Just got back from a lovely and relaxing break from Centre Parcs in the Lakes! Weather superb, but spent most of my time dodging the sun - so much I was on the verge of paranoia lol! However, prior to my break visited many shops, Marksies, BHS, Warehouse, Debinhams and could not find any long sleeved Tunics. Ended up purchasing a cotton shirt from Fat Face which cost a pretty penny in the Lakes and wore that over my tops - after 4 days I felt like a tramp lol! Factor 50 and a wide brimmed floppy hat with big sun glasses - didn't look like a movie star but stood out for all the wrong reasons lol!
Can anyone recommend were I can purchase long sleeved tops, especially tunics now that the weather is getting hotter and I need to cover up?
Thanks, Lulabelle x
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Lulabelle
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Was exactly in the same position as you, impossible to find any light weight long sleeved tops. The solution I found was e bay, most are second hand, but you can be picky and only choose ones in good condition, many at really good prices too. I have bought about half a dozen off e bay and have been pleased with most of them.
I was going to suggest ebay too-go around charity shops and car boot fairs. You never know what you may find! The important thing is to cover up. I am trying to do the same! Good Luck.
If you google Uniglo. They sell cotton and linen tops and tunics. Some are long sleeved and they also sell a few uv protected items although they are not 100% protective. I've just bought a uv protected cardigan from them, i was expecting something thick and heavy, but it was really thin and light. Primark sell long sleeved Tshirts in different colours and they are as cheap as chips. Trying find suitable clothing for this weather is such a nightmare!
Hi been in Marks and spencers today and bought long sleeve linen top they have several different colours, Sainsbury's have some too, look in the swimwear section in the shops as they have a lot of long sleeve cover tunics that you could wear over a t shirt too. Try online if your local shops don't have them hope this helps
Linen does feel lovely and cool but I find that if you hold them up to the sun, you can see the sun through them - which for me isn't enough protection. White is particularly bad. I guess it depends on how sun sensitive you are. Lupus U have a great leaflet on protecting yourself from the sun.
Ladies you have all been little Diamonds. I have purchased 2 x long sleeved Kaftans from Very.co.uk in the sale one purple and the other black. Price including delivery £20. As front is a little lower than I would like I have 2 x string tops (thin) from Marksies that I can wear underneath for added protection.
I will keep my eye out for other bargains and let you know of anymore!
Keep wearing the sun cream, floppy hats and silly glasses lol!
Always worth trying Primark, H and M, New Look etc. Some Primark tops are so cheap I just throw them away at the end of the holiday as they are often stained with sunsense.
I feel your pain. I have SCLE and the sun is a huge part of my lupus. Saying that I have successfully managed two holidays abroad since my diagnosis.
I find that cream is unreliable for me, in that I don't always remember to re-apply as many times as I should. I have 3 children and life is chaotic enough, with out having to remember to re-apply sun cream. And at times I haven't covered my hands and my feet and I've burned and blistered as a result. I guess as with everything with lupus you have to find the right balance for you.
So I cover myself with clothing, as much as possible. Finding suitable long sleeved tops is very difficult. You don't want anything too warm, but then it has to be thick to keep the sun out. Did you know that if you hold an item of clothing up to the light and the sun shines through, it wont give you enough protection? And a white t-shirt gives you just 5 SPF.
As I have 3 children, aged 13, 11 and 9 I am out and about a lot during the summer months, trying to lead a normal life for their sake. Plus we live by the coast, so they love nothing better than beach days. I wear jeans or jeggings or long wide legged trousers, usually in a dark colour when it is really hot. Then on my top I wear rash vests or sun protection clothing on my top half. During the spring, cooler days I'll layer thinner tops, maybe two t-shirts and a light weight cardigan.
Floppy hats are a must and I'm the same as you, I feel so conspicuous! We went for a walk on Sunday, it was a glorious day and I have been unwell with a flare, so we needed some family time, out of the house. WE went for a little walk on the coastal path, my husband took one photo of my - sleeves pulled won on my jacket, jeans, trainers, floppy fedora hat and sun glasses. I think I look weird and freakish and all I can see is my butterfly rash glowing! Friends say I look glamorous, but I think they are just being kind as they know how hard I find it.
When on the beach I use a factor 50+ sun parasol. And last year in Italy I used this for walking about.
I buy Boden rash vests, looking out for sales and offers, as they aren't cheap. They are SPF 50+. But the colours are pretty and they wash very well. Plus they have a fairly high neck and so protect me well. They are long sleeved too and don't fell too hot.
I also found a supplier called Purple Turtle and they are a mail order/on-line store, supplying Craighopper - not sure I've spelt that right - but they do sun protection clothing and some have anti-mosi repellant built in too. I had a beautiful white shirt for Italy last year. Washed well. No ironing. And you could pull one of the 2 collars up to protect the back of your neck.
FInally, Amazon do rash vests as well and Land's End ladies clothing, again on line. I have just ordered two plain white rash vests SFP 50+. They also had plain navy. I thought I could wear a plain white rash vest with a pretty short sleeve tshirt on top or a thin blouse? Would make a nice change.
I have given up shopping in the high street for myself in the summer. I never find anything suitable. I have a wedding in October and my friends are already buying and getting outfits together - a well meaning friend sent me a picture of a gorgeous maxi dress for me - halter neck!!!! So I politely have to say - um, arms???? I need jackets or cardigan and then feel frumpy. A wedding outfit for me will take a lot of planning. Oh joy.
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Sun cream obsess
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Methotrexate for the summer
pain in the tops of my feet and stiff hands. 
Sunny weather and flares, help!
