Usually by March I feel that I'm on the upswing again and I'm feeling really great by April/May. I often say that the spring brings life, not just to nature but back to me.
oniman7,

I understand what you are saying and actually feel much the same myself. I am very fortunate to have regained as much of my life as I have. But it's also OK, I think, to recognize that you have the difficulties and issues and they disrupt your life. There will always be someone who is in worse shape than you or me, but we are still who we are, dealing with what we are dealing with. And I do sympathize with you:)
 
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.
Yes, I use a light box placed under my computer throughout the darkest months of winter (Nov to Feb), otherwise I get seasonal affective disorder (SAD) symptoms (winter depression). It works well.

Light boxes typically come with natural daylight bulbs that mimic the cold and bluish color temperature of natural daylight. But I find these natural daylight bulbs too harsh at night, so I use ordinary warm light bulbs, which I find work fine.

It's not so much the quality of light, but the quantity of light that is important for treating SAD.

To be effective at treating SAD, a light box has to be able to create a light level of around 2,500 to 10,000 lux, when the light level is measured at your eye position.

You have to place the light box close to your eyes: typically you want your eyes at distance of around 50 cm or less from the box (the further you are away from the box, the more the light level will drop, which means you lose the positive effect).

Some people erroneously place their light box a meter or more away from their eyes, but that won't do much.

I place my light box just to the side or underneath the computer screen, so that the light starts working on me as I use my computer.

You might also consider buying a cheap lux meter to measure light levels, which you can find on eBay for around $20. It's handy to have a meter, because you can then double check that the light level at eye position is around 10,000 lux. As mentioned, if you move you head further away from the light box, lux levels entering your eyes will fall, so it is important be quite close to the light box.

At 10,000 lux, just 30 minutes exposure to the light a day is normally enough to keep SAD at bay.

If you place the light box further away from your eyes, so that the lux level drops, then you will need to give yourself a longer exposure time to get the same effect.

So 10000 lux requires 30 min, 5000 lux requires 1 hour, 2500 lux requires 2 hours, etc.

By comparison: outside on a bright sunny day, you get exposed to around 50,000 lux.




Note that this light from the light box has to get into your eyes to work. This is not a vitamin D issue, where you need light on your skin to make the vit D. There are light receptors in the eye that respond to increased light levels, and SAD will usually disappear when you get a bright enough light in your eyes on a regular daily basis.

Low light levels of winter have also been shown to reduce brain blood flow in patients with SAD, so conceivably this might lead to worsened ME/CFS symptoms.
 
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Yes, I use a light box placed under my computer throughout the darkest months of winter (Nov to Feb), otherwise I get seasonal affective disorder (SAD) symptoms (winter depression). It works well.

Light boxes typically come with natural daylight bulbs that mimic the cold and bluish color temperature of natural daylight. But I find these natural daylight bulbs too harsh at night, so I use ordinary warm light bulbs, which I find work fine.

It's not so much the quality of light, but the quantity of light that is important for treating SAD.

To be effective at treating SAD, a light box has to be able to create a light level of around 2,500 to 10,000 lux, when the light level is measured at your eye position.

You have to place the light box close to your eyes: typically you want your eyes at distance of around 50 cm or less from the box (the further you are away from the box, the more the light level will drop, which means you lose the positive effect).

Some people erroneously place their light box a meter or more away from their eyes, but that won't do much.

I place my light box just to the side or underneath the computer screen, so that the light starts working on me as I use my computer.

You might also consider buying a cheap lux meter to measure light levels, which you can find on eBay for around $20. It's handy to have a meter, because you can then double check that the light level at eye position is around 10,000 lux. As mentioned, if you move you head further away from the light box, lux levels entering your eyes will fall, so it is important be quite close to the light box.

At 10,000 lux, just 30 minutes exposure to the light a day is normally enough to keep SAD at bay.

If you place the light box further away from your eyes, so that the lux level drops, then you will need to give yourself a longer exposure time to get the same effect.

So 10000 lux requires 30 min, 5000 lux requires 1 hour, 2500 lux requires 2 hours, etc.

By comparison: outside on a bright sunny day, you get exposed to around 50,000 lux.




