I’m sure this has been done before if so I’m sorry.
In a month or 2 I’m going with family to the beach. My first “big” vacation since my diagnosis actually first one since becoming ill. I’ve only been on weekend trips and such like. I’m kinda nervous about being that far from home. And worried that some days I won’t be up to much and they won’t understand all though when i talked to then they said its fine. I’m glad my husband is coming he will most def be a lot of help.
Any tips to help make sure things go smoothly?
Yippee! Vacations are good! I love to travel, and I remember the apprehension of “what if” when I was first diagnosed really well. My vacay tips for you:
- Plan a vacation where you have some control over how much or how little you do. That way, if you just can’t (walk, hike, dive … fill in the blank) you won’t spoil it for yourself and everyone with you. Beach vacation? Perfect! Hiking the Rockies? Maybe leave that for when you have a better idea of your limitations.
- Take all of your favourite remedies with you. Don’t spend your precious vacation time in a drug store looking for whatever.
- If you ever use (or might need) a cane or a crutch or a scooter, take it take it take it. My cane, crutches and my mobility scooter have transformed painful and difficult expeditions into pleasant journeys. People are SO NICE when they know that you need a bit of extra consideration. Really.
- Book assistance at the airport. Don’t tempt fate by thinking “oh, I can do the security line” or “I’ll make it to the gate”. No. Book a wheelchair in advance, enjoy the journey, and arrive ready to enjoy your vacation.
- Put all of your travel wardrobe on the bed. Now remove half. You will still have too much. LOL
Have fun!!!
Each time I travel I flare, no matter what. I don't travel much. I have learned to take Prednisone with me. Taking as little as 4mg / day during my trip can make the difference between lying in bed the whole time, and actually being able to do something.
Also, take more painkillers than you think you'll need. They might make the difference between going out and doing something and staying home.
Like Seenie said, take whatever you might possibly use for mobility. I bring my own comforts: Thermacare pads, my own pillow, soft slippers, whatever makes a difference at home. I bring a few of my own regular foods that I know I can eat if my stomach goes haywire (certain brand of cheese and some crackers and light carbonated drinks).
All great ideas.
I like to make sure I have extra meds just in case I don't get back home when planned. I also take my own little snacks for comfort and so I can have a snack and take my meds if I need.
I just did my first little trip since diagnoses too. It was short, which was good. It helps me ease into things :)
Ooooh...the beach!!!
Such great suggestions!
If you're driving, make frequent stops to get out of the car, stretch, and walk around.
Bring good books, sudoku, knitting, and/or whatever else you find entertaining that you can do while lounging.
Make it clear to others that your purpose for the vacation is BALANCE - finding the right balance between doing and being, which might be different each day.
Prioritize activities. Plan on doing the top two or three and accept anything else as a bonus.
When help is offered and you need it or it would be helpful, say YES. Say yes often to help.
When you are asked to do something and feel that it may make the difference between having fun and being exhausted, say no, or say maybe later.
Keep hydrated. Keep hydrated. Keep hydrated. (Not that I have problems with this myself and need to carry a water bottle with me to remind myself to, well, keep hydrated! Nope. Not at all..... Ok, maybe....)
I try to go to the beach every summer! Good for you! Enjoy!
I use two smaller suitcases with handles and wheels instead of one large one. Too many times a big one has caused me to fall. I use a back pack or messenger style purse to keep my hands free and my shoulders don't get sore. If you need a wheel chair let whoever is wheeling you know to wheel you up to what you are looking at straight on. At the Smithsonian my husband and son kept wheeling me up beside the exhibits and I would turn my neck. I didn't realize it at the time but the next day I could not move my head.
Have a great time! I have always found the beach helps me feel better! Enjoy!
Oh, my, Michael - YES! If you use a wheelchair be very careful with your neck! If you use a wheelchair while on vacation and don't usually use one, let someone push you instead of propelling yourself so your hands, arms, shoulders, etc. don't flare. If you'll be doing a lot of wheeling, but don't usually use a chair, get up every once in a while and walk - or put your stuff in the wheelchair and use it for support. Too much sitting can be bad, too.
Thank you guys sooo much for all the tips!!! We are going to be driving I think it’s like 8ish hours. I do use a cane when walking a lot and I plan on bringing it and my pops walker with a seat. (He doesn’t need it anymore) I think it will be better for me than a wheelchair. I do still want to walk but can sit when needed. 
but I’m going to have to make myself use it. Knowing me ill just end up taking the cane!
Because I have an issue with fatigue, I'm bringing some protein food with me on my vacation in Summer just in case I'm out and feeling tire - I'm hoping a protein bar will help. I'm also ordering a 12 inch foam roller to pack because I use it often to help with my hip and pack pain - it brings me instant long relief.
I always carry some of my meds in my purse, some water, and a protein bar. That way I have what I need on the spot if plans change if I'm out and about.
Frances said:
Because I have an issue with fatigue, I'm bringing some protein food with me on my vacation in Summer just in case I'm out and feeling tire - I'm hoping a protein bar will help. I'm also ordering a 12 inch foam roller to pack because I use it often to help with my hip and pack pain - it brings me instant long relief.
I always carry all my meds with me. I travelled within the last month, did take my cane and it was a God send. What I did not do and will be doing for my next travel (work and a tiny vacation thrown on the side) is use a wheelchair at the airport. I did the foolish… I can make the get no prob. I had all sorts of reasons: there are others who must need them more, what if I want to stop somewhere, do not want to be a bother etc. well came home and am now in a flare. Use the chair for the big airports.
I used to follow the be prepared principle and packed for every possibility, now I pack for reasonable possibilities. Sending something to laundry or doing laundry while away helps me cut down on amount packed so that I can always carry my bags if needed but they all roll. I take my best shoes for my feet, my compression gloves and some of my other make life easier tools. And…I now plan for a day on either side of travel minimum to rest before I start in to the good stuff. The day of rest helps me enjoy more and have more fun.
Before leaving the “base camp” for the day, I make sure I have my scheduled meds for the day in a mini pill organizer. I have been away from the room and had to rely on my rescue pain meds, becaus my regular meds were still back at the room. Then I have to play “cach up” with pain. I don’t know if you’ve ever had to do that but it can be tough.
Long strolls along the beach may be a thing of the past. On my last trip, I found it to be so rough on me. Also, let someone else carry everything. It’s hard enough to walk on sand, add PsA and 20 pounds of beach gear, and you migh be toast!
When in doubt, just take it easy. That’s what vacations ar for.