My husband informed me this morning after church that he wants to take us all on a cruise next spring break. I wanted to cry. How can one get excited about this when you do not know how you will feel.
How do others plan for long range travel?
I hope to join my son in Italy in the fall. He is in college and doing a semester abroad in Florence and asked me to come visit, he is a good boy! He wants to travel to Vienna for Christmas with me (my husband doesn't travel) and I asked if we could stay until New Year's Eve and dance the Viennese Waltz at one of the balls they have and he agreed! Luckily both my son and I are dancers. I found a ball gown at Overstock that will pack well and is in my favorite shade of red. I have it hanging in my bedroom. Even if I am not well enough to go it has provided me with a wonderful day dream. Not bad for $99.00! I do my exercises in the pool so I am ready just in case! I say there is nothing wrong with hoping and who knows we might just make it!
I think most people plan a prednisone burst for travel. You can plan ahead with your doctor to see if there is anything else you can do, like extra pain meds, muscle relaxants, etc.
Is your husband in denial about your disease severity? Is there a possibility you could do something closer by for vacation instead? I'm sorry. Travel for me is something stressful and flare-inducing, and I really only travel by plane every 2-3 years because of my disease.
I plan for rest time. We go on a family vacation every summer (my kids will be 6 and 11 this summer). My husband is suggesting Washington D.C. for this summer which sounds great. For about 2 seconds. And then I think of all of the walking, no place to sit and rest, touring around, etc. But since our kids were very young, we have followed the same basic pattern. We have breakfast, and go do something. Then we come back, have lunch and downtime. We may go out again in the late afternoon, but everyone has had a break. For me it's often a nap, but that's just fine.
I never know how I'll feel either, although late summer seems to be an okay time for me. Spring is usually the worst, so I try to avoid major things this time of year. It sounds like a cruise could be fine. You don't know how you'll feel, but it could be a lot of fun. And there'll be a pool there and a hot tub. Ooh, see now I would just be looking forward to spending lots of time in the hot tub.
Travel is a piece of cake IF you plan ahead even flying. There isn't a better vacation (or easier) than cruising whether you are flaring or not. First things first. What cruise line and are you self booking or using a travel agent? FWIW we can have a lot of fun with this........ My nephew is a top executive for a major cruise line. We have hundreds of days cruising in every part of the world. There are several cruisers on these boards. You are close to several ports so pre and post cruise travel will be pretty easy. Heck you could even do Amtrak overnight. There a few ports of call, we can't come up between all of us private guides a drivers etc.
I'm so dang excited for you, its almost like I'm going.......
The most important thing to remember is that the booze is not free.... The most entertainment can be sitting by the pursers desk on the last night when folks have gotten their bar tab. There are however many ways to smuggle your own on. Scotch is exactly the same color as listerine.
Room service is free. There are better ways to spend a week than on longe chair in warl weather with 24 hour room service, but I can't think of many........
Stoney, your hotel can arrange for scooter rental for the week. Just do it. It will make a better trip for everyone. You will have abasket for the kids stuff, AND you will go to the head of the line in a lot of spots. Send a letter to your senator and or your congressman, and let himknow of your mobility issues ask if the kids can meet with him and if he can get you any tickets....... (especially for the white house) you will be amazedzed at what he will com up with. If the kids write and ask for info, they send some amazing stuff. Every office has a staffer that pretty much concerns themselves with making constituents visits memorable.
I am a firm believer in the you just plan it and take it as it comes. We are planning a trip to Hawaii next year. Who knows how I will feel a year from now? But I am not stopping my life because of this disease and havoc it often causes. I am also planning a trip to see my daughter in Georgia this August. I had a moment of oh no, what if I have a flare, but then I think so what! I need and want to see her so off I am going.
Live life to the fullest every day because you just never know!
I recently had a very good friend die from cancer, life is way too short to think of what ifs and not enjoy very day with your family. Ok, I will now get off of my soap box.
PSA is unpredictable at times and planning a trip can make you nervous. My advice would be to not to try any new treatments close to the date of the trip just in case you have a bad reaction. Make a list of everything you use to battle this disease. If you take medication make sure you have enough to get you through the trip. If you use a heating pad for swelling pack it. Don't let PSA ruin a great cruise. Don't let it win!!!
