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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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Funny. I love being outdoors and would go for a run in any temp up to 100F prior to being sick. Afterwards, I get knocked out after being in even moderate heat. I've gone out many times either through neccessity or with a plan of "I'll just dive into an air conditioned space within 20 minutes, that'll be fine, right?", then being un or semi conscious the next day.
I'd love to be outside more, but I have to consider the consequences.
 
Funny. I love being outdoors and would go for a run in any temp up to 100F prior to being sick. Afterwards, I get knocked out after being in even moderate heat. I've gone out many times either through neccessity or with a plan of "I'll just dive into an air conditioned space within 20 minutes, that'll be fine, right?", then being un or semi conscious the next day.
I'd love to be outside more, but I have to consider the consequences.

My experience is similar, although I also get a rash from any sun exposure. I'd love to be out in the summer, but the consequences aren't worth it. I tend to dive from one air-conditioned space to another.

Now that I'm feeling a lot better, I'm experimenting with the heat and sun to see if I'm less sensitive now. My short experiments with being out in the heat suggest that that symptom is less severe. I haven't tried exposing my skin to the sun yet. Now that I finally don't have red pinpoint specks all over my arms, I'm not eager to risk a rash right away. Maybe next month. ;)
 
I can go out on overcast days that aren't too humid but the last 5yrs, I'm always better after 7pm in the summer. Even though I love the outdoors and love living on porch and patio, the summer months zap me of any energy. I usually ride the bike with dog or walk right before dusk. I actually feel faint in heat and lie on wicker swing or loveseat with my feet up. It's the most normal acting thing I do. People go past and say "that's the life", I laugh and think if you only knew. Most of the time I'm sorry to say I'm in A/C and it getting worse every year.
 
Funny. I love being outdoors and would go for a run in any temp up to 100F prior to being sick. Afterwards, I get knocked out after being in even moderate heat. I've gone out many times either through neccessity or with a plan of "I'll just dive into an air conditioned space within 20 minutes, that'll be fine, right?", then being un or semi conscious the next day.
I'd love to be outside more, but I have to consider the consequences.


HowToEscape,

I feel your pain. Used to be the same way. Perhaps in time this will change for you as well.
 
My experience is similar, although I also get a rash from any sun exposure. I'd love to be out in the summer, but the consequences aren't worth it. I tend to dive from one air-conditioned space to another.

Now that I'm feeling a lot better, I'm experimenting with the heat and sun to see if I'm less sensitive now. My short experiments with being out in the heat suggest that that symptom is less severe. I haven't tried exposing my skin to the sun yet. Now that I finally don't have red pinpoint specks all over my arms, I'm not eager to risk a rash right away. Maybe next month. ;)


SOC,

Sounds like some of the symptoms I've read about for photosensitivity. My understanding is that this is a bit different from "mere" photophobia. Photosensitivity can cause the symptoms on your skin that you describe. It is known to happen to many people with ME/CFS.
 
I can go out on overcast days that aren't too humid but the last 5yrs, I'm always better after 7pm in the summer. Even though I love the outdoors and love living on porch and patio, the summer months zap me of any energy. I usually ride the bike with dog or walk right before dusk. I actually feel faint in heat and lie on wicker swing or loveseat with my feet up. It's the most normal acting thing I do. People go past and say "that's the life", I laugh and think if you only knew. Most of the time I'm sorry to say I'm in A/C and it getting worse every year.


PNR2008,

I understand. It is a miserable thing to deal with. I can relate to people thinking I was "lucky" in my "laidback" lifestyle. To some casual observers I must have seemed like I was just on vacation all the time. If that were the case, I had the worst vacations of anyone I knew.
 
Never thought of that! I thought that was exotic gear only used by swat teams and such. You can buy them? How much, and how long can they work at a stretch?


Look here: http://activemsers.org/gear/testcoolingvests.html

An MS site tests different ones and also offers a discount. Quite a few of us here have used them. I have the Arctic Heat though there are better ones now that can last about 4 hours.

Sushi
 
I love summer, where I live the temperature usually only goes as high as 30degrees C, it's mainly in the 20- 28 range.
I find though that I have to wear shorts, as being overheated can be a problem. But found the shorts work well with that problem. I don't have a problem with the photosensitivity anymore, thank goodness!

