I have a huge dilemma about a holiday, and you're the... - NRAS

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I have a huge dilemma about a holiday, and you're the people who would know...

Sailaway profile image
Sailaway

We have been asked to go to Florida where my 2 sisters and their families are renting a villa. One of the families lives in Bermuda, and I've yet to meet the youngest; the others live about 600 miles away and I've not seen them in a year.

However, we're very concerned about the effects making this effort will have on me, I can't walk any distance without a lot of pain, all my joints are affected, and I have constant inflammation from top to toe. We're also concerned I'll put a dampener on their holiday - they'd never say so, but I don't expect to be able to do much with them outside the villa.

I want to go because I want to see my family, but it might be a bad idea.

Can you give me a good idea of what it's like to have a long haul flight which would include a change, probably at New York or London? And can you tell me what kind of toll a trip of this sort can take on an RA sufferer, and how long it takes to get over?

By the way, I'm between medications so am only on Celebrex having failed a couple of anti-TNFs and Rituximab.

12 Replies
Hidden profile image
Hidden

Sailaway I really feel for you - your current situation sounds hellish. I've never done a long haul flight with RA so can't advise at all but for what it's worth I think this sounds like a trip not to be missed. I can't see how your sisters wouldn't want you to be there however poorly and imobile you are. These family things are about family - not simply about having fun. Everyone will rally round you and you can be the one who sits comfortably in the shade and watches all the fun - hopefully enjoying all the vitamin D and warmth too.

I live a long way from my sisters - they are both in London while I'm in Orkney and our parents are both dead now sadly. They are both profoundly deaf and I quite often have a year or two between seeing them. I do really miss them terribly and I know that, regardless of my state of health at any given time, they would want me to be at a shared family occasion if I possibly could. I think you should go and not try and be too unselfish. Life is for living - even if, possibly especially if it is currently full of uncertainty and pain.

I hope you can try another anti-tnf soon and this time you have success. Could you see your rheumy as a matter of urgency and ask for help getting to this family event in Florida perhaps? Tilda xx

hamble99b profile image
hamble99b in reply to Hidden

Tilda, have you tried skype? I'm wondering if it would be good enough for bsl.

sandra.

Hidden profile image
Hidden in reply to hamble99b

Yes we do use Skype sometimes - its such a bonus - as are all the newer means of communication. We whatsap most weeks too but that's harder with little iPhones and trying to sign. I was just trying to make the point that family matters more than playing beach ball or going on trips. Even if we need to rest up more often or opt out of trips there are the mealtimes and there's the banter, the laughter and all the other great things about being in the physical company of loved ones - especially when we are feeling down. I would hate Sailaway not to attend this because she thinks she might spoil it through her present poor health. Xxx

hamble99b profile image
hamble99b in reply to Hidden

oh I agree Tilda.

my mind just clicked onto the possibility for you of skype.

sandra.

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Hidden

Hi Sailaway

I was diagnosed with RA last year , two failed DMards and undertook a longhaul flight in March to Kansas. Filled me with dread a few weeks before, how on earth was I going to manage even to walk from each terminal through three airports and the interminable long queues in US customs. Well.... phone the airline, in tears, explained my situation, they were amazing. Arranged passenger assist at each airport, which meant I would have someone help me, wheelchair or buggy across the airports, and if I decided I did not require then I was free to make my own way. Was able to take my walking stick with me and even pre booked seats so I did not have to worry about where I was sitting.

The hardest part for me was admitting I needed help.....once I did everyone was amazing... so my advice, phone your airline and do not stress , enjoy your holiday, relax and you will be surprised at how well you feel when you make the return journey. I also asked for, and was offered, steroids for when I was away, in case I had a flare. Ask... And accept any help that comes your way

Have a wonderful holiday

Katie

I've booked disabled assistance and received help just as katie has.

[may I add on train travel & with multiple changes, here too.]

the main tourist sots are very disabled aware & you often queue jump too.

hire a wheelchair and don't worry about accepting help.

enjoy 8-)

sandra [the jealous!]

hamble99b profile image
hamble99b in reply to hamble99b

oops! sots=spots

Hello there, I was in a similar situation this year, bar seeing family members. My partner and I had booked a holiday to California, about an 11 hour flight. If it I hadn't had the support from all the wonderful people on this site I don't think I would have gone. I too have RA in every single joint so I can empathise with your thoughts about the journey you have planned. From the moment I got out of a cab at Heathrow to leaving the arrival building in Los Angeles I was cossetted all the way and all my paranoid fears disappeared. If you can alert the people behind your travels, airline, train operator they will be very helpful. You want to see your family so I am sure they will be very understanding and once you are there everything will be alright. I got to see my Golden Gate bridge something I never thought I would see so it was worth all the effort and it didn't take very long to accustomed to time zones and cultures. Please say that you will go because you can live off of golden memories for years.

Good luck and bon voyage!

I travelled to dar es salaam, about 11 hours some 10 years ago. To our daughters wedding. I think I was on anti tnf at the time, but wasn't very active. And in quite a bit of pain. And it was in the 30s so I suffered quite a bit. The flight was ok, all I can remember is my daughters friend who was talking almost all the way. I did suffer from the heat, there weren't the creature comforts you'd get in Florida, there were tiny lizards in the shower. But I'm a bit of a stoical person and if I've decided to do something I grit my teeth and say that I won't let RA rule my life. Being at my daughters wedding was important. We were the only members of the family there

I kept out of the sun. I had very loose fitting clothes. I had my partner to help and tried to get up every now and then to just move around. I don't think it did me any harm, and psychologically it was good as I proved I could do it. I have found that dry heat helps RA joints. But you should try to do what you really want. Xx

Hi Sailaway, I travelled to India last year for a friends son's Hindu wedding with trepidation but I am so glad I did. The flight was long but we did it in two bursts, I was very organised and chose flights and airlines that took off and landed at sensible times. I also made sure that I took regular painkillers so pain didn't become too great. It was hectic whilst there and we flew south for a holiday afterwards but I wouldn't have missed it for the world. Start planning now is my advice!!! X

Thanks everyone, I really appreciate your answers and they do give me a lot more confidence. Typically before we can plan there's a much more important thing to deal with - we just realised my husband's passport has expired! The application's in so we're hoping it'll be renewed soon.

So we've decided to wait until it arrives, see how things are and then take it from there - if the passport arrives and we can get the flight we'll be going to Florida unless something drastic happens. If the passport doesn't come we'll just have to visit my sisters separately - so we either go to Florida or Bermuda... :-)

sorry cant advice but i would think 1 you will get jet lag i get it 2 days after the wife for some reason 2 you would need leg space for yourself 3 DO0 NOT FORGET INSURANCE FOR THIS TRIP MIGHT BE COSTLY TELL THEM ALL AILMENTS AND SEE PRICE.

4 the airlines are good at getting you to palain etc verry good some airlines.

5/ JUST WRITE DOWN THE PROS AND CONS MAKE A LIST GOOD POINTS BAD POINTS IF THE LIST SHOWS MORE ON GOOD POINTS (THEN JUST DO IT)

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