LUCKY YOU! No, you don’t know how you are going to feel then, but it doesn’t matter. You are going to feel that way, wherever you are. And as for me, I’d rather be on a cruise ship than feeling sorry for myself at home. I’ve often thought that a cruise ship is the ideal environment for getting well. Someone else cooks and cleans and makes your bed. And you have a magic bathroom: every time you come back to your cabin, the bathroom’s clean. Yippee!!! You eat whatever you fancy. You sleep whenever you want. If it’s a port day, and you’re not feeling up to anything energetic, stay put and enjoy the quiet ship and the amazing views of the port. A bit of gentle exercise? Go paddle in the pool, and then put your towel in the hamper when you’re finished. 
Do assemble all of the meds you could possibly need, and take them with you. You don’t want to be down in sick back looking for something you didn’t think you’d need. I don’t know how your mobility is, but if you can get your hands on a mobility scooter somehow, you will get added value from the cruise. You’ll be independent, and you’ll be able to go ashore with the rest of them. Cruise ships are amazingly accessible.
I think you will find the cruise liberating and therapeutic, whatever condition you’re in at the time. So enjoy the anticipation! Your DH sounds like a gem.
He is gem! I would not trade him in no matter what.
Seenie said:
LUCKY YOU! No, you don't know how you are going to feel then, but it doesn't matter. You are going to feel that way, wherever you are. And as for me, I'd rather be on a cruise ship than feeling sorry for myself at home. I've often thought that a cruise ship is the ideal environment for getting well. Someone else cooks and cleans and makes your bed. And you have a magic bathroom: every time you come back to your cabin, the bathroom's clean. Yippee!!! You eat whatever you fancy. You sleep whenever you want. If it's a port day, and you're not feeling up to anything energetic, stay put and enjoy the quiet ship and the amazing views of the port. A bit of gentle exercise? Go paddle in the pool, and then put your towel in the hamper when you're finished. :-)
Do assemble all of the meds you could possibly need, and take them with you. You don't want to be down in sick back looking for something you didn't think you'd need. I don't know how your mobility is, but if you can get your hands on a mobility scooter somehow, you will get added value from the cruise. You'll be independent, and you'll be able to go ashore with the rest of them. Cruise ships are amazingly accessible.
I think you will find the cruise liberating and therapeutic, whatever condition you're in at the time. So enjoy the anticipation! Your DH sounds like a gem.
An open mind and an understanding spouse ironically, we went on a cruise just before I really got sick, with what I would call my first official flare. It was so bad initially that the docs thought I might have been bitten by something when I was in port or contracted something on board. That was in 2008. We just finally took our next vacation and it was very different. Much more laid back. I set the pace for the week in the Keys. We weren’t able to be very adventurous but but we were just grateful that the drive didn’t put me down for the entire week. The second part was several days in Daytona Beach for bike week. Unfortunately I wasn’t not able to ride (I had to follow in the car) I was only able to walk Main St. For one evening, but I was able to go so that’s what I chose to concentrate on. We went with others so my husband had someone to enjoy the time with. It wasn’t perfect, but as long as your expectations are flexible and you have leave yourself open to experience things differently it can still be fun. My biggest tip, do not stress yourself out with plans and packing etc. otherwise you maybe inviting a flare. Pace yourself before you leave. Safe travels to you.
Thinking of going to LIVE on a cruise ship after reading this. Hope you have an amazing time!
Seenie said:
LUCKY YOU! No, you don't know how you are going to feel then, but it doesn't matter. You are going to feel that way, wherever you are. And as for me, I'd rather be on a cruise ship than feeling sorry for myself at home. I've often thought that a cruise ship is the ideal environment for getting well. Someone else cooks and cleans and makes your bed. And you have a magic bathroom: every time you come back to your cabin, the bathroom's clean. Yippee!!! You eat whatever you fancy. You sleep whenever you want. If it's a port day, and you're not feeling up to anything energetic, stay put and enjoy the quiet ship and the amazing views of the port. A bit of gentle exercise? Go paddle in the pool, and then put your towel in the hamper when you're finished. :-)
Do assemble all of the meds you could possibly need, and take them with you. You don't want to be down in sick back looking for something you didn't think you'd need. I don't know how your mobility is, but if you can get your hands on a mobility scooter somehow, you will get added value from the cruise. You'll be independent, and you'll be able to go ashore with the rest of them. Cruise ships are amazingly accessible.
I think you will find the cruise liberating and therapeutic, whatever condition you're in at the time. So enjoy the anticipation! Your DH sounds like a gem.
Oooh....a cruise. My first thought would also be - but I don't know how I'll feel, but I would definitely rather be mid-flare on a cruise than at home. Look into what the cruise offers - massages? hot tub? sauna? Make a list of the things you'll enjoy no matter what to help you put your mind at ease. :)