I can't handle the cold in winter, my ME always deteriorates . I think because I shiver and shake a lot, and takes a lot of energy. Also the cold stirs up my sinus symptoms and I feel weaker overall. I get feelings of dread as winter approaches.
 
I love summer, where I live the temperature usually only goes as high as 30degrees C, it's mainly in the 20- 28 range.
I find though that I have to wear shorts, as being overheated can be a problem. But found the shorts work well with that problem. I don't have a problem with the photosensitivity anymore, thank goodness!

I can't handle the cold in winter, my ME always deteriorates . I think because I shiver and shake a lot, and takes a lot of energy. Also the cold stirs up my sinus symptoms and I feel weaker overall. I get feelings of dread as winter approaches.


Rosie26,

That sounds alot like me. I don't handle our hot humid weather like I did before I was sick, but it is preferable to what cold does to me. I feel cold before anybody around me does, and am prone to muscle pain, tendinitis, swelling from inflammation -- just from being a bit cold. Our floors are never quite warm, except for a month or so in the middle of the summer. And if I go barefoot in the house most of the year, I will end up with pain in my feet, swelling and may be rendered unable to walk for weeks on end. So even when it's 90 degrees outside, I make sure to wear sandals to protect my feet from the "cold" floor.
 
Jody

It doesn't seem fair that you only get one month or so of being able to walk comfortably in bare feet in the house. The cold causes inflammation to start up alright, it feels like the nerves/neural pain starts intensifying.

If I had a big house, and the money, I'd invite you here to spend the summer !! :) :)
 
Jody

It doesn't seem fair that you only get one month or so of being able to walk comfortably in bare feet in the house. The cold causes inflammation to start up alright, it feels like the nerves/neural pain starts intensifying.

If I had a big house, and the money, I'd invite you here to spend the summer !! :) :)


lol

What a great offer. What part of the country do you live in? :D
 
For years, summer was a bad time for me. I dreaded it. It's like the same as winter; you can't go out without dying of humidity and heat...just as winter you can't go out without feeling ill from the cold. So, for a long time I preferred winter and liked the quiet that it brought. People are hibernating and that fits in with my CFS.

Then, suddenly I started having SAD during the winter. Winter started bringing me to my knees, I would catch everything that came around, etc. Also, I have extremely low vitamin D. I feel so depressed now in the winter and I feel like my CFS just caves.

Today, I went to a pool. I do this as much as this illness allows because I feel so much better after a day outside and with the sun hitting my face and body. Plus, the pool helps with my pain. But even without the pool, I love to be outside. Of course, if it's too hot, that's not going to happen but even just seeing the beautiful sunshine outside just brightens my mood so much.

I now want to move where there is sun all year round and it's warmer. Where as before, I wanted to live where I could be close to mountains, freezing temps and snow.
 
For years, summer was a bad time for me. I dreaded it. It's like the same as winter; you can't go out without dying of humidity and heat...just as winter you can't go out without feeling ill from the cold. So, for a long time I preferred winter and liked the quiet that it brought. People are hibernating and that fits in with my CFS.

Then, suddenly I started having SAD during the winter. Winter started bringing me to my knees, I would catch everything that came around, etc. Also, I have extremely low vitamin D. I feel so depressed now in the winter and I feel like my CFS just caves.

Today, I went to a pool. I do this as much as this illness allows because I feel so much better after a day outside and with the sun hitting my face and body. Plus, the pool helps with my pain. But even without the pool, I love to be outside. Of course, if it's too hot, that's not going to happen but even just seeing the beautiful sunshine outside just brightens my mood so much.

I now want to move where there is sun all year round and it's warmer. Where as before, I wanted to live where I could be close to mountains, freezing temps and snow.


Misfit Toy,

I'd crash like clockwork every fall ... weather was still summer weather, but once the days started getting a bit shorter ... I'd start to slide.

The pool sounds lovely, soothing. I think all of us who can't take the extremes of temperature should live somewhere where it's 72 degrees all year, with low humidity. And plenty of pools.:)
 
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.