Planned trip next week - so anxious!

We are going from Maine USA to Las Vegas on Tuesday for 5 days. We planned this trip over a year ago, before the diagnosis... and, I ❤️LOVE ❤️ traveling... but this time I'm super nervous. What if I feel bad, and end up in bed in the hotel room? What if it's too much for me and I crash? I want my husband to have fun, he so rarely takes any time away... I don't want to ruin it for him! Furthermore, I feel kind of nervous because I am in the appeal process for my long term disability denial... travel is not forbidden, but it is frowned upon... like, if you are well enough to travel, why can't you work? I know that reasoning isn't correct, but it still makes me feel like I'm doing something secretive. It feels good that I can say that here. We spend so much time trying to prove we aren't frauds.... thanks for all the support. I swear, sometimes I dream about meeting PMR pro and Dorset lady!! And Benjamin , I can't remember his tag name... SOME DAY I am going to go to Europe, and more. On my bucket list. I've seen London once and Paris once... but I want so much more.. Scotland, Ireland 🇮🇪 Italy 🇮🇹 More of England and more of 🇫🇷 France, Sweden 🇸🇪... Also, New Zealand 🇳🇿 and Australia 🇦🇺. I've got my work cut out for me!!!! ✈️

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  • Wow, zacsmimi, sounds like so much fun! Don't worry about ruining your husbands trip...las Vegas is a 24 hour city, so there is always something to do. He can go down and play while you are in your room for a while if you need a rest! It's also pretty safe, especially if you are in your own hotel for the odd hours awake! Pace yourself and I think you'll be fine and have a great time. Where are you staying?

  • Share driving he does towns you do interstates.Lots of stops eat every 2hours ie fruit cheese my choice when travelling. Do you use a cane never leave hotel without was is Vegas 6years ago with hubby he used stick at the time people went out of their way to offer help

    As LJ said 24hour town I wanted to sit in diner window at 2/3am having coffee and cake did it greet fun

  • Hello Zacsmimi

    Try & get everything ready for your trip this week, packed if possible, then over the weekend you can take it easy. Don't go dashing around doing tasks that can wait until you return. Are you flying or as Olive says driving?

    Take a nap when you get there & pace yourself, make sure you take additional Prednisolone with you, always have some spare wherever you go.

    Your husband understands your condition so won't expect you to up & running around all day. I have my breakfast in bed everyday & do the same on holiday, however on the times we've been away with friends & l've felt 'obliged' to get up & join them for breakfast I've suffered, so l don't plan to do that again!

    We're off to Hong Kong next month with a flight of just over 12hours then after a couple of days we'll join the Queen Mary2 it's a very big undertaking, but it's our 40th Wedding Anniversary & l missed out on my 60th Birthday Cruise as l was having Chemo!

    I'll be all packed by the end of February, save Evening Dresses but they are all ready & bagged.

    PMR impacts on our lives greatly, l had to give up a job l loved as it was too demanding so l'm not giving up on Celebrating & seeing the World as best l can 🌎

    And, don't forget to come visit Wales, sorry we don't have a little emoji flag, yet!

    Best Wishes

    Enjoy your trip

    Mrs N 💅🏼

  • Hi Zacsmimi,

    As others have said, try and get as much packing etc done in advance, I find deciding what you want to take is more exhausting than the physical packing, but at least you can sit down to think!

    Make your journey as easy as you can, whatever way you do it, give yourself plenty of time so you aren't rushing, and ask for help if you need it! A walking stick is a good idea, it not only helps you, but as Olive says, others are usually more helpful.

    If you need to rest during the day whilst you're away, I'm sure your husband will still find plenty to occupy himself.

    Most of all, enjoy, and try and forget your PMR worries for a few days.

  • Also don't eat the peanuts if you fly they will give you fluid retention. Glad you are feeling so much better. I don't dream about visiting our advisors but talking with them on the phone.

  • We flew to Turkey soon after I started on pred. I was extremely stiff when we arrived. On return I tried to move around and stand and that was really helpful, I know the crew would rather you didn't but they were very understanding to me. Have a wonderful break and listen to your body. X

  • Are you flying? Since you are going from one side of the USA to the other for just 5 days I assume you are! Ask for airport assistance. It makes such a difference not having to walk and worry about connections and stuff. And you arrive feeling almost human - I flew Germany to Chicago and then on to Calgary this summer. I was worried - normally I'd have said to plan an overnight in Chicago but OH hadn't and we had to get through immigration and security again (you at least don't have that) at Chicago. So I requested airport assistance and it made a major difference. Even after 24 hours travelling I wasn't crashed. Big plus: you get priority boarding even in economy! No standing around which is what I find tiring.

    Don't plan things you can't get out of easily and think: "Could I do this at home?" If you couldn't - you are unlikely to be able to do it somewhere else. And never feel you HAVE to do something - on our China trip, if I felt tired I sat in a cafe/bar and had a drink or found a seat while the rest of the group did touristy things. I was able to do far more than I expected though.

    And really - it is possible to fly in a condition that no-one in their right mind would say you could still work! When I think of some of the people I've seen getting on planes...

  • Hi zacsmimi, a couple of thoughts for you. Go fearlessly into your vacation, assuming you will have a fantastic time! dont try to taper pred in the week or three before u leave. .... while you are traveling, slow down and smell the roses. Vegas is grown-up Disneyland, there are amazing shows, incredible casinos and people from all walks of life. Drink lots of water, eat healthy (most of the time). Hold hands with hubby and walk along looking up at the Phenomenal magic land in the desert! I'm envious up here in snow-bound northern Washington state. Jerri

  • You will be fine. I have just been to Reykjavik for the weekend, Venice before that (with schlepping of suitcase), etc and if you are tired you rest. I would say definitely make sure sure you have insurance for the USA. Bon voyage.

  • You sound so happy and positive in spite of being super nervous. Your worse case scenarios don't sound too disastrous. Maybe you should re- label nervous to excitement. I am sorry that the disability people guilt trip you so much.

    Just go go go, pace yourself rest in between outings. Have a fabulous if slightly more sedate, holiday. It will do you more good than harm.

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