Sun Hell: Really starting to hate this sunny... - LUPUS UK

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Sun Hell

Hollydebs profile image
14 Replies

Really starting to hate this sunny weather and we’re only in June. Most of my friends are sun seekers so I’m in a minority. Almost want to hibernate until October.

Was awaiting a cab home Fri no more than 10 mins wait and my arms got affected. Been feeling crap since, not right at all.

Roll on winter!

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Hollydebs profile image
Hollydebs
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14 Replies
honeybug profile image
honeybug

😊🌸🌿🦋

Sooo sorry dear.

😊🌸🌿🦋🤗💕😘

Mifford profile image
Mifford

Are you using the right sunscreens? If you haven’t already then talk to your doctor about getting the correct ones on prescription - show them this photo so they can see the reaction as well as that helps. You then need to use it all day everyday at this time of year and literally not leave your house without it. If I spent 10 minutes in this sun waiting for a cab like that I’d be flaring like an old pair of jeans from the 70s!!!

It’s worth investing in some uv protective clothing for when you get caught out as well. Uniqlo do some reasonably priced hooded jackets and cardigans to cover up with which stop you getting too hot and look trendy enough to not stand out as being odd. They also have long sleeved tops which I use under t shirts - if you search for uv on the website you should find them all. Also try and get some Rit Guard Sunsense wash in powder - it’s not cheap but I buy about 5 or so packs and wash all of my summer wardrobe in it and it helps add an extra little bit of protection in to your normal clothes so is cheaper than buy8ng all uv protective specialist clothing.

Finally if your reaction is still there and itchy then if you can take a coup,e of cetrizine hydrochloride (anti histamines but non drowsy) and pop to a health food shop and buy some urticaria urens spray from wileda - it’s for insect bites but it works wonders to stop urticaria itching and to cool your skin down.

Hope you’re feeling better soon x

Hollydebs profile image
Hollydebs in reply toMifford

Thank you for that. Some useful info. Appreciated xx

Mifford profile image
Mifford in reply toHollydebs

It’s become my mastermind specialist subject the last few years 😂😂😂. Definitely check out the Uniqlo stuff though - it really helps knowing you have a backup if you get caught out x

skylark15 profile image
skylark15 in reply toMifford

Hi, again, Mifford!

Once again helpful advice, especially about the Sunsense wash in powder. Thank you.

Tess

KayHimm profile image
KayHimm in reply toMifford

Solbari is an Australian UV brand that I just discovered. Their long-sleeved, light tops are great. You will not get that rash on your arms any more! They also have a cute swim dress that keeps you fully covered.

skylark15 profile image
skylark15

Oh my goodness, I'm really feeling for you. I hope it's settled somewhat now. Mifford's advice is excellent.

Tess

nancarolyn profile image
nancarolyn

Have the same problem I hibernate in the summer. One of those things that go along with this disease for me. I feel better during winter and humidity here during summer makes my bones hurt worse.Yes everyone of my friends loves the beach. For me it is a hostile environment. I just stay under a tree somewhere and enjoy. There are worse problems.Having red hair and light skin anyway before all these health issues prepared me a bit. Hope you can get used to it and take care of you. Younger I went with friends because they did not have a problem and I suffered a lot for it. It is very hard not to go along with friends, but learned to be good to myself. Winter will soon be here again.Being able to say no thanks and not feel guilty is such a freedom. God Bless you.

dawnisup profile image
dawnisup in reply tonancarolyn

SNAP! Being a life long ginger with palest skin prepared me well However I did used to get out and about to the beach etc, just take care. That doesn't cut the mustard now however. In my first year of lupus, when I didn't know I had it, I was out for around 20 minutes in the late afternoon sun. The rash I incurred had to be seen to be believed. And it stayed for 6 months and I felt more ill than I ever have before. And so my lupus journey began. That was 5 years ago and I haven't been out in the sun since. I am left with white scars on my chest, under my throat and on my arms, of every lupus node, lump and itchy spot I had. So in some places my pale skin is even paler, just in small, weird shapes. Always a good look and they can't be covered over with make up. Sigh. At least being redheaded made for good practice.

Of course you know that being a redhead is part of the problem, all that Celticness?

I wish all sufferers a bearable if not enjoyable summer and pray for those lovely warm but overcast days when I can get ten minutes in my garden.

leslieliesel profile image
leslieliesel

And to think, I was a surfer girl way back in the 1970's.....those were the days.....I live on Cape Cod MA USA... Summer destination for sun, beaches, and fun!!.....Now No sun for me, no surfing(I'm 63) and great whites have migrated here.....some fun still Xx I got a sun lupus rash a couple of days ago while in my garden ...covered with sunsreen and UPF clothing..my leggings were to short so yep..rash on lower legs.....

Chanpreet_Walia profile image
Chanpreet_WaliaLUPUS UK

Hi Hollydebs,

We published a blog article with information and tips on how to cope with light sensitivity which you can read at lupusuk.org.uk/coping-with-...

NadiaHJ profile image
NadiaHJ in reply toChanpreet_Walia

Thanks for this I’m still relatively new to all this so info like this helps a lot

Chanpreet_Walia profile image
Chanpreet_WaliaLUPUS UK in reply toNadiaHJ

Hi NadiaHJ,

You can download or request our free info pack at lupusuk.org.uk/request-info...

mskmb profile image
mskmb

It’s the worst 😢. I have tried everything over the years and nothing helps. Sun Cream protects the skin and delays the Lupus appearing but it eventually comes out. Steroids do help with the skin but I only will ever use them if it’s really bad x

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