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

Discussion in 'Phoenix Rising Articles' started by Jody, Oct 26, 2018.

  1. Jody

    Jody Senior Member

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    Jody submitted a new blog post:

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

    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?

    [​IMG]

    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
    Continue reading the Original Blog Post
     
    Last edited: Oct 27, 2018
  2. Moof

    Moof Senior Member

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    I'm the opposite way round. Heat makes me really ill, with an obvious immune response (very swollen glands, sore throat, etc). The arrival of autumn is always hugely welcome! :)
     
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  3. Jody

    Jody Senior Member

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    Moof, you sound just like my son Jesse. He is the same way:)
     
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  4. Raven Mom

    Raven Mom

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    yes, me too! the subtlest of shifts towards 'coldness' is like a torrent. I have to create 'micro-climates' and very intentionally spend time in a room I've had a small space-heater on for at least 15 min rather than the summer pleasure of 'breezing' from room to room on days with available energy to do so. I've found it too draining to put a sweater on and off with frequency so have woolen shawls and small throw-blankets at the ready everywhere since it's easier to wrap than manipulate arm joints/shoulders/back muscles into sweaters.

    as to strategizing around sudden light deficiency, I find it helps to think of it like conservation of energy but with a feeling of rich sensory amplitude (not risking overload-- too much is at least as detrimental as too little, of course, just a plentitude)-- for example increasing beneficial, soothing smells and colours and sounds to create a cushioning effect around the loss of light. so, on the greyest days, wear the brightest colours; as fresh fruit becomes less available, put the frozen fruit in the prettiest complimentary coloured china bowl you've got....essential oil in a bath most days whereas in spring, there could be lilacs through an open window. but treating the loss as legitimate and something to supplement is key. not sure if I'm lucky that I can supplement with increase of sensory comfort in other senses or if this might prove handy to others.

    thanks for this post @Jody, it's a very ~*timely~* reminder to take some extra t.l.c. with choices in the next while.
     
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  5. Jody

    Jody Senior Member

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    Thanks for this Raven Mom. Some helpful ideas, some that I knew of but didn't mention, and some that I have not thought of myself:)

    I have made a practice of the 15 min. preheating with a little heater in my bedroom before I get dressed, if I am in there reading during the day and before going to bed at night. Makes all the difference.

    I usually am able to do the on-off sweater thing most days but I am also prone to having weeks on end where I am unable. And yes, shawls and throws are great. I use them too:)

    I have not thought about increasing visuals and smells in this light but I do look forward to Christmas decorating in my house, and especially enjoy dark greens, burgundies and gold combinations. I drink them in with my eyes and breathe deep. I see from your post there may be a number of things I can do to compensate for lack of sunlight.

    There's an article on Phoenix Rising that I wrote about Beauty being a joy forever and small ways in which I had tried to instill more beauty in my life and my home. I am reminded of that article by your post:)

    I found it! https://phoenixrising.me/archives/21871
     
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  6. Wolfcub

    Wolfcub Senior Member

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    Well, my illness started with the first beautiful breath of Spring. I was more steady and even had some remissions in the summer (in a long harsh heatwave which should have wiped me out!) And now it's Autumn, I'm definitely having exacerbation of symptoms again.
    I hadn't linked it with seasonal changes @Jody so am finding this very interesting.

    I remember many years ago when I was fit and well, I often got a few days feeling "grungy" in both Spring and Autumn. It was always a mystery to me and happened even though I was well otherwise and had no infections (colds etc) But sometimes it would almost feel like I was sickening for a cold -or similar -and hang around for maybe a week.
     
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  7. Jody

    Jody Senior Member

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    Wolfcub,

    Back in the fall of 2007 I was dreading the deepening of autumn because I'd had my first "drop" in early September and could only hope that a completely crash would not happen ... and I read an article that got my attention. It was by Dr. Mercola, who I thought of as being out there on the fringe medically ... but I must credit this guy with a couple of things that turned my health around, when nobody else was seeing what he was seeing.

    One of those major deals was vitamin D3.

    I asked my naturopath about this supplement. She didn't know anything about it but didn't see any reason that I couldn't try it out. So I bought some tablets, and over a short time I became more ... stable. Less weak. Less of a feeling that I might fall down. Less vibrating. Less air hunger. Less brain fog. Less anxiety.

    And as I looked at this improvement and looked over my past history I was astonished to see the pattern -- guardedly better in early May, almost normal (sortof) through the summer and the more time I spent in the sun the better. As the days began to shorten and we got into late August, no matter the weather, I would start to weaken again. By December I'd been so sun deprived that I would have a big ol' crash, and would spend most of my time in bed feeling sick and mentally baft for the next several months. When the days were getting longer and warmer and I was back outside.

    I thought, Why did I not see this before? And it was years before the mainstream got on board about vitamin D. But I made the change in the fall of 2007 and while I still dip substantially in the all I have never had an all-systems crash since then.

