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How Do You Handle the Summer?

by Jody Smith

pixabay-sunFor most years in the last two decades, summer has been my best season. My serious crashes always took place between September and April. And every year, beginning in May, I would begin my slow climb back toward something resembling health.

Laying outside in the sun for 20 minutes or so in the mornings seemed to make a difference surprisingly quickly. Being able to go for walks, being out in the summer weather, increased my mood and seemed to be one of the factors decreasing my ME/CFS symptoms.
 
By mid-summer I usually had advanced to being a dull/normal. Not bursting with energy, but I was no longer a staggering, shaking vegetable either. By the end of the summer I would usually be able to go for half hour walks and enjoy basic activities every day. My cognitive abilities also improved during these months.

By the end of the summer I would be telling myself that it seemed like I was getting better. Nobody was more shocked than I when every September I would find my energy diminished, my mental faculties shutting down and my physical stamina trampled by parasthesia and muscle weakness once more.

Vitamin D

I cannot prove that my discovery of vitamin D in the fall of 2007 prevented the major crashes that first winter, and most winters thereafter. It is the only thing that changed though and I am convinced that vitamin D has been a superhero in my life.

I take a lot of it, 10,000 IUs a day, year round. This is not to say that you should be doing this, everyone’s vitamin D needs are unique to them. I tried taking less at a time and found that the fewer tablets I took, the more my ME/CFS symptoms would re-emerge.
 
All this makes me think that my summer resurgences were and are linked with my own personal tendency to be vitamin D deficient. Do I know this for sure? No, I don’t. But I like feeling better, and I prefer that this not be limited to a few months in the summer.

Photophobia

But summer is not a panacea for everyone with ME/CFS. And in fact, there were a few summers when I couldn’t handle being in the full-bore sunlight. I learned later this could be called photophobia, which is not a fear of anything, rather it is a physical intolerance for bright or even moderate light. If I was outside for more than a few minutes, I would experience an amazing visual grab bag of symptoms.
 
What I was seeing was washed with a white light, rendering my vision blurry. I’d see quick little light zaps, and floaters of light in my line of vision. It was hard to track or focus my eyes on anything. This situation would often trigger renewed vertigo, and left me with a cognitive lag, as my brain tried to process what I was trying to see.

The only remedy was to get into a darker location, and not try to do anything till the phenomenon would pass. Sometimes it would correct itself within 20 minutes, other times the after-effects stayed with me through much of the day. Those summers, I avoided being outside very long.

Jesse

My son Jesse, 23, has been sick for seven years. He spent the first of those years in a darkened room, away from the light. When I persuaded him to try my method of lying in the sun, it made him worse. He would feel sick and light-headed afterward, and his vision was negatively affected. So that was a lesson for me.
 
He has gradually been improving the last couple of years, and is now able to spend some time in the sunshine. But he would never willingly spend a day outside in the sun because too much of it is still a bad thing for him. The heat makes him feel unwell, rather than revitalized as it does for me.

He prefers to be cold, while my muscles start to ache when the temperatures are too cool. I need temperatures to be in the low 70s, so no keeping the thermostat turned down in the winter to save money for me. He lives in this warm environment by keeping his window open a good deal of the winter, and a fan on in his room when it’s too cold out for open windows.
 
Some of us embrace the return of the sun each summer. Some of us dread its effects.
 
What is summer like for you?

Further Reading 

Visual Symptoms
http://www.neurosymptoms.org/#/visual-symptoms/4539525685
 
Visual Dysfunction in Chronic Fatigue Syndrome
http://www.cfids.org/archives/2001rr/2001-rr3-article02.asp
 
When Chronic Fatigue Syndrome Harms Vision
http://www.everydayhealth.com/chronic-fatigue-syndrome/vision-problems.aspx

 

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{ 58 comments… add one }

  • valentinelynx July 15, 2013, 6:35 am

    Used to love heat. Especially hot nights. But now heat kills me. And for the past 4 years we've been living in Arizona! Before that, we lived at 7,000 feet near Park City, UT, where it snowed 10 months out of the year, and I loved it! Turns out that when the mercury drops, it makes me want to be more active. A couple winters ago we had a hard freeze (15 deg F) here in Tucson, and I really wanted to go out and walk (and did and enjoyed it). In the summer, it rarely drops much below 90 even at night, and walks, which I occasionally take at night, just don't feel good.

    I also don't tolerate sun well. I tend to get a rash instead of burning, and my eyes squint and run. No, Arizona is not the best place for me!

