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Discussion Starter · #1 ·
im just wondering how people go on when its hot and sunny. i work with children and for most of the day they are outdoors when the weather is nice. im finding it really hard to cover up in this heat but if i dont im burning within 10-15mins of being out in the sun. Im becoming drained, i have no energy and become really tired, im just not coping very well with it and i dont know what to do. i try and stand in the shade as much as possible (when there is some) and wear things which are made of cotton (although covering up with long sleeves and trousers is making me sweat an awful lot:blush: ) i wear lots of sun block but this doesnt stop me becoming so tired during the day and having very little energy. how do other people cope with this??
if anyone as got any advice i would greatly appreciate it!
 

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Hi Bev,

Wearing a hat or using an umbrella might help. You may still be getting some reflection off of the playing surface though. Instead of trousers a long flowing cotton dress might be more comfortable.

Personally I couldn't handle your job. Being out in the sun and heat for long periods of time would send me into a flare. Even if I don't get a rash the sun affects me in other ways. It sounds like that may be the case for you also.

Take care,
Lazylegs
 

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Hi Bev,

Your job is a tough one especially with Lupus. I am wondering if there is any other jobs your employer can give you so that your not in the sun all day? I would sleep for days if I had to spend the entire day outside, especially if it is hot.

Maybe you should chat with your doctor about a note for reasonable accommodation and then bring it to your employer to see what they can do for you.

I wish you luck with this situation.
 

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Hi Bev,
I saw something the other day that made me think. People had taken some of the portable canopies and placed them over children's play equipment. It might help you to use at least one in the playground so you have a better chance for good shade and able to be in the "thick" of things too.

I don't think I could handle being outside that much either. I am out in the garden, but have a lot of big cedar trees in the yard so they give me a way to be out, yet safe.
Good luck,
Sally
 

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Discussion Starter · #5 ·
thank you all for your replies they are all really useful!

i see that you all struggle with being out doors and i think it is really affecting me this summer.

im only 25 and i am finding this year harder to cope with than when i was first diagnosed! i want to be like everyone else and not give the hot weather a second thought. i hate being different and people looking at me when im all covered up and its red hot or im putting a factor 50 sun block on and their using factor 10 oils or nothing at all!

i got home from work today and i just dropped and had 2 hours sleep but my body is wanting more, im just sleeping my life away at the min. its awful!

theres no point going to see my doctor because she has told me before there is nothing they can give me for fatigue, i just have to carry on the best i can :sad: it would be so much easier if i didnt have work work during the summer months!
 

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Hi Bev,

It's a difficult situation if your work involves being out in the sun :(

I guess what concerns me about this with you is that the extreme fatigue is a symptom of increased disease activity. With sun exposure and increased fatigue as a result then we don't know what else it's doing to us internally. It's not so much that the fatigue itself is hard to live with/through (and it sure is hard), but what's going on and building up because of the exposure. Case in point with myself..........whenever I have sun exposure my kidneys get inflamed. Luckily I'm aware of this and of course avoid the sun like the plague otherwise things would be worse than what they are for me now (and believe me that's bad enough).

The others have given you good advice about precautions you can take and I would just also make sure that you have periodic urinalysis and bloods (which you probably already are) to keep track of things that aren't always obvious to us until they worsen.

love
Lily
 

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Hi Bev

I do understand exactly what you mean: although I am a little older (31) and the children I work with are my own (3 and 4) life in this weather seems like a horrendous juggling between their happiness and my health: this afternoon they really want to go to the local pool, and I am trying to work out how I can survive this (cycling in the sun, then hobbling asap to the nearest tree, persuading them that they can swim without me being in the pool as this is utterly impossible). I too just feel utterly utterly exhausted and drained and achy and horrible in this weather. It's awful, i grew up being outside all the time, and now I just want to be hunkering down inside!

Biggest thing is: wear a hat! A big wide brimmed straw one is my fave option. And skulk from tree to tree with shade: if there's no shade where your kids play, there should be: I would make a fuss not only for you but also for the children. Standing in the sun is just a no no.

I have been considering getting a UV umbrella, i think sunsibility do one. Not that I'm going to have any hands left with my new walking stick! maybe they should make a parasol/stick combi...:)

Good luck, and oh for a respite from this weather...

x Hatty
 

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I saw a lawn guy the other day with a hat that has an umbrella on it...he said it's UV coated and works great - he got it at a ball game and I havent googled so I can't offer up where to get one....another suggestion a personal fan with a sprayer (they sell them here at the CVS - a kiind of drug store convenience store in the USA) I find that hydration outside as well as in does help me deal with the heat. I freeze 1/2 bottle of water then add more to melt and drink, I do the same with the mist/fan thingy and get really cold water misted...it lowers my external body temp.

Sorry I don't have more to offer beyond what everyone else said.

Also - true that there is no help for the fatigue, but you Dr can write a note about sun exposure so that you work can offer accomodations so that you get breaks or get to stay inside more often....

Stephanie
 
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