Holidays in the Sun

[laura87]

thanx for all the lovely replies, its really nice to know there are people who understand what im going through. my docor has put me on plaquenil and i havnt had any side effects from them which is a positive thing. However, im at uni at the moment and all my friends are alking about going on holiday to crete in june. After having a quick chat with my doc on the phone she said shed be concerned if i went in june or july and if i did i wudnt be able to go nto te swimming pool during the afternoon or be out in the sun at all. I know its only small things but its left me upset thiking about future holidays and whether they will ever be fun! anyone who has any advice about going on holidays because this is my first summer knowing i have lupus. thanx a lot

love laura x x x

[marney]

Hi laura
im off round Europe for 15 days on the back of a motorbike & went to my docs with a similar question about protecting myself.
take your medication & if you are on the malaria tablets make sure youve started your course well in advance, put sunblock on as part of your daily beauty routine ( dont forget your lips ears & eye lids & LOADS on your hands hun) keep out of the sun this could be in the shade of a brolly & in the long run youll have the skin of a youngester for a lot longer than your mates (im nearly 40 & asked if I was in my late 20s the other day) :)

keep your head covered ..my hairs started to fallout & its a bummer!! you can get some cool scarves that protect your scalp (they stop u.v) from walking shops with some uber groovy designs.
Have a great holiday
love marney xx

[LoopyLoo]

Hi Laura,

My Hubby & I had our first sun holiday since my diagnosis at New Year. We went to Lanzarote & the sun shone every day.

I did find it very frustrating at first as I was always a sun worshipper. I wasn't even comfortable in the shade as my raynauds played up with the breeze.

For me it was all about compromise & adjustment or never enjoy a holiday again. I always covered myself in suncream before going out, never went out without a hat & always carried a bottle of water.

I would also suggest limiting walking to either early in the morning or after 4pm. I did manage some short dips in the pool but again with sunglasses, t-shirt & a hat.

You don't know how your body will react to the sun, you may be very sensitive or not at all. Don't take any chances, especially abroad.

If you're going with friends give them details of your condition & medications just in case you had to visit a local hospital. Also make sure you have enough meds to last you.

A last tip - I really didn't mean to go on - standard travel insurance is unlikely to cover you for a condition like Lupus. There is a sticky here listing some reputable ones. I used Freedom with no issue whatsoever.

Hope this helps,

Hugs,

Pam xxx

[shelly21]

ok, i think im about to give really bad advice here, and i apologise in advance!!!

i really dont know about all this. i holiday quite frequently with friends, and became so frustrated that i couldnt do anything. so i just go along with them, until the rash gets too bad and then i cant. yes it might be really immature, and it might be dangerous, but there is a limit to how much i can miss out on. it is bad enough missing out on all the sports activities that i need to do something.

call me silly, but i think each person needs their letout...

anyway, enjoy your holiday, i hope all goes well

Shelly
x

[lazylegs]

Hi Laura,

You can still have fun on holiday you just need to take precautions. Remember to take your meds, cover yourself with sunscreen (45 or higher), wear a hat or carry a light colored umbrella. You can also purchase clothing with sunscreen. Go out in the early morning or evening. Stay out of the sun during the heat of the day. Take that time for indoor sightseeing or a nap. If you tire easy you should consider using a wheelchair. It would help you save some of your energy to experience all the things you want to do. Also speak with your doctor about getting some prednisone to get you by if you do start to flare while you are away. It is also important to stay hydrated.

Your days of being a sun goddess are probably over but you can still have fun. Don't over plan your days. Take naps or get a massage in between activities so you stay well rested. You may even need a down day. Listen to your body. It will let you know when to slow down. If you plan ahead you will be surprised how many entertainments are not in the sun.

Take care,
Lazylegs

[LoopyLoo]

Shelly,

I don't mean to rain on your parade & please call me a party pooper but........ there is at least 1 member here who now has kidney problems due to just one time of not taking precautions in the sun.

There are others who's kidney problems increase after sun exposure despite taking precautions.

The sun is an immune stimulant & it's not the damage you can see but the damage you can't that's more dangerous.

I was the same as you......but what is more important? A few fun times against a lifetime of serious health issues? You can have fun & also stay safe.

My 2 cents,

Pam xxx

[raggedyann1]

Laura,

It is about being creative. Look up Crete on the internet and see what museums and other activities they have. The sun makes me flare and I just won't compromise my body like that. I am much older than you and last summer our vacation was in a motorhome. I would stay inside during the heat of the day and get out only for inside activities. One of the things we also did was to take scenic drives.

You are young and changing your patterns now will be easier than being really sick later. I would hope your friends will accomadate you on some days and other days you need to accomadate there playing in the sun. I tend to tire easily and took many afternoon naps last year.

