Newly diagnosed autoimmune- Trip suggestions?

Not quite the same thing, but my husband has just started treatment for leukaemia. We have to be really careful to avoid any kind of infection, and he is also often suffering from fatigue.
We decided that until the condition/treatment has stabilised, we were not going to fly.
We are fortunate in that we can take our car over into France (and thence the rest of Europe), so for our first holiday, we are going to Normandy.
France has good hospitals, and we can be home in less than 12 hours if necessary.

If you are happy for a long journey, how about Venice/Verona and Lake Garda. Easily done by train, and would answer everyone's requirements to some degree.

You should go. I will not go into detail on some pains I had for years, but it never stopped me from going anywhere. If you do not go, you are depriving yourself and your family of this trip. You deal with it. I am sorry for this to happen to you, but the truth is that you either go or you do not. You may not enjoy all of your trip. That is something that could happen anyway. In part we all have times traveling where the enjoyment level is sub par.
If you stay home, you will have the same problems on top of regret that you did not go. Plus, you will have less diversionary activities to help along the way. If you do not go it sets a precedent for any future travel and thus could,become a pattern and maybe your travel days are over. Do not let this deter you.
You should go.
Your trip is only 10-14 days. Surely you can last that long. And, you will.

Janet, I'm so sorry for your new diagnosis and the pain that you're going through. I'm responding as the spouse. My husband had heart disease for 35+ years that became worse and scarier with each year. Long story, but he received a heart transplant @ 5 years ago only to have the lymphoma he has flare up--lots of meds that drag him down! New and more drugs require time for your body and mood to adjust. I'm assuming that you're still adjusting, both physically and emotionally. He now has a better idea of how he's going to feel. When we take trips, I have to remind myself that we can't move at a pace that I'd like. Some days are a total wash and we simply spend time sitting in/outside cafes for breakfast, lunch and dinner (all different for a literal change of scenery). At other times, he stays in bed longer or has to nap.
He does indulge in his passion of fly fishing. It is balm for his soul. It is exhausting for him, though, and because of that he has to end earlier than he'd like, take longer breaks, etc. Being chronically ill is also depressing.

You seem to be concerned about the enjoyment of your family (naturally!) Can you let them take on that responsibility for themselves? Have you thought about somewhere else other than Europe? How about the islands, such as the Bahamas? (I know October is hurricane season, so. . .) Other island groups? Mallorca? Check out timeanddate.com for accurate past weather in detail.

In December 2023, we took our sons, daughter-in-law and grandsons to Costa Rica. On my husband's "slow days" they had plenty to do while we did our thing, so he wasn't concerned about being the albatross. Unfortunately, CR in October is during their rainy season. But, there are options!
We are heading back to my beloved Paris at the end of September (my husband indulges me), but he already has the months of May and half of June scheduled for himself for fly fishing. We've had a long history of learning how to adjust, but adjustment has happened.

Sorry to hear about the health problems. My wife and I spent a month in Malaga taking it easy (and Spanish classes). Big enough town that there is always something going on. Lovely walks by the sea. Good transportation to other places. Great weather. Not as touristy as say Marbella. And there are few good local sites.

Best of luck.

Hi Janet. I love your bio by the way - "creaky old buildings" ;-)

I'm not sure where you have already been, but the Andalusia region of Spain sounds like it could work for what you're looking for, and the weather should be nice in October. Pleasant towns for strolling/sitting while lots to do to entertain your family (although, I agree with Lindy - you're not responsible for the enjoyment of everyone on your trip. Believe me, I get it, and am just starting to learn this for myself). Seville is a nice city where you could happily sit in a square or at a cafe and your family could walk around or visit sites.

My trip report for ideas: https://community.ricksteves.com/travel-forum/trip-reports/trip-report-spain-november-2023

Janet, so sorry this is happening to you. For what it’s worth, my opinion is Go on your trip. It may not be the trip you hoped for but you shouldn’t have regrets, only good memories.
Have you thought about Paris? There is a lot for your family and you to do and see in city and surrounding area. Transportation options are good and easy. On days you don’t feel well, there are parks and cafes for you to sit and people watch then easily return to your hotel for a nap.