  • Rrrr July 19, 2013, 4:23 pm

    Recommended: cooling vests for ME/CFS patients

    We are having a heatwave on the east coast of the USA. And we don't have air conditioning! So I want to recommend something for those who can't tolerate the heat, like me. I just bought this "cooling vest" and love it. It really works. It comes with ice packs that you freeze and then slip into these pockets all over the vest. Cost $119. Well worth it.
    http://www.polarproducts.com/polarshop/pc/Kool-Max®-Cooling-c14.htm

    (I have no financial interest in this product, I just found that it works for me and thought others might like it, too.)

  • Rrrr July 19, 2013, 4:34 pm

    oh, i see sushi already recommended cooling vests on page 1 of this thread (she is always 10 steps ahead of me!!!). duh. anyway, the one i bought (see above link) is a bit cheaper than some others i found, and seems to be working well. i'm wearing it as i type this. and it is a sweltering 92 degrees already here, and it is still morning! yikes. expected to get up to 100 today. very very rare for here.

  • Rrrr July 19, 2013, 5:27 pm

    A FRIEND JUST SENT ME THIS ADDITIONAL NOTE:

    Hi, I don't know if you get the xxx newsletters, but xxx was promoting a neckscarf variant of this. I did some research and got this one at Amazon for $10.10:
    http://www.amazon.com/gp/product/B001B5I57I/ref=oh_details_o01_s00_i00?ie=UTF8&psc=1

    It's terrific! Yesterday I wore it to get to and from xxxxx, and it really made a difference! You just wet it and it holds a ton of moisture without dripping and stays damp and cool for a couple hours.

    The people who made your vest also make a neckscarf with cooling packs for $27.95:
    http://www.amazon.com/gp/product/B001B5I57I/ref=oh_details_o01_s00_i00?ie=UTF8&psc=1

    These might be good options to let people know about. The vest is insanely out of my price range, and I suspect that applies to many others as well.

    Oh, and it's also recommended for OI patients.

  • Little Bluestem July 20, 2013, 8:48 am

    My best seasons are spring and fall. Winter is generally worse than summer. When it is really hot, I say indoors as much as I can. I have a special 'skimpy' wardrobe that I wear only in my apartment. I use the refreezable ice packs for sprains and such to help keep me cool.

    I have two air conditioner that are not meant for as many square feet as my apartment is. They keep it liveable most of the the time. Right now is not that time. We have had hot weather for the past 4 days. I don't cook. I eat cold food, use the microwave and toaster, and get food out. My computer room is small. If I turn the air conditioner toward it, I am comfortable here.

    Yesterday afternoon is was 90F in my living room and bedroom and 92F in my kitchen. Last night I put my (seldom used) exercise mat down in front of an air conditioner. I folded a couple of blankets on top of it, then added a sheet. It was still sort of hard, so I got a body pillow I do not like to use on the bed and found l liked it on my pallet. I slept there last night and will again tonight. The heat is supposed to break tomorrow, but it may take my solid brick building a few days to cool down.

  • MeSci July 20, 2013, 9:21 am
    Little Bluestem

    My best seasons are spring and fall. Winter is generally worse than summer. When it is really hot, I say indoors as much as I can. I have a special 'skimpy' wardrobe that I wear only in my apartment. I use the refreezable ice packs for sprains and such to help keep me cool.

    I have two air conditioner that are not meant for as many square feet as my apartment is. They keep it liveable most of the the time. Right now is not that time. We have had hot weather for the past 4 days. I don't cook. I eat cold food, use the microwave and toaster, and get food out. My computer room is small. If I turn the air conditioner toward it, I am comfortable here.

    Yesterday afternoon is was 90F in my living room and bedroom and 92F in my kitchen. Last night I put my (seldom used) exercise mat down in front of an air conditioner. I folded a couple of blankets on top of it, then added a sheet. It was still sort of hard, so I got a body pillow I do not like to use on the bed and found l liked it on my pallet. I slept there last night and will again tonight. The heat is supposed to break tomorrow, but it may take my solid brick building a few days to cool down.

    I'm sleeping in my (unfinished) conservatory for the first part of the night at the moment, as it's too hot upstairs until the early morning. It also saves having to drag myself upstairs when I'm feeling tired and weak. I'm usually feeling stronger after lying down for a few hours.

  • GracieJ July 21, 2013, 3:29 pm
    MeSci

    Despite my venerable age, I lost my 'extra baggage' with ease and improved many symptoms dramatically with my gluten-free, low-sugar/low-grain diet.

    I wish my "extra baggage" would drop off on any diet. Just doesn't happen.

  • MeSci July 21, 2013, 7:18 pm
    GracieJ

    I wish my "extra baggage" would drop off on any diet. Just doesn't happen.

    Have you tried palaeo or low-carb or leaky-gut and/or gluten-free? They seem to work for a lot of people.