Note that this light from the light box has to get into your eyes to work. This is not a vitamin D issue, where you need light on your skin to make the vit D. There are light receptors in the eye that respond to increased light levels, and SAD will usually disappear when you get a bright enough light in your eyes on a regular daily basis.

Low light levels of winter have also been shown to reduce brain blood flow in patients with SAD, so conceivably this might lead to worsened ME/CFS symptoms.
Hip,

Very interesting, most informative. Thanks for this post!
 
Summer and I are just not good friends... Apart from hayfever, sunburn, sun/heat rashes and headaches from the bright light, I really don't like heat.

Usually Dutch summers are between 20C/68F and 25C/77F, with a lot of cooler cloudy and rainy days. This year however was sunny and dry, with temperatures up to 35C/95F for weeks on end. My heat tolerance dropped to 21C/70F. Summers for me are a constant battle preventing heat stroke. We've put white gravel on our flat roof, to keep it somewhat cooler. I've put up double curtains: white on the outside to warmth out, and dark blue on the inside to keep the place dark. A doggy pool with cold water - straight from the tap - on our porch in the shade, so I can take cold baths when needed. And I have a number of gel packs in the fridge to keep my neck and head cool.

When I do get too warm, I get lethargic with a headache, get severely confused and incoherent, get nauseous, and I don't want to drink anymore. I just want to give up, curl up under a cozy blanket and sink into the deep unknown.
My credo now is "cold and salt" (in Dutch "koud en zout" rhymes). When I get too warm, I really need to cool down, and eat something very salty (crisps, salami, cheese). It really brings me back to life, within seconds!


Now autumn has finally set in, I can finally do things. Go out shopping, go out for dinner, meet with friends, do some sports, take a long walk. I can finally relax. Until spring turns into summer again...
 
Summer and I are just not good friends... Apart from hayfever, sunburn, sun/heat rashes and headaches from the bright light, I really don't like heat.

Usually Dutch summers are between 20C/68F and 25C/77F, with a lot of cooler cloudy and rainy days. This year however was sunny and dry, with temperatures up to 35C/95F for weeks on end. My heat tolerance dropped to 21C/70F. Summers for me are a constant battle preventing heat stroke. We've put white gravel on our flat roof, to keep it somewhat cooler. I've put up double curtains: white on the outside to warmth out, and dark blue on the inside to keep the place dark. A doggy pool with cold water - straight from the tap - on our porch in the shade, so I can take cold baths when needed. And I have a number of gel packs in the fridge to keep my neck and head cool.

When I do get too warm, I get lethargic with a headache, get severely confused and incoherent, get nauseous, and I don't want to drink anymore. I just want to give up, curl up under a cozy blanket and sink into the deep unknown.
My credo now is "cold and salt" (in Dutch "koud en zout" rhymes). When I get too warm, I really need to cool down, and eat something very salty (crisps, salami, cheese). It really brings me back to life, within seconds!


Now autumn has finally set in, I can finally do things. Go out shopping, go out for dinner, meet with friends, do some sports, take a long walk. I can finally relax. Until spring turns into summer again...
Bettie77, summer sounds like a misery for you. You've got some good methods of easing the difficulty, very creative. But it sounds like the change of season is what brings the greatest success and relief. Very much like my son Jesse.
 
From what I understand, magnesium is used in the activation of vitamin D. So if you're taking vitamin D (especially very high doses), you might want to consider taking/increasing supplemental magnesium.
That is what I am doing.
 
I tend to always relapse in Feb. Two years before I really got ill, I had bloodwork in Feb because I knew something was off (I was still a runner then, 2011). Last year I was newly on Famvir and had a smaller relapse. This year I will be 1.3 years into Famvir treatment in Feb and hoping for less of a relapse yet.

I do not know what it is about Feb. I feel better in late summer and fall.
 
From what I understand, magnesium is used in the activation of vitamin D. So if you're taking vitamin D (especially very high doses), you might want to consider taking/increasing supplemental magnesium.

http://jaoa.org/article.aspx?articleid=2673882
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4717874/
https://articles.mercola.com/sites/...3/12/magnesium-vitamin-d-supplementation.aspx
Yep bjl218, I am doing that:) Something else to look into apparently is vit. K2 and especially K3 because they all work together.