My wife has been going through this. She was diagnosed shortly after shoulder surgery. The surgery and recovery were fine, but now she's struggling with the autoimmune issues. We're leaving for a 16-day trip April 1. She met with her rheumatologist yesterday and got a 15-day course of Prednisone to take on the trip. If you've ever taken Prednisone, you know that it can magically make everything feel better for a while. As a steroid, it shouldn't be taken long-term, but she's expecting/hoping that it will be a boost for the trip.

Meanwhile, I just got a shot this morning in my troublesome hip and hope it will also help for the trip and a couple of months beyond.

I hope you can find a way to deal with your issues. Besides the above, we plan for our few days in Paris to be more of an "enjoy the stroll" time rather than dashing all over to see sights. Moving on to the Belgium/Holland tour, which we expect to be one of the less strenuous tours.

Wishing you well, Janet!

Hello, I'm so sorry you are going through this, but happy that there is a diagnosis now and you can be treated and begin to feel better. That's a big thing with autoimmune diseases, so hold on to that. And you still have a few months to go, so it will give you time to heal some more (I started feeling a lot better 4-5 months after diagnosis, lifestyle change and medication). I think you should definitely stick to the plan and go on your trip. Yes, there will be some bad days, but it beats staying home feeling miserable. You will have to be a bit more strategic with your trip. I have traveled a few times when I was not feeling well and still undiagnosed, and these are some things that worked for me:
1. Get your family to help you with trip planning, packing and all the pre-departure chores. These need more work and energy than one realizes.
2. Destination - I have found that a large place like London works better for me as I can sit and people-watch. So for example in Osaka, my family went to visit the castle and when I felt well enough, I went and sat in Umeda station, which was a beehive of activity and enjoyable to watch.
3. Don't change bases too often. This also takes more energy than you think.
4. Don't feel guilty if you need to skip some activities.
5. Use things that help you when you are feeling really bad - hot water bottle? Get a massage?
6. Plan activities that can absorb last minute changes if possible, ie stay as flexible as possible.

I wish you all the very best and a wonderful 50th birthday.

I'll make a specific, quite a specific, suggestion which could also work elsewhere with minor changes.

I think it may work out well for both the family and you. I know it works well for my wife and me. We love it there.

I might consider getting a room at the Dorint Thermenhotel Freiburg near Freiburg im Breisgau in the southwest corner of Germany. Freiburg https://hotel-freiburg.dorint.com/en/

Guests there get free admission through a special door to the Keidel Mineral-Thermalbad Freiburg https://www.keideltherme.com/ which is our favourite spa, and we have tried many in several countries.

Get a car, possibly 2, and on your good days you can go with the family over to the Alsace Wine Route near Colmar in France, just across the Rhine, or up to Strasbourg (special driving rules), or you are very close to the Swiss border (right where the three countries join) with the fun of Basel and Swiss culture, maybe even going up to the Jura meadow where the herbs for Ricola cough drops are grown. That corner of Germany is generally the sunniest area in the country. Closer to home, Freiburg is a lovely place, Staufen nearby is too, you have the Black Forest just to the north and east, a nice part of the world.

On your bad days you can grab a towel and go and sit poolside or take advantage of the various healing waters and different treatments. If mobility is an issue they have all sorts of equipment for safely moving people into and out of the water too, and it is a great family relaxing place. In common with most German spas most of the facilities require a bathing suit, except for the saunas where for sanitary reasons they are forbidden.

I kind of think that sort of a place might meet most of your requirements.

The breakfasts at Dorints are to die for by the way, and they do pretty well the rest of the day too.

You won't be far from Stuttgart and its car connections for the young adults, and if any of you like Ritter Sport chocolate that is where their factory, exhibits, cafe, and store with firsts and seconds is.

Good suggestions already re: where to go. I just wanted to add encouragement to go on the trip. I've had an autoimmune disease for over a decade, and have successfully traveled internationally, both on our own and with a tour. Your family knows your situation, and with some planning can accommodate you if you need a day or afternoon off from being a tourist. Now that you have a diagnosis, and treatment has begun, you can realistically look forward to feeling much better by October. And that is a wonderful thing!