Take care,
Karen

[laura87]

thanx for all your really useful advice about my first holiday. I think going abroad in the summer time this soon to me being diagnosed was a bit much for me. It just so happens that my friends were going on another break away to a seaside town called filey in the uk. This will be much cooler but i still gte to have a break with my friends. However, all of your advice was really useful for my future holidays and stopped me thinking i was never going to have a fun holiday agen .

love laura x

[Judy Seagrove]

I have to agree with the posts regarding what you don't see. The rash is a result of a symptom. That symptom for me, is ususally feeling horrible after being in the sun for a long period of time. I think we all should know our healthy limits of how much time we spend in the sun and the damage it can cause our bodies. The good news is with or without Lupus everyone is watching how much time they spend in the sun.:)

Judy Seagrove

[shelly21]

Pam, your totally right, and i know when im sitting in sun that its silly, and my skin tingles etc, but i find quite a few aspects of all this really daunting, being quite new to all this and all, sun being quite a big one! im a big holiday goer, and i hate that restriction... if skiing would be an option then it wouldnt be so bad, but my body would never handle that so... am going away on Monday, and i really will try and find other things to do, but it is really difficult!!

thanks Pam, your right as always:hehe:

take care

Shelly
x

[LoopyLoo]

Hi Shelly,

Firstly let me apologise if my post seemed abrupt, I kinda regretted it afterwards. I know how scary & new this is to you, if I'm honest it still is for me too.

Hubby and I live for our holidays & have been to some fantastic places. I know that doesn't have to stop but I HATE HATE HATE the fact that I have to make adjustments. Everyone used to be so envious of how well I tanned with little effort. And I loved the way I looked, it made me feel good about myself.

I've realised life's too short to worry about it and a good fake tan can do the job just as well.

I hope you have a fantastic holiday Shelly. Can't wait to hear all about it.

Take care,

Pam xxx

[Jynnieneal]

I did not know that being in the sun can add to kidney involvement. I have some kidney damage, and nobody told me that this could further the damage. I actually was only told that I could have some sun sensativity, but they never told me to avoid the sun. I was just diagnosed this past winter. In the last two years I started to burn in the sun. I just chalked it up to getting older, and my skin changing. Do you have literature that actually states the sun can add to kidney damage? If you do please let me know. Thanks, have a wonderful day!

Jyneal

[Lily]

Hi Jyneal,

I have only ever had more minor problems with my kidneys thankfully, but sun exposure did stir them up..........we found that out by how awful I felt afterwards and subsequent dipsticks tests. I started testing at home and without fail, every time I had sun exposure I developed red cells in urine, and protein. If I had been out there for a while or had off and on exposure over a few days I had LOTS of protein. It's not limited to skin or kidneys either, lupus activity can be stirred up anywhere by sun exposure if you are vulnerable. I get vasculitis in my brain and if I am in the sun for any length of time (even with protection) I can start flaring with that too :eek: So you can see why many of us are so careful. Things werent always that way with me, I started out with rashes, pleuritis and sore joints..........intermittently. With repeated exposure and me not realising the connection it started happening all the time and gradually became more serious!

http://www.uklupus.co.uk/fact12.html


Why do some people with lupus get other disease manifestations after sun exposure?
The immune response to cell constituents results in the formation of these special proteins called antibodies. The antibodies are made by white blood cells called lymphocytes that circulate in the blood and both the lymphocytes and the antibodies can travel to different parts of the body.
These antibodies in lupus are directed against, and bind to, particular molecules such as DNA and Ro. These cell constituents may be released by other dying cells in the body as it appears that the inability to clear dying cells is not limited to the skin. Wherever the antibodies and their target molecules meet up and bind together, an immune complex is formed which can set up a series of inflammatory processes causing disease manifestations in that part of the body. Having said this, it is still not entirely clear why different people with lupus get certain disease manifestations and not others.

http://www.rheumatology.org/public/factsheets/sle_new.asp

It is not known why this inflammatory reaction begins, but it probably occurs because of some combination of inborn or hereditary predispositions and environmental factors (such as viruses, the ultraviolet rays in sunlight, Silica dust, and allergies to medications). Recent research suggests that people affected by lupus may have a defect in the normal biological process of clearing old and damaged cells from the body, which then causes an abnormal stimulation of the immune system.

http://www.cnn.com/HEALTH/library/DS/00115.html

Sunlight. Exposure to the sun may bring on lupus skin lesions or trigger an internal response in susceptible people. Exactly why ultraviolet radiation has this effect isn't well understood, but scientists suspect that sunlight may cause skin cells to express certain proteins on their surface. Antibodies that are normally present in the body then latch onto these proteins, initiating an inflammatory response. Damaged skin cells also seem to die more frequently in people with lupus, leading to even more inflammation.

love
Lily