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Discussion Starter · #1 ·
Folks,

it seems that us lupies cannot love this great British weather we've had for the last few days. Beautiful sun. 28 degrees. Not a cloud to be seen.

My question is, what can we do in everyday life to avoid the sun?

Putting on sunblock makes the face look greasy. I can't wear a hat as I'll look a mess when I get into work. I can do my hair, but that takes a long time :rolleyes: Wearing long sleeves makes you heat up like when in a Sauna.

I used to love the summer :(
 

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Hi Surferboy,

I'm sorry to hear your summers are pulled away from you the way you like them.
I just want to say,, "I know just how u feel".

I was the one that spent all day outside,, jogging, biking, swimming, walking,, sitting in the grass and just being.

Now I am fighting to enjoy what i can and when i want too.

Everyday i spray on sunblock and use the greaseless sunblock on my face. Even if I don't go anywhere I put on sunblock because i have windows with little coverage on them as i love the sun. So I can't walk around my house without sunblock.

I have hats and sunblock clothing found online. I do inhouse chores in the morning and do outdoor chores after 3pm.
I find traveling in a car limits the amount of uv your body is exposed too,, so i will drive that extra mile to a grocery store just to enjoy being out.

Before I was diagnosed a bought a car with a huge sunroof which i only use at night.

If you keep sunblock on and top it off every hour or so you can most likely enjoy your summers sun. Just remember not to over do it, cuz once you do you can start a flare (that flu like symptom to the 10th power) that will last.
Its helpful if you are on medication. Plaquenil is what most of us are on,, it takes up to 6mos. to kick in, good but once it does, it helps to keep flares away or shortens the flare time. My Celebrex helps with my joint pain.

I look at not being able to enjoy the sun the way I used too as a sunblock. But there are plenty of other days in the year where we will look normal with long sleeves and a hat and won't have to worry about the sun as much.

Is important we focus on trying to have a quality life with our new challenges. You should still dream and dream big,, just dream differently with you new challenges and you can still have a fun life.


Good Luck
 

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I'm lucky in that I'm my own boss so wear whatever I want :)

I have been converted to sun protective clothing which is extremely light, well ventilated and gives a sun protection factor of 50 spf. Unfortunately it is not that easy to find a good choice in the UK or Europe. The best choice I have found is at coolibar.com but the duty is crippling. Nozone in the UK is not bad but the choice is limited.

For the hat, I have finally found happiness in the form of a Buff visor.
Of course I'm a girl, but they are worn by men too.

You can google all that lot and if you do a general google for "sun protective clothing" plenty will come up.

Finally, you have to get in and talk to your chemist for the sunblock on the "bits that stick out". I have found a non greasy sunscreen with SPF 50 protection that is more like a moisturiser than sunscreen. It'll take a while to find one you like but hey, that's life...

hope that helps a little :)

Katharine
 

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Discussion Starter · #4 ·
Wow! I didn't realise I had to be careful inside the house :eek: I also have large windows which beam lots of sunlight in.

And I have always bought a car with a sunroof as I love driving with the air over my head :( So now must keep that shut too :(

Do ALL SLE sufferers react badly to sunlight? Or is is just some?

My GP reckons it's a load of rubbish about sunlight! Also, the consultant I saw encouraged me to carry on playing football etc
 

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They call this a finger print disease, because everyone is different. There are different degrees of illness, different reactions to symptoms and meds etc. Some have organ issues, some don't, they just have achiness and tiredness.
Many people don't know that the skin is an organ as well and is often attacked by lupus. Its an easy target since it is exposed to lot of chemicals, sun, etc.

I had to stop wearing perfume years ago, it would cause inflammation and mad itching. This was long before i was diagnosis.

Since diagnosed, I have been warned by rheumatologists and dermatologist to beware of sun. I have also found that i don't do well in flourescent lighting.

Every doctor has their own beliefs.
I don't know what your GP will tell you when you get a rash from being in the sun unprotected or when your symptoms get worse. Many people here with lupus have complained of just that.

Some doctors, even rheumatologist don't know how to treat lupus and their patients. I should say more than some. My first rheumy didn't want me as a lupus patient, he was good at diagnosing and knew to put me on prednisone,, but didn't want to deal with much more than that. He was the one that said, there are crazy people in online support groups and i shouldn't go there. That was two years ago. He gave me my file and told me to look for someone else. He mainly treated the elderly. Now I am with Arthritis and Pain Management. They are a group of doctors that deal with lupus patients. And my dermatologist says sunblock, sunblock,oh yeah, and did i mention,, sunblock.
I believe a lot of doctors tell you not to worry about symptoms and keep playing football, so that you don't turn into a hypocondriac. Which is easy to do since something always comes up mediacally with us lupies. I guess they believe if you don't look for it, it is less likely to happen.

Best advise is to keep living your life as you normally would,you will know your limitations eventually. Then you'll have to find a way to get past it.

Personally, my lupus hit like a rock. Back pain, flu like symptoms,, eventually kept me from walking. After seeing a number of doctors, i found my way to that rheumy who started me on treatment. It took me months before i could get back on my feet enough to be able to walk through a parking lot without losing my breath and suffering excrutiating pain all over my body.

I had persistance. I knew something was wrong even though the doctors said nothing showed through their tests. Now with the help of some good doctors rheumy, GP, Dermy, Opthalmy, I am back to walking again.
For me,, getting used to this disease was like running into a brick wall all the time. No way around it. I had to except it, embrace it, in order for me to get through to the other side of that wall.
No matter what the doctors say,, listen to what your body is telling you. Don't settle for take 2 asprin and call me in the morning.

Well i think i have said enough..

Good Luck
 

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Discussion Starter · #6 ·
Sadieone, all I have to say to your post is LOGICAL AND SENSIBLE :)

And it was great to read at the end that you are literally back on your feet :)
 

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I believe about half of lupus patients are sun-sensitive. Sun sensitive meaning getting a rash from the sun OR having a worsening of symptoms (usually flu like symptoms but sometimes also protein in urine too for example) following sun exposure. Over time you will be able to tell for yourself if you are sun sensitive - but it's probably well advised to stay out of the sun's way during the strongest sun hours of the day for a variety of reasons including UV effects on skin/skin cancer, to protect against possible worsening of lupus, etc.

I would continue with physical activity for as long as you feel able, it's good for you and I am one of those that really believes staying active helps my joints, my mood, my sleep, and much more. My physical activity level is not what it used to be, and I don't do things like lift weights as that seems to make me flare, but a nice walk every day with hills is just right for me. I do more when I feel better....
 
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