There are also some good threads on this forum about transporting meds, what is available at pharmacists depending on the country, what "just in case" things to pack, etc. You need something to look forward to, and a big trip, planned carefully, will be just the thing. Have fun!

just to add on a little to add to the location I suggested - the hotel and spa are in a forest honeycombed with walking paths, and there is a bus from Freiburg station which ends there.

I can't thank you all enough for the support and encouragement. I teared up reading the outpouring of kindness!

I was originally thinking London and Paris, but worried it would be too much. However, bus tours and boat tours mixed with people watching (and eating everything in Paris) sounds do-able. The spa in the forest of Germany sounds amazing! I'm looking at all of these suggestions. Thank you all so much <3

Lots of well wishes pouring your way!

A couple of years ago, my spouse had a bad ski accident that necessitated three subsequent surgeries. We had a month-long post-semi-retirement trip planned that Spring, and debated whether to cancel or go. In the end, the mental wellness provided by looking forward to the trip outweighed his concerns about what we would do while in France. And it was a wonderful trip. Yes, we had to scale back activities, and he had more naps (while I worked remotely), but we were there, in France! We did less walking, of course, but he still very much enjoyed people-watching at cafes and going out for long French meals.

When he took his cane (which he hated), which was mostly when we went to museums, he was treated very graciously and led to the front of the entrance lines. Many / all museums also provide wheelchairs and foldup cane chairs, which meant that he always had somewhere to rest. I have had back problems in the past, and have had to use the foldup cane/chairs, and even though my disability was invisible, I never had anyone question my request to use one.

When I was having my back problems (a successful major surgery has taken care of the problems for now), the way I looked at my days was that I had X amount of good time. Did I want to spend it skiing for two hours or sitting at home for eight hours? Did I want to spend it in a museum (usually yes) vs. some other way? Did I want to have to ask my husband to pull my bag vs. feeling well enough to sit at a cafe? Think about gauging how you feel like that - if you think you'll have 90 good minutes in a day, decide your most positive way, for you, to spend those minutes.

So, bottom line, my suggestion is to go wherever you want, and enjoy it in accordance with how your body is feeling. I would say, what you are thinking, a big city with lots to do close by might be an easier place. And when you need a rest, or are having an off day, you can do that in your hotel room (and your family can bring you whatever you desire, whether it's a glass of wine, a good book, a cup of tea, a bar of chocolate, etc.). I think it will add greatly to your mental health for you to take your big trip.

I'll add my two cents. Wherever you decide to go, get an apartment or villa instead of staying in a hotel. This way, you'll always have access to something to eat (that you don't have to eat in your bedroom), and you'll have somewhere to sit comfortably that is not your bed. Try to find one with a view of the sea or mountains or even a city street or square. This will allow you to be part of "the scene" even if you don't feel up to getting out. Also, if you're all staying together in a house or apartment, you will spend more time with your kids than if they were in separate a hotel room. It's nothing to do with health, but I used to go on an annual ski weekend with a large group of friends, even though I don't ski, because we always stayed in beautiful chalets with stunning mountain views, gas fireplaces and hot tubs.

Interplanet Janet; the name only brings a big smile thinking about Schoolhouse Rock/Science Rock; which means anyone who remembers it probably has ailments. I had to really work up my bravery for last year's trip to France/Belgium/Netherlands with a recent tough diagnosis. I did great. My husband injured his foot day 1 of our trip in Paris. So if you end up in wonderful Paris; be sure and download the G7 Paris taxi app. You can summons a car to the exact spot you stand. So you can go until you are tired; and then get the taxi. It made the first days our trip amazing!

Wherever you decide to go, have a marvelous time!

Hi Janet,
I'm sorry to hear about your recent diagnosis. I've had rheumatoid arthritis since age 3, so I know all about the fatigue and joint pain that comes along with it. I've lived internationally in 3 countries, and travel a lot. (Like a lot-a lot).

My best advice would be to go but not be afraid to sit things out. Have you thought about using any sort of assistive devices? I have occasionally traveled with a walking boot, wheelchair (that was after a surgery and we went to Prague with a group of friends, but I couldn't walk for more than about 10 minutes), and most commonly, a pair of crutches. I have wrist, but not hand, issues so that does make the crutches easier.