    And even before I got sick, back when I was a kid back to grade school, I remember noticing that a huge shift would happen to me every fall. I attributed it to going back to school after the freedom of summer vacation back then. I've realized in recent years that I have SAD and probably always have had. Of course it's gotten more extreme since I got ill.

    I take 10,000 IU every day. If for some reason I can't -- if I have run out and am broke -- after two weeks or so I begin to feel the symptoms weaseling their way back in again. Within 2 days of taking them again the symptoms recede.
     
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  8. Wolfcub

    Wolfcub Senior Member

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    I have been taking a vit D3 for months. My problem was I didn't know if it might make me worse....or what so I started low 400IU (apart from the vitD3 I also get in food)
    Now...I haven't "upped" it. 400IU was way more than I've ever taken as a supplement before, so I may have been a bit too scared of taking a really very high dose. But it might be worth trying that.
     
  9. Jody

    Jody Senior Member

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    As my naturopath cautions me to say -- I'm not a health professional and I am not giving out medical advice, just passing on what I have experienced. With that disclaimer taken care of:) you might want to do some reading on it. A google search will give you more than one perspective -- some will tell you your dose is fine and for all I know maybe it is.

    But you'll also come across some who say that especially those who don't live near the equator, who have serious winter and little sun for half the year are probably vit. D deficient. And don't forget the angle of the sun part of the year doesn't give us much. With most of us being as deficient as we probably are ... my thinking was that there wasn't much risk of me getting too much D:) For me 5 thousand didn't do much. Upped it to 8 thousand which was better and I stayed there a long time. Then got spunky and decided to see if it could be better. Found that the difference between 8 and 10 thousand for me was huge. And I've stayed with it year round, whether out in the sun or not.

    So read up. Take everything with a grain of salt.
     
  10. Howard

    Howard Senior Member

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    Thanks for the article.

    I've been utilizing a UVB light on a daily basis for the past three years. My vitamin D started at 19 and now sits at 31.

    Oral vitamin D3, especially the prescribed 50,000 IU dosage caused a negative reaction, that's why I chose this route. Even the 400 IU made me feel uncomfortable.

    I've read that there are potential reasons for this, but I've shied away from all supplements and vitamins for some time (money issues, bad reactions).

    I wouldn't recommend the particular brand I purchased, although the light does what it's supposed to do.

    Example: The automatic timer broke the second time I used the product, the light bulb has to be manually adjusted each and every time just so the darn thing turns on, and the encasing is badly warped.

    For $300 I expected a little bit more, but I can't complain about the end result. I have not noticed a profound increase in energy, but as I mentioned, my levels did increase overall.

    Please note that I am bed-bound and haven't been outdoors in several years, so I don't make a great barometer.

    H
     
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  11. Tammy

    Tammy Senior Member

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    50,000 IU of D3? Usually the dose on bottle is 5,000 IU. Are you sure your not talking about D2?
     
  12. Howard

    Howard Senior Member

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    It may have been 50000 IU of D2 ... was prescribed nearly four years ago.
    Every attempt since has been me utilizing D3.
     
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  13. Wolfcub

    Wolfcub Senior Member

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    That's a wise and careful approach, @Jody You have found something that helps you very much -so I'd say stick with it.
    I have no idea how much vit D3 I usually get from sun, but I spend a lot of time outside in summertime and don't use sunscreen (except on those boiling days when I have to be in direct sun for a long time.) But I bet it is a lot more than 400IU at a guess. So the only reason I was being a bit wary is I have found I respond to things I take orally nowadays in an unpredictable and sometimes paradoxical way. That's weird for me. Everything is topsy-turvy compared to the way it used to be.
    @Howard 's idea of the sun lamp is probably a better idea for me, but I haven't got one yet.

    However I haven't noticed any negative reactions with the 400IU so far, so I might experiment with doubling it and so on, and see what happens....

    I always imagined D3 is stored in the liver, and always wondered if overdoing it (orally) was okay or not. I read conflicting opinions about it.

    Oh and yes...days are getting much shorter here, even though lots of sun at the moment but the angle of the sun is low, and it is too cold to strip off clothes! So that must be almost zero vit D3 from sun right now except what gets on my face.
     
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  14. oniman7

    oniman7

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    I have to say that I don't know for sure yet that I have CFS and I definitely don't feel I have ME (although it's prominent in my immediate family). But, the change of seasons has wreaked havoc on me my whole adult life. I really have to say I have massive admiration and sympathy for people who are affected so strongly by this as for it to be debilitating.

    I do deal with MDD and GAD, and the change of seasons has always messed with me really badly. My birthday is in late August (which I never really liked either), followed shortly after by the equinox, shortening of days, and cold weather.

