Discussion in 'Phoenix Rising Articles' started by Mark, Jul 4, 2013.
Enjoy summer, Gracie, put your shorts on if you do start to feel hot. x
I HATE the summer with a passion.
I used to be a beach girl when I was 17. Than I became ill and with that heat intolerance, photosensitivity which is different from photo phobia. In photosensitivity the immune system sees the rays as invaders and attacks them. Causing an autoimmune reaction leaving me violently ill.
If the sun is out I only can go and sit in the yard when the sun has go down. I'm mostly bedridden now but the years I was still able to walk it was tough. And still is. I send hubby away to go to the park swimming with the dogs and have fun. But the ugly green eyed monster sometimes rears his head. Luckily no one can hear me scream at that point.
I'm a fall and winter gal. I love the crisp air the beautiful colors of the leaves. On a good day I can sit on my front porch. Ahhhhh, can't wait!
That's very interesting, Helle - I hadn't heard of photoimmunology. Shame about all the poor mice though...
I walked into town today and the weather is too hot for me. When it's like this, the slightest exertion brings me out in a sweat and exhausts me. It seems consistent with producing heat instead of ATP, which can happen if there is uncoupling of ATP production from oxidative phosphorylation.
Wondering whether this could be related to acidosis, I just did a search and found this paper which looks very interesting and potentially relevant:
It is like a heatwave in Cornwall this week! Reminded me how I can no longer tolerate it. Spent Sunday afternoon with my niece and nephew and their parents and my own, sat mainly in the garden under a shade. After a couple of hours they drove me home. It was too much. Yesterday was crap. All day was unproductive. Today isn't much better.
Is it all down to the heat? Well I don't know. Am carrying extra baggage these days; but hot temperatures have always caused me to 'flare' since getting this wonderful diagnosis whereas before they definitely did not. Also, I am 43 years ancient now compared to 29 when I began my journey.
I think heat is exhausting. I think humidity is worse. I function far better in the cold or cool. Temperature regulation is of course a common issue associated with our condition; and excessive sweating especially - most noticeably - at night: is typical for me and disgusting.
At least I can now tolerate the sun's brightness. I can draw back my curtains. So I am pleased so see the sun at least
If 43 is ancient I must be prehistoric!
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 trust you have tried this, young man. If not, why not?!
MeSci the flippant 'male on a safa beligerant' response is: I have lost too much already; did the diet crap; and can't be arsed to lose anymore of especially the small things that remain. I don't eat much as it is. My extra pounds are due to lack of ability to exercise. Nothing more. And with knobs on
I think you're wrong, and I bet I recover before you.
I have the body of a spoilt brat. If it gets too cold it turns purple and blue like a toddler having a major tantrum and refuses to function. It insists on overly dramatic uncontrollable shivering just to make a point.
Then it gets warmer and the spoilt brat body behaves reasonably well - with occasional attacks of refusing to breathe just to keep me on my toes.
Then it get's too hot and it likes to get flaky and have over dramatic black outs and battles with gravity. Then for some completely unknown reason it will go from way too hot and complaining about the heat to shivering in the same heat.
A lot of the extra weight we folks lug around is drug fat; I've been on enough steroids over the years to make me the size of an elephant and with added amitrip it's a wonder I'm not a whale.
Many of my forebears would take a jolly off to Egypt for the winter months to avoid the English weather. I'd love to do that - or did.
Now I think the heat would do for me. I last had a trip to Turkey and that was tough going, but tougher than hot dry heat is hot humidity. Now that IS energy sapping.
I often wonder when on the forum and checking out where others hail from how those who live in the southern states manage with the humidity. I have been to Florida twice when well and I still remember that unique damp heat. Phew!
Looking back I reckon I have sweated 10 years of even my current body weight (OK I am not huge - just bordering on overweight according to the quack but it's too much in relation to historic norms and I hate it).
I also hate waking wrapped in wet sheets. Not a very nice way to start the day - and that's regardless of the external temperature.
I used to tote around a large fan wherever I lived. Fortunately, I seem able to manage better in my current old house with it's nice thick walls. Stays pretty cool most of the day.
Unfortunately, it means when the weather is like this I tend to hibernate and venture out even less than I am normally able; or at least I am far more cautious - early morning walks and late evening soirees
I have never taken any drugs specifically for ME, and was only on desmopressin and an ACE inhibitor when I put on a lot of weight. I was under a lot of stress though, and eating a lot of carbs. I'm still on those drugs, but lost the excess weight after cutting out gluten and going low-carb. It was so easy. No hunger. The fat loss and muscle gain have made it much easier to do everything, improving my balance, strength and co-ordination.
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!
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.
(I have no financial interest in this product, I just found that it works for me and thought others might like it, too.)
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.
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:
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:
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.
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.
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.
You can also try a Google Site Search
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