We are going to Rome for 7 days next week for the first time. I'm told that the average person walks 25000 steps a day while there. My average is more like 4000. I am currently on 1mg pred and have been since early December. Last year I reduced to 1/2mg and went into a flare after a month, on the day of departure for our holiday and had to cancel it. So I'm rather wary.
Any tips please?
Hi, Broseley. You have to remember that you’re not average-you’re you! 🙂
Have a look at this for tips and encouragement (found in ‘Related Posts’) courtesy of Louisepenygraig:
healthunlocked.com/pmrgcauk...
Thank you, duly read. I do want to see the sights in Rome though, and I'm