Nigel's suggestion for a spa town is a great one. There will be several options in Europe, but also consider Japan. There is a big onsen culture there, as well as good public transportation. Food for thought. I also find it easier to travel to either smaller towns, where it's easier to walk from point A to point B, or large cities with excellent public transportation. Look for a hotel that is right next to a bus/tram/subway line. The Edinburgh hop-on-hop-off bus tour saved our trip! Anyway, those are some ideas. The thing about autoimmune diseases is that you never know when you will feel really good, or really good, so I wouldn't let it stop your travels.

I also think Nigel's idea is a good one. I'll be staying close to Freiburg late September/early October.

I don't know about your finances but a mix of a spa town with a Mosel/Rhine cruise is an another idea.

Hi Janet,
First, I'm so sorry you are having to deal with this. Second, big kudos to you for not letting it stop you from traveling.

It's been many years since I did this trip, but I'd suggest the south of Spain, maybe half in Malaga or Marbella, and half in Cadiz or Jerez. I stayed in a beach front resort in Marbella in May the year that I went (not my first pick, but was staying with elderly relatives who wanted to "stay put"). It was easy to take day trips to Cordoba, Ronda/white hill towns, and Granada. You could join for those if you're feeling up to it; if not, your family would have things to do.

I'm not sure if Seville is too busy for what you're thinking, but I thought it was well worth a few days. I suggested Cadiz as it's on the ocean, and your family could day-trip to Seville, but if you feel like you'd be up to it, I'd probably just go ahead and stay there.

Best of luck!

I was diagnosed with an autoimmune disease two weeks before we went to Germany a couple years ago and we happened to have spent over a week in Freiburg. We did many of the things Nigel has suggested and it was so good. My husband and son at times went out and about while I napped at times and the days I felt good we spent on day trips to Colmar, the Wine Road, and Staufen. Good luck with your autoimmune disease. Its a struggle at times but we need to keep moving.

I'm looking for somewhere that I could relax if I need to and the rest of the fam can find something to do.

Okay, I will chime in.

You could get a hotel room on the Danube River front. Take in the views, the food, the absolute beauty of the environment. Even mid-October many of the outside cafes on the river are open .... with heaters and blankets for the really cold moments. https://dynamic-media-cdn.tripadvisor.com/media/photo-o/09/3e/f5/89/dunacorso-etterem.jpg?w=900&h=500&s=1

Maybe a river cruise: https://youtu.be/xG2naepLKN4?si=tnICAAXBYrtCzu4G Some have dinner, some just drinks, some entertainment.

Then the Opera: https://www.youtube.com/watch?v=lZUR-GJLAgY The story goes (doubt its true) that Emperor Franz Joseph said, sure Budapest can have an Opera House, but it cant be larger than the one in Vienna. Then he visited and was somewhat unhappy because he neglected to say it couldn’t be more beautiful than the one in Vienna … and it was.

Maybe a little vaudeville? https://youtu.be/PoZ-glcgNXk?si=SAMWyR-BhdPMt-Bl

Or a Broadway Musical (Hungarian style with English subtitles … mostly) https://youtu.be/utye25qWJeM?si=fTzH89fA8Ezx_4lj

Maybe with a daily trip to one of the bath houses the city is famous for. https://www.spasbudapest.com/baths

Dont know your budget, but there are some splendid hotels and for what you get, good prices. This one, the Matild Palace is also home to a Michelin restaurant by Wolfgang Puck. https://matildpalacebudapest.eu/wp-content/uploads/2023/03/matild-cafe-scaled.jpg and Puck’s place: https://youtu.be/Sd0mdjKZCbo?si=ECZ7Iq-J05A3fbEm

Oh, the family? That’s a much longer post. Its an easy 5 full day stop for history, beauty, architecture, culture ….. and some of us just never left and still stay busy.

Favorite Tourism Video https://youtu.be/1nd5AtZIrTk?feature=shared
Anthony Bourdain describing how visually pleasurable it is https://youtu.be/0nd9DuDGCz0?si=aa0c19KaJHEtabkX

Since you have special needs on this trip. If you need help, feel free to contact me.

Sorry to hear about your illness and I wish you well.

