[macfamily53]

Good morning everyone

I am posting this to ask a question of anyone that has had this problem to.
When i was diagnosed with lupus like five years ago i was told that you should try to stay out of the sun when it is possible but did not realize how important it really was:sad:.This past spring i found myself getting so red it was brighter then an apple :sad:.I then did start to instead of wearing sunblock i wore long sleeves and sometimes put the sunblock on but just plain forgot to put it on was not intentinal really.Well now long story short i had only a portion of my cheek in the sun in the last two weeks while in the water and it literally turned my cheek on the right side very red then it was very blotchy on the enck and the chest.athen finally it did turn birght red all the way down to my legs some.My rhueme says that i should stay out of the sun at all times if possible because it will turn into a very bad sun sensitivity rash that will have to be treated with prednizone and many other drugs:sad:.I dont know if anyone else has had this happen but it does really upset me because i do love the outdoors like you would not belive.I also if i am wearing lots of layers of clothes i get very warm and cannot take that either.So i was just wanting anyone that does not take the advice to not be in the sun without being coevered trust me take the advice and stay out of the sun as much as you can or just make sure everything is covered and definately wear sun block.

Tammy

 

[LolaLola]

Hello Tammy, Yes you can get bad rashes, also the sun can make you feel ill all over. Aching joints, headache, weakness. It is well worth taking every precaution.
x Lola

 

[FranS]

Hi Tammy,

I felt the same when I was diagnosed in 1998 - I am a keen gardener, had an allotment, walk my dog a lot .... I did the same & thought it would be ok & it wasn't - had flare ups a lot. Learnt the hard way tho & now garden later on in the day & don't have the allotment any more..walk the dog in the evening.

I have however recently forgotten my lesson & had to relearn it again to the cost of my health...I took a van driving job the beginning of the year & had to give it up recently as the sun exposure made my skin a lot worse & somedays I would have to go to bed as soon as I got in from work & would sleep from 6pm to 7am the next day as I was so exhausted. I was also having to take time off & eventually had to hand my notice in & didn't work for a month to recover. I've just started work again as a support worker but realise that my health has to come first & that I can't fight against this as there is no point - I have to do all the right things to help myself, one of which is keep out the sun. Not what I want but you do have to accept it.

I hope your journey to acceptance isn't a long hard one like mine has been.

Fran
x

 

[Douglas]

Howdy Tammy,
Have only once since the Dx had any sun on my skin: the back of my left hand. It instantly blistered, took on the colours of the Canadian Flag, and my joints all over my body soon flared up and hurt. Since that memorable day I wear a dashing hat (Confederate cavalry officer's hat), long sleeves, light leather gloves even in the hottest weather, and SPF70 sunblock. I would rather look like a vampyre than like a zombie.
All the best,
Douglas+

 

[macfamily53]

Thanks LoLa,fran,douglas for your input on how to stay free from our rays of sunlight.I have been really trying to stay out of the sun until like 5:30 at night when i go for my nightly walk with my nieghbor.If i go out during the day i am only in the car and out in the sun for like a minute maybe.
i sure do understand what you mean douglas about looking like a vampire instead of than a zombie also(((hugs)))but i am sure you like me would just like to enjoy the beautiful weather.Take care all of you and thank again for such caring advice(((((hugs)))).

Tammy

 

[Surferboy]

Tammy, I also learnt my lesson recently. Even though I don't get rashes the sun does make me ache and the fatigue kicks in hard. This is with long sleeves and sun block... and cap!

I guess we all just have to be that little more careful