Reading your posts I feel quite fortunate that my Lupus is currently somewhat in remission - which is brilliant. Remembering back to 2014 I know how low you can get and how alone one feels with all the symptoms that get thrown at you.
Life has recently thrown me a major emotional curved ball which I am trying to work my way through - a friend has suggested that getting away would be a good idea. She lives in Australia and is a darling for offering me a safe haven to decide my next life step. My question is - what is the likely effect on my Lupus and how do you all cope with the heat/sun etc.
Any thoughts?
VikingL
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VikingL
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What a wonderful opportunity! Actually, I'm off to Oz soon for 8 weeks. Picked spring time so that it wouldn't be too hot. However, in terms of sun protection you really do need to be strict with your factor 50+ (if you're not already). I've also bought a factor 50 sun hat from Orvis (outdoor clothing specialists) and am ordering an umbrella to be delivered to my friend for those days when I don't want a hat. Clothes wise, cool and loose; try to sit in the shade, and have a fab time.
Thank you for your reply and the hints. I have to travel in November due to work constraints but with the replies so far on this forum I am not quite as worried that this would be a bad idea.
It sounds like a wonderful opportunity and with the right preparation and precautions, I imagine you'd be fine. We have an article about going on holiday with lupus which may have a lot of advice you'll find helpful - lupusuk.org.uk/going-on-hol...
We also have an article about light sensitivity which may help with the sunlight over there - lupusuk.org.uk/coping-with-...
Thank you for your post and the links which are most useful. I want to take the opportunity and not only visit my friend but have the space to think out my next step(s) and have my Son to thank for suggesting a Forum as the best place to get some Lupus in Australia advice.
I have read both articles (and printed them off for future reference) and will also talk to my Consultant re medication etc.
This is going to take a bit of planning anyway but with the help I am getting from you guys - not as hard as originally thought.
I went to Australia last Xmas to visit my daughter, like you my symptoms haven't been too horrible recently. I was really concerned how I'd deal with the sun more than the heat, or if it might trigger a flare but I used Ultrasun 50+ sunscreen kept on a hat stayed out of the sun during the hottest times of the day, sensible with or without lupus. The Aussie's are so much more switched on with the hazards of the sun. The journey is arduous so give yourself time the other end. I had the best time felt a lot better than I have in years I think the dose of VitD from being outside a lot and warmth helped my joints so much.. Make sure all your medical issues are covered by your insurance medical care not cheap in Oz. Have an amazing time I loved every minute of it. Hoping to go back next year
Thank you for your response - it is all beginning to sound more possible each reply I get
It was my son who suggested the Forum, and I'm glad he did. I am planning to be in Australia for 8+ weeks so was thinking about a stop-over on both journeys or upgrading to Premium Economy rather than a cheap flight - now with your comments I think that is going to be a good idea.
I am waiting back from my travel insurance provider to see what there terms and conditions are for Worldwide (I work in Europe so I already have 365 cover).
When I flew I went with Singapore air who were fabulous we flew economy but chose seats with extra leg room I paid a little more for it we had a 2hr stopover long enough to have a walk around Singapore airport which is awesome and freshen up before the next leg. But if you can premium economy would be great.. I didn't have any trouble with insurance but make sure you search around prices vary greatly. Also take your prescriptions or a letter from your doctor listing your meds and register with Medicare as soon as you can it gives you reciprocal Heath care. I hope you have a great time I loved every minute of my time there
Have had some responses to the insurance and as you say they do vary when you read the conditions!
Reading other advice I think a stopover is going to be a good idea (to and from). It was something I had wondered about. I am hoping for Premium Economy if I can afford it but if not the extra legroom will be OK as well. Better to have the stopover if it comes down to finance.
I hadn't thought of the letter from the Dr and Medicare registration - as you can guess I now have a growing list of 'must do's' etc.
My trip to Australia came at a time when I was really sick and it was a case of "now or never". That was in 2001.
I am so glad I did it. I needed wheelchair assist to get there and walked off the plane on return 3 weeks later. The improvement in my condition was truly amazing.
It is now 2016 and I am an Australian citizen I have been here 9 years. I still have many issues but I am back nursing in ICU and loving life. The climate the food the cleaner air in Queensland suits me well.
Give it a go. You too may be lucky. Good luck and I wish you well.
I went to Oz in January to visit friends, and had a fabulous time. I knew I'd find the flight tough so I really took my time over it. I flew to Dubai (7 hrs), stayed two full days and one night, then on to Sydney from there (14 hrs). I then booked into a hotel for 2 nights before meeting my friend. That way I could adjust/sleep/'decompress' at my own pace. It worked really well for me and I really was glad I'd had the proper stopover. I didn't see much of Dubai but it was mega convenient. I've also broken the journey in Hong Kong before which was fabulous and you could spend several days on a stopover there. For what it's worth I flew with Emirates in January and they were great. I was worried about legroom as I'm tall and hate being trapped in but their economy seats were surprisingly comfortable on the aisle. Hope you do go and have a fabulous time
Thank you for that very comprehensive advice for the journey. This was something I was wondering about how best to deal with and you have given me some practical suggestions that I will investigate.
