I'm off on my first hopefully sunny holiday next week. I have my big sun hat, sun glasses, shawl/cardigans to cover the body and major sun tan lotion. At this point I think I am ok with sunlight but time will tell.
I've also got my sensible soft shoes for walking and a fold up walking stick if the hips / knees / feet decide to play up. If all else fails I'll kick mum out of her wheelchair (86 year old) and sit.
How life changes. At least I'm with sisters and mum and getting a break from bickering teenagers.
But anyway, any suggestions or warnings. It's a cruise with lots of sight seeing. I'm the youngest by 13 years but often I feel as old as mum.
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Whathappned
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That's 13 years younger than the sisters and they seem to have an itinerary and I'm not sure they get what pacing is at all. I'm 48, not fit, very excited about this but as I say first sunny holiday since all this connective tissue stuff started and a bit anxious x
It sounds like a lovely holiday with the girrrrls. You seem to be very well prepared and your preps seems very familiar to me
You could take a list of your medicine with you and possibly check in with the GP on board making sure he knows of your health condition.
About the soft shoes. My feet hurt as hell if my shoes are not stiff enough, thi is especially true for the shoe soles. Of course the material that touches your feet from above should be soft. I know this because when I was hardly able to walk I bought 2 pair of an A brand sport sneaker but my walking range was getting even shorter than the approx 15 minutes it is now. I don't have inflamed joints but my bursa and points where the achilles tendonds attach are also inflamed. I also have fasciitis plantaris. The muscles and tendons on my foot soles go in to some kind of spasm modus after walking 10-15 minutes and get really hard. Walking on those is even more painful than walking with the fasciitis plantaris.
Anyone else experiences this kind of pain and did they find the cause for it? How is it treated?
Have a wonderful vacation!!
Greets,
Patricia
Diagnosed with UCTD 2 years ago but I suspect I have SLE.
Thanks Patricia. I'm getting excited now. I've decided if the body plays up I will keep mum company resting in a cafe etc and my two sisters can whizz about to their hearts content.
Sorry to hear how bad your feet are. I agree re the foot wear. They have soft inners but they are made for walking.
I am out in the sun a lot, with garden, and I love being on the lake in my boat fishing.
I know that I will pay for being out in the sun. I get a lot of rashes, headaches, and more joint pain in the summer and it is because I'm out in the sun but, I WILL NOT LET LUPUS STOP MY LIFE. I have had to make some changes, I have a rash on my right foot for 2 years, I have had to go Barefoot for 2 years, everything I do and everywhere I go, I now have to go and do barefoot. ( now being barefoot feels natural and I have found out being barefoot is actually better than wearing shoes, I have less issues by being barefoot. Now I don't think I would wear shoes if I could. I'll just go barefoot)! I have not worn shoes in 2 years. I can now walk on any type surface from rocks, hot asphalt, cement anything. The bottom of my feet are now that tough.
The point to all of that is with our medical issues what ever they may be, do not stop living, do not stop what you enjoy doing. Do as I have done, adapt and overcome!
Somethings will have to change, maybe the way you done what you enjoyed (what you wear or don't wear now) but, don't let it stop you!
I agree totally. I try not to dwell on things and get on. I have a very mild form compared to so many on here. I have had a good year although pains have reappeared recently just in time for this holiday but I've got my naproxen and codeine. Might not need my vitamin d tho lol.