I see that Mr E suggested a river cruise. I was going to suggest an ocean cruise but I fully realize that not everyone enjoys cruising.

You could choose a smaller ship and or. a luxury line. When you are feeling poorly, you could rest by the pool or even stay in your cabin. There are many places to just relax including paid for spa services. And there is always great people watching.

In. port, you could stay on the ship if feeling poorly or go off ship if you feel up to it. Maybe you will be up to an excursion. And if not, the others might be able to take an excursion that works for them.

Just one more suggestion to consider.

You’ve received some wonderful ideas, Janet!

One of our adult daughters has an autoimmune disease she has dealt with for several years. She went with me to Italy three years ago. We went to the local restaurants- not the touristy food, and she felt surprisingly great during the entire trip. Her only issue was the flight bothered her legs for two days.

I hope this is a very special trip for you, and an exciting birthday celebration! Pause at times and memorize the moment to enjoy again later; I call them snapshots in time. : ).

bostonphil7, I was speaking of a evening cruise on the Danube, but I think you hit on a brilliant idea; a river cruise. Its a controlled environment with activity on board. Your room is right there if you need to rest. You get to see quite a lot along the way and you can control the effort of the day trips and there will be plenty for family members who want to spend more time on shore.

Either that or a single location where you can dig in and get very comfortable. But a location where you can have planning support so that you can really customize it and have input on things like waiting periods and line lengths and crowds and walking up or down stairs or hills. With some detailed planning and understanding you can work around all the inconveniences of the disabilities.

I would like to go back to Nigel's spa suggestion https://www.keideltherme.com/ because it is so different from what is usually suggested here. The use of spas could be new to North Americans, which Nigel may not know.

However, in most of Europe, a spa stay is not only for cosmetic purposes, but it is part of a wellness regime, prescribed by a doctor and reimbursed by our national health insurance. Private paying customers may be going for relaxation and cosmetic treatment, but for others it's considered part of a pain reduction or maintenance or healing regime. We have a cousin who is prescibed three weeks of "cure" (in French) every year for debilitating back trouble. I have a friend here in the south of France who is yearly prescribed four weeks at a spa 30 kilometers away right on the sea...near our favorite oyster beds. ;--))

So this may seem unusual to visitors, it's part of life, health, and relaxation for us.
It would be useful if Nigel could describe how one decides on a spa, what services to request if one is going without a doctor's prescription, and how the water therapy helps.

I've never been except to local hammans, and think Nigel has come up with a wonderful idea for you and your family. In fact, you could divide the time: 5 nights in the spa area and the rest elsewhere. Something for Mom's birthday and something for everyone.

I wish you and everyone who has shared about their or their family member's challenges healing and peace.

So sorry to hear about your diagnosis, Janet. I have had multiple sclerosis for many years and after my diagnosis we took our first trip to Europe and I thought for sure it would be my only one. But, now years later, to my surprise, we have gone many times. My fatigue is getting worse and worse, but we have learned to just work around it. I don't have any real advice because I think you should go wherever you want to go and then just adjust to your level of energy each day, or hour.

We always rent a car so we can drive up to our BnB or VRBO. My hubby can drop me off at a site and then park and join me. I like a comfortable place that I can hang out rest as needed, but also venture out by myself a bit. My family is understanding, as I'm sure yours is as well. Because I look fine, they can't see how I'm feeling, so it is important that I let them know when I'm down and not able.

If you had a home base, or multiple home bases, then they can go off on their own and you could hang out in whatever city or village you choose. Or you can go and they can drop you off back home if needed. And, if you are all out and about and your need to rest, just speak up, find a cafe, and sit and they can meet up with you when they are done. Just give some thought to what you think you might need and where you want to go, and then have good communication with them and give yourself some grace. I know how hard it is to be the one who can't do something and I feel like I'm holding others back, as well as missing out myself! Just try to let that feeling go as much as possilbe. As my hubby always says, "We'll take what God gives us".

Have a wonderful time and just go where you want!