Did you do something similar on the return to the UK? I need to plan this also - as work have given me 2 - 3 months away I had better be fit for work on my return!
I really appreciate your help (and those of others on the forum) and glad my son suggested asking fellow sufferers direct online.
Yes I did, I pretty much reversed the plan so had the same stopover on the way home and I planned it so I had at least 3 full days at home before I went back to work. If you had longer that would be even better. I also meant to say that because Australia is hot all the time, they are much more set up for it than the UK - air conditioning everywhere and they are serious about their sun protection. Also, depending on where you're going November might be nice and warm rather than searingly hot. Melbourne might be lovely that time of year - can really recommend Philip Island to see the penguins!
It depends which part of oz you are coming to how it will affect you I think. There are so many different climates. Coming in summer, my advice would be the same as everyone else's. Wear sunscreen, stay indoors around midday. Most houses/hotels are equipped with airconditioning as well.
It will be Queensland and my friend is fortunately a health professional, so will be aware of some of my limitations and the fact that as yet I do not know how I will react/cope with the sun and heat.
Reading everyone's advice has been tremendously helpful and I thank you for yours too.
Hello. Sounds like you have to do it! How exciting!
I have never flown that far, so cannot help with travel tips. But since diagnosis I have been abroad once, to Crete and that went well so, next week am flying to Italy with my family and 2 other families for a 2 week holiday. The temps will range from 30-41 degrees by the looks of the recent forecasts. I am always a little worried but then who wouldn't be with sun sensitivity in such a hot country. However, I find looking after myself much easier when on holiday. At home, I am mum to 3 children, a wife, I worked part time until very recently and run a home etc etc, you know what it is like I'm sure. But when we went to Crete, we stayed in an all inclusive hotel and I didn't have to cook or clean etc. I had more time to make sure I was covered from the sun and I rested - the children were in the pool a lot and my husband loves to swim. I sat under an umbrella and covered myself with rash vests and hats and sunglasses and cream etc and read 3 books during a week. This holiday will be different as we are with other families, who may a bit of a shock at how much I can sleep etc and we are self-catering. I plan to be realistic about what I can and can't do. Days off in between trips/excursions etc. Keep the evening meal simple - BBQ etc and hopefully eat out a few times. And although I am photo sensitive with Subacute Cutaneous Lupus (SCLE) I also have osteoarthritis and the sun makes that feel better.
Practically, I now have a great selection of rash vests from Boden (and amazon). They are quite expensive, so I buy when the sales are on. They are on now by the way. I have three pretty patterned ones and a plain navy one on the way. They offer factor 50+ protection, full length sleeves and a high neck, so the places I tend to have trouble with are well covered. (I don't find sun cream enough on my body). So rash vests a must. They can be worn with trousers or skirts. A hat. Sunglasses. My Sun Sense Factor 50+ sun cream prescribed by the doctor (actually manufactured in Australia if I remember correctly). Remember that if you hold the item of clothing up to the window and light comes through it, then it wont offer you much, if any, protection from the sun rays.
We have had travel insurance with Liverpool Victoria for about 5 years in a row now. A family, all year policy. They know I have a form of lupus but because I have no internal organ involvement to date and haven't been hospitalised due to my condition, our premium is still a good one.
I am taking a little print out of my current meds in my hand luggage, (printed by GPs surgery) with my meds. But a duplicate set of meds in my suitcase as well, in case either one gets lost.
I am sure you will get loads of tips from people on here, and lots of encouragement. After all we must try to live our lives despite this chronic illness.
Took 8 months of planning with my Lupus consultant and many fine tunes of my meds but I made it to my nieces wedding. I travelled business while hubby & kids went economy which was a god send. I slept and looked after me for 24 hrs flying. Air hostesses aware of condition and were brilliant.
I seriously crashed lupus wise when we got back but fully intend doing it again with my Lupus consultant on board.
Would recommend 3 days rest on arrival to get your body acclimatised. Go for it. My Moto in life now. 😄👍👍
Thanks for the reply. Yes I guess it is all in the planning ......... With other advice I am going to do reasonable stopovers for both journeys as well. I can't manage business but can Premium Economy and my friend is aware that I will need more time than usual when I arrive but as you say - now or never.
I am now, quite looking forward to the adventure and allowing myself time to evaluate and plan my future.
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New to the forum and wonder if I can pick your brains...
Oral hygiene on point but always need dental treatment at each visit !!!! Can this disease attack your gums too I wonder !
Haven't been diagnosed, but wondering if anyone has this symptom
Visit to Incontinence Clinic