Hello Whathappned. I have SCLE and so the sun is my biggest risk factor for flares and symptoms. That being said, I have 3 young children and we've always had holidays in the UK and abroad and I didn't want to change their life styles without at least trying, for their sake's. So last May/June half term we went abroad for the 1st time since my diagnosis (in 2013 - so 18/19 months in). We deliberately went earlier in the year, knowing that the sun wouldn't be at it hottest in Crete. We had a week, all inclusive. I took it very easy and was very careful. I have 3 or 4 rash vests, with Factor 50+ material and I wore those with dark linen or cotton trousers, but also sat under a sun umbrella and wore my sun cream and sunglasses and floppy sun hat. I was able to watch my children swimming - now all good swimmers and didn't need us in the pool with them all the time - from the safety of my lounger and umbrella. As I told my dumb struck Rheumy when I got back and saw her, I probably took better care of myself on holiday than I do at home in the summer. I read 3 books. It was a very slow paced holiday. As I explained to her, at home being a mum to 3 children, I am always rushing. There's the school run and shopping and after school clubs. I often am running late and might forget to put sun cream on my feet with my sandals or on my hands. (I always out it on my face 365 days of the year, it's part of my morning routine). I was on holiday, no cooking, no cleaning, no driving everywhere, no chores. I had time to care for myself. We did take a couple of walks and I made sure I paced myself and covered up. But all in all it was a success. We have booked to go away again this summer, this time Italy in August - not sure how that will go but we have a villa with a pool, air con inside and lots of outdoor covered seated areas, so I will be reading and lounging as much as possible. We are with 2 other families and I am worried about how they will find it with me. They are good friends and understand the lupus but they may be shocked by actually being with me for 2 weeks! The day trips and outings will have to be every other day, at least a day to recover. Oh and ironically I have osteoarthritis in my hips and knees but the sun helps that doesn't it. How unfair. I am sure your family will understand your plight - not sure about your Mum and being tipped out of her wheelchair though! Ha ha. I hope you are able to find the right balance on your holiday and enjoy the time with your family - it sounds like a wonderful holiday, sisters and your mum, precious times to be treasured. I wish you well.
Sounds like you had a fab time. Time to spend on looking after you too. Like you say none of the usual hassles. I get that totally.
I think I'm ok with the sun but I've not been out in it much for a long time. I do do the garden but I'm forever in and out the house and being in the north of England we are limited on our very warm and sunny days.
I've just had a fabulous holiday and did exactly as you are doing, I also purchased a factor 100 sun cream which was fantastic! I did all the usual things but just stayed covered up, hats etc., all the things you have mentioned. I also chose May to go away as it was cooler, not so intense, best thing I did. Can still have a good time, just have to make some adjustments If you're interested, the sun cream is called neoVIDERM, I did buy it in Greece so not sure if you can purchase it here, I guess on line would be best. Enjoy your holiday x
Hi, the only thing I would suggest is a uv umbrella. They sell them on Amazon and also a company called Umbrella Heaven. I wouldn't be without mine, they reflect the sun away from you giving you even more protection. Enjoy your holiday.
Another thought-I also have sun lotion on prescription but I order from Amazon a high factor of 100 or 110 to use in the summer time. It is by Neutrogena but I have only been able to purchase it from Amazon. It's well worth trying that as well. I cruise myself, this allows others to do their own thing if I need to rest and take some shade. Have a wonderful time.
I've just come back from a cruise around the british Isles on the Caribbean Princess.
We cruise most years as it's the perfect holiday for me, very relaxing and a good way to see a new place every day or so with minimal effort from me.
My tips would be, take a range of shoes, as cruising does tend to make the ankles swell, some say it's because of the extra minerals in the drinking water due to the desalination process, but I'm no expert.
Discuss with your Gp if you should take and broad spectrum antibiotic with you it's very easy to pick up infections, unfortunately I came back with bronchitis this time, but don't let that worry you, I had excellent care from the medical centre, I get it alot anyway.
Don't try to do everything at once, just chill and take it as it comes, there is so much to see and do on a ship, but you've got the whole holiday to enjoy it.
Make friends with your cabin steward, they are so helpful, will often find you extra pillows, ice for your fridge anything really.
Just realised I have amoxicillin in the bedside cabinet. I was prescribed it for a tooth abscess if needed but it turned out I didn't once it was drained.
As you say I'm planning on chilling a lot. I've no intention on doing the climbing wall etc. It's a big ship I just hope there are quiet spots other than just my balcony as I find a lot of noise and bustle can get too much for the senses these days. And the girls aren't exactly quiet. I get quite short tempered when I am overloaded with noise and I don't want to upset my family.