    Once it hits, I'm prone to sleep forever (12-15 hours a day are not unusual), headaches, brain fog, low energy, depersonalization, confusion, low libido, sadness... you name it! Also, I become completely ravenous for comfort foods involving lots of sugar and also tons of caffeine.

    It was worst when I lived in South Carolina and the coming of winter meant dreary, gray days that threatened the approach of winter. Now living in sunny South Florida, I am just beginning to deal with the temperature dropping (all the way to 70 degrees) but the short daylight hours have been messing with me for some time - especially as a night shift worker.
     
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  15. Raven Mom

    Raven Mom

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    thank you so much~*~* :tulip::tulip::tulip:
     
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  16. jesse's mom

    jesse's mom Senior Member

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    I have been very ill since 2011. Bedridden for just over a year. I live in a hot climate with mild winters and they still cause me severe pain. I am most active and comfortable in the fall and spring. Low pressure systems that roll through, and intense thunderstorms cause me to have intense pain. I am really only comfortable in 74F temperatures. My inflammation is worse when I get hot. I began to get a bad sunburn in the shade reading at the beach in April!

    I have always done better falling back rather than springing forward! I have a child I had late in life, A high school child who, despite having mono in 5th grade is super active. Thank goodness!

    I got a new GP she did several types of blood work and prescribed D3 50,000 and blood pressure dropped so badly I was passing out during conversations. I knew it would help me so in the last 6 weeks I slowly increased my D3 with childrens drops and am up to 1000 without my blood pressure dropping too severely. I do think this is helping me.

    The holiday season has been a bad time for me for years, I get blue from the fact that I am not cooking, shopping, decorating. The best I can do is watch classic holiday films with my family. On a good day.

    Right now acceptance is the key. Causing myself to be miserable because of things I am not able to do is the root of sadness for me. And sadness causes me to freeze!

    @Jody , I really enjoy how you write. You seem upbeat and educated on our illness, while very down to earth.
     
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  17. Jody

    Jody Senior Member

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    Howard,

    Sorry to hear you had bad experience with your vit. D. If you were taking D2, it apparently is not as good as D3, not as easily assimilated or something. But it sounds like you're having some results with your light.

    Yeah, you should be able to expect more for $300:) but if it's bringing an increase in energy that is very cool.
     
  18. Jody

    Jody Senior Member

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    There is plenty of contradictory stuff out there on Vit. D and has been for years. I have read for instance that when 400 IU became the standard for vit. D the goal then was to simply prevent rickets which was a big thing at that time.

    From what I've read, especially through the winter when we're not getting the sun, I think we'd be hard pressed to get too much Vit. D, it is fairly widely agreed that the further we are from the equator, and especially in our colder months, it's common for people to be deficient in D.

    I understand your caution though about adding supplements. I also have huge ridiculous reactions to many kinds of medication and supplements. I generally have to start anything with a fraction of what is considered a normal dose. Alot of things I can't take at all. Gradual change is often best.
     
  19. Jody

    Jody Senior Member

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    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?
     
  20. Jody

    Jody Senior Member

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    jesse's mom,

    Thank you for your kind words about my writing. People who are ill with this disease are close to my heart and I do my best:)

    I can relate to quite a bit of what you've described. It's been a few years thank goodness but about 10 years ago I was thrown around like a rag doll by the passing through of low and high pressure systems. We had a lot of changeable weather that summer and I was very much affected by it. Got so that we could tell what the weather was doing outside and whether the low pressure had just been replaced by high pressure and vice versa, by how my symptoms would move in and out, sometimes changing drastically repeatedly through a couple of hours.

    I'd get vertigo, brain fog, anxiety, joint and muscle pain ... that would ease as the new pressure system moved in. Fortunately for me, this situation only lasted a couple of years for me, though I am still affected a bit by extreme weather pressure systems. For what it's worth, even these extreme terrible scenarios can change. I can't tell you that it will change for you. But I do know it's possible.

    It's reassuring to have a healthy child isn't it:) I have five kids. The youngest also has ME/CFS but thank goodness the other 4 are healthy.

    Your vit. D/ blood pressure deal sounds puzzling to me ... but I am no doctor and most of this stuff is beyond me:) It sounds like you are keeping yourself very aware and on top of things though.

    I sympathize about the frustrations and heart ache that come with the holiday season. I spent many years unable to take part in much, and felt guilt over that, loneliness, and a fear that things would always be this way. Went on for a few years like that. Things have improved for me, I have regained quite a bit of my health and done a pretty decent balancing act for the past half a dozen or so years. Holiday season is one of the times of year when I am at risk for having a crash either just before Christmas or right after.

    You are so right about the importance of acceptance. It's hard to do. But it will help with your ability to recuperate. Rest is your friend. Your bed is your friend. I know it doesn't seem that way. But the more you can stop yourself from rebelling and resisting these "friends" the better it will be for you. And the better your chances of regaining more of your life.
     
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