I was in the same boat a few years ago. Adjusting to my new normal was a work in progress. I spoke with my provider before going on the trip so I could know what to be aware of in case I became ill. Besides joint pain and fatigue, the disease damaged my liver. We decided to travel where if I had a flare up, there would be medical facilities. Also, if need be, I wanted to get a nonstop flight to the states if needed. We did the Heart of France tour. There were two days I was not well and took it easy. My husband was able to continue activities. When we were in Paris on our own, we stayed at a location where we could walk to places. We planned one activity per day, with the thought if we did nothing it was ok. I almost canceled the trip but I was glad I could enjoy the trip. The fatigue can get better.

I'm going to add a suggestion that is a little bit different to the mix. What about Namibia? We did a safari in Namibia a few years ago, and we were surprised at how easy and non-strenuous it was, while at the same time being so fascinating and fun.

We booked a private safari through a guide someone on another forum recommended to me. He will take into account whether you want basic, mid-range, or luxury accommodations, and he will find savings for you by booking with lodges that are connected and, therefore, will give a multi-booking discount. (We chose mid-range, and, to us, the lodges were very luxurious.) A private safari can be tailored to your interests and stamina levels. You say how long you want to spend and what you want to see (wildlife, scenery, culture...). Our safari was 12 days, not counting flying to/from (we spent a couple of nights in Mainz on the way, since we had to fly through Frankfurt, anyway, and adjusted to the time ahead of the safari.) Our guide picked us up at the airport and dropped us off there at the end. It couldn't have been easier.

My husband often says it was like we had a daddy taking care of everything for us. We wanted to take a safari before we got too much older (we were in our late 50s), but we realized afterward that a safari is something we could handle when we are much older (in Namibia, where the roads are decent, anyhow). Most of the time is spent being driven, with regular stops/breaks.

We used Tracking Namibia Safaris for our trip http://trackingnamibia.com , in case you're interested.

Of course, you probably already know this, but you will want to mask on your flights and in airports and such, since the last thing you would need is to get sick on top of everything else. That would be another benefit of doing a private safari. You wouldn't be around a lot of other people most of the time (and when you are, it would usually be outdoors).

Anyway, just throwing that out there, in case that might appeal to you. We got the idea to go to Namibia because my brother went there to celebrate HIS 50th birthday. :)

October is the off-season in Portugal but weather is still warm compared to Northern Europe. No crowds and the prices are affordable.

You could rent a large 3 bedroom villa with a pool in the Algarve at a very affordable price. Make sure the property manager will allow you to turn on the heat for the pool if necessary. Try rentalvalley.com for villa rentals. Lagos is a very nice location. Rental cars are very affordable in Portugal; check out Zest.

Lagos is very pleasant. There are beaches and some easy boardwalk walks and scenic nature hikes, if you feel able. There are also boat cruises and water sports. There are lots of ocean side towns within easy driving distance. If you don't feel up to going out, you could hang at the villa and the pool while the family goes on a day trip. If you get bored, hungry or thirsty, you could catch a very cheap bolt (or uber) into town to shop or sit at a cafe.

I believe that the medical care is very affordable in Portugal if you do not have medical coverage.

Closest airport is Faro, but flights from Columbus, Ohio are a bit pricier or longer. It would be cheaper and faster to fly in and out of Lisbon. You could book end your stay in the Algarve with stays in Lisbon if you and your family would like to do some "big city" stuff.

Good luck.

Hello Janet,

I have posted on your discussion but have been following it as well.

As it turns out, I have been diagnosed with kidney failure which is a glitch in my travel plans as well as the rest of my life..

I am having diagnostic tests now and will next see my nephrologist early May to see where I stand.

For now, I have been placed on a very restrictive diet which includes no or very low sodium. All by itself, my diet is going to present. a problem when traveling especially since I love cruises and the buffet. .

But thinking ahead, I am concerned about eventually needing dialysis. There are now portable dialysis machines but ......

However Nigel mentioned something about a health and wellness spa in Germany. That gave me an idea about if my kidney disease progresses in the wrong direction, perhaps I can at least go somewhere to a spa for a week or so. Still traveling some hopefully to a beautiful place that has things to do. Maybe get some good information about my kidneys and kidney disease. Meet others in a similar position.

Maybe I don't have to gve up traveling altogether.

After seeing my nephrologist in May, I might begin a discussion about asking for health and wellness spas.

Just wanted to let you know how valuable I found your post.