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How Do You Handle the Summer?

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by Jody Smith


For 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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I had SAD, too, for a while. High dose vitamin D helped me a lot -- liquid under the tongue, not pills. I still take it because I don't get sun on my skin these days.


SOC.

I don't know where I'd be without vitamin D supplements. Well, I do have a fair idea where I'd be. On my face, 9 months of the year.
 
Hot humid weather is the worst for me. Which makes living in the monsoon tropics a problem. Hence air conditioning for about 6 months of the year.

Cool-warm, dry-ish weather is best for me.

I get SAD during the long overcast monsoon spells during the rainy season. Going to try light therapy next season, I think.
 
Misfit Toy

I have struggled with SAD too, big time. Hate being shut up indoors all the time.

Even in my severe years I would feebly go for walks outside, it helped to have someone walk with me. It made me feel more secure, as so dizzy and out of balance. I appreciate flowers a lot more now, they do cheer. x
 
SAD is a hard one. The lamp didn't work for me. It has to be sun. In your face, sun. The light for SAD actually hurt my eyes and I felt anxious. It's not the same. I am on 5,000 IU of Vitamin D. Perhaps I need to go to 10,000. I know my doc keeps saying how low it is. Again, hormones and the beginning of the change. ; /
 
Hot humid weather is the worst for me. Which makes living in the monsoon tropics a problem. Hence air conditioning for about 6 months of the year.

Cool-warm, dry-ish weather is best for me.

I get SAD during the long overcast monsoon spells during the rainy season. Going to try light therapy next season, I think.


Sean,

I can't imagine what it would be like handling tropical weather with this thing.

I have read about light therapy, and apparently some people have good results from it. Good luck!
 
SAD is a hard one. The lamp didn't work for me. It has to be sun. In your face, sun. The light for SAD actually hurt my eyes and I felt anxious. It's not the same. I am on 5,000 IU of Vitamin D. Perhaps I need to go to 10,000. I know my doc keeps saying how low it is. Again, hormones and the beginning of the change. ; /


Misfit Toy,

I started out on 5,000 IUs and found that it helped somewhat. I increased by 1,000 IUs at a time, and for me, 8,000 IUs helped alot. But 10,000 made the biggest difference. If your doctor is telling you it's low, then an increase might make a real difference.
 
I've just been wondering Jody... it is good to find out what life is like from different perspectives though.
I've always believed strongly in cross-cultural research - the only way to exclude a cultural bias from a biological investigation. :lol:
 
I've just been wondering Jody... it is good to find out what life is like from different perspectives though.
I've always believed strongly in cross-cultural research - the only way to exclude a cultural bias from a biological investigation. :lol:



Peggy-Sue,

You've found a good place to do that, here. In this thread alone, we've got people in the tropics, in Arizona and New Mexico, in southwestern Ontario, and New Zealand (their weather is VERY different during our summer) just looking at people's avators in the thread. None of them are indicating a climate I'd like to live in. Give me gentle temps without humidity anytime.

My mother-in-law was from Scotland, I've always been fascinated with the place. Not sure I could hack the weather though.
 
This is the most cross-cultural forum I'm on Jody.
(but I do have very limited "existence" in a microscopicically small section of the internet).

(shoving my research-y hat on again)
One has to remember that some things do co-evolve, they still cannot be considered to be proven biological on the basis of being in all cultures.
There's been an interesting historical programme on here, about all the culture "bequeathed to humanity" by the ancient Greeks. The narrator seems to think they, and they alone are responsible for theatre. The Chinese invented theatre too.


Jody, it's not the weather you need to worry about here. It's the midges. Thankfully, mostly on the other side from me!
ps. Did you know that Canada and Scotland belong to the same original land mass?
 
I'm a bit concerned about one of the links given in the initial article - neurosymptoms.org. This is a psychoquackery site that I referred to in another recent posting.

Re summer, it makes me feel better as long as it isn't too hot. I bought a UVB lamp last year for winter use, as there is evidence that we absorb nutrients poorly from the gut, but I suspect that it wasn't enough to combat the lack of real sunshine. I don't know whether feeling worse in the winter is due to lack of Vitamin D for me - maybe. I don't get actual SAD, just don't feel as good physically. I wouldn't be surprised if sunshine gives us some as-yet-undiscovered benefits as well as Vitamin D. I certainly find that it lifts my mood, which isn't too bad generally but a bit better is welcome!

Hot weather saps my strength, makes me sweat buckets and my legs go weak and heavy.
 
I get everything in your last statement too, MeSci. Yuk, isn't it?

You need to remember that it takes a whole load of effort for our bodies just to keep going and maintain homeostasis, including our body temperature. (we are known to have trouble with temperature regulation).

(80% of the calories consumed by a fit and well person who is of consistent "normal" weight goes to keep the body going - they only use 20% on daily activities, including keeping fit.)

So for us, extremes of temperature put a huge strain on our basic functioning.

Temperature seems to be the only area in life where I am actually fond of being temperate....:rolleyes:
 
This is the most cross-cultural forum I'm on Jody.
(but I do have very limited "existence" in a microscopicically small section of the internet).

(shoving my research-y hat on again)
One has to remember that some things do co-evolve, they still cannot be considered to be proven biological on the basis of being in all cultures.
There's been an interesting historical programme on here, about all the culture "bequeathed to humanity" by the ancient Greeks. The narrator seems to think they, and they alone are responsible for theatre. The Chinese invented theatre too.


Jody, it's not the weather you need to worry about here. It's the midges. Thankfully, mostly on the other side from me!
ps. Did you know that Canada and Scotland belong to the same original land mass?


Peggy-Sue,

Midges! I have heard of them. They sound awful.

I didn't know that about the original land mass. I just know you're alot further north than where I am in Ontario.
 
How are those of you coping with the heat in America ? I heard on the news about 3/4 nights ago about the terrible fires I think it was Nevada ? I don't know how you cope with those extreme temperatures.

The closest I have experienced is 45 degrees C. And that was about 35 years ago on my OE (overseas experience) in Australia. I was so hot, my feet were burning, skin felt like it was burning. I couldn't get off to sleep and had to go and wrap wet towels around me. But I can't believe I had to go to those measures. Wet towels !!! In bed !!
 
I also feel a lot better in the summer, when I get a tan. But since vitamin D didn't help me, I wondered if it could be something else. I think it could be immune system regulation through Photoimmunology: http://followmeindenmark.blogspot.dk/2012/11/photoimmunology.html
 
For me the Heat of summer makes my symptoms intensify. Living in the South eastern US I used to love the summer used to love the heat. Folks used to ask how I could stand it being so hot with no air condition and often no fans turned on. I miss things being like that. Not to mention my power bill being a lot less.
 
Summer used to be my enemy, for many years. I just wilted with the heat. Air conditioning meant more symptoms, probably with the boost in mold, unknown to me. Swimming pools meant chlorine, which wore me out, so forget swimming. I absolutely dreaded the end of May here in Utah, knowing I would not feel too good until about October. On the flip side, my winters were just as hard. If I got cold, I stayed cold... took hours to stop shivering. I often became ill around Thanksgiving or Christmas and stayed ill with colds/bronchitis then migraines, sometimes well into July...

It's a miracle we survive for years like this!

Happy to report -- a full summer last summer of NO HEAT INTOLERANCE whatsoever, and this year is looking the same. Love it!