My plan is enjoy the day visiting the places we stop at then back on the ship and rest. Biggest challenges will be Barcelona, Rome and Naples. Find a cafe and take in the view!
Well off to work now, going in early to make sure I finish on time Friday as I've a flight to catch in the afternoon 😀
On some ships there is an adults only pool and terrace to relax, often by the spa, often people don't realise they can use it even if they don't not have spa treatments booked, it's worth checking out.
In my experience Rome can be very hot and hectic, I take one of those title hand held fans and a small atomiser filled with water.
I'm back and exhausted to the point that I should be going to my course today and I don't miss that if I can help it. It's hopefully my way to leaving the job I am in and I love the course but as we all know you can push too far and end up ill for some time so something has to give.
Any way the holiday was busy. As expected , my well meaning sisters, didn't quite get my need to lie down and be in a quiet space for some time each day. I think they where worried I felt left out and I felt I couldn't say no every time. One sister loves to talk, luckily I was sharing with the other but even she loves a discussion about where we are going and doesn't get the hint with short one word answers or a 'Mmm' that I'm needing a break, lol.
The weather was varried and I didn't get the chance to lie next to a pool. The days on board where overcast and breezy on top. So I lay on my bed feet up to rest and get rid of the swelling in my legs. The left was particularly bad and I get paranoid in case I have mums problem of lymphodoema. She has had it for over 40 years, just came out of nowhere, no reason until her recent CA and they found she had no lymph nodes there.
I digress, I think I'm ok with the Sun's rays as I didn't get any rashes or major increased fatigue and we had a good few days of walking around in bright sun with my white skin on show ( that's ultra white). My skin tends to go pink and stay that way for days, eventually turning an off white - I got dads skin, as everyone else in the family has tanning skin. In the past I came back from 6 months in Australia with no visible tan. I did carry and use my hat and lotion tho.
The ship was amazing - Harmony of the Seas, I have no idea how they stay afloat! We where on the 12th floor and 3 more above us!!!! The whole trip and site seeing was excellent but I don't think I will be doing a cruise again for a while. I liked the ship but too big for me and I don't need all the entertainment of shows etc. every night, or should I say I can't do them but felt I'd paid so much I wanted to experience it. My hols are usually used to rejuvenate and I feel more exhausted now than when I went and I'm having to miss out on my best day of the week to make sure I can get to work and be 'safe' at it - my dog grooming course!
At least we got to take mum on her cruise. But my old mobile caravan in a field with the dogs, book, knitting, kids and husband does me. Especially at dog friendly places such as Whitby, one of my favourites. Don't get me wrong I love all the other stuff but my hols need to be time I get over work as well as sight see and shows.
I didn't manage to get a uv umbrella in time but that's first on my list of things to have. We had to queue for a coach to take us back to the ship at Palma after a day in the sun and there was no shade in that area. Luckily I took mum, in her wheelchair and we sat in the shade until the sisters got to the front of the queue or I think that would of been too much. Beautiful place and I'm going to go back. Going back to Rome, Sorrento and Amalfi coast too. Brill holiday just too much in one week for my body, next time long weekends or a full week at one place at at time to look around at a slower pace.
I know it's my fault i should of rested more but it's hard when you pay Soooooo much and when you haven't seen these places before and I certainly wasn't missing the likes of Pompeii. At least I know if I'm careful I can tolerate the sun and although the ankles blew up like balloons there was no increase in joint pain, just the usual I get here. The muscles tightened more from all the walking, not sure why the arms where effected lol. And I feel happier about our next holiday, if I get fitter, it should help too.
So that caravan may get further than the Netherlands in the future, really fancy Lake Garda X
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If you're interested, the sun cream is called neoVIDERM, I did buy it in Greece so not sure if you can purchase it here, I guess on line would be best. Enjoy your holiday x
Sun Protective Clothing
Heat or sun causing more pain
holiday
Dry skin & sun cream 
I'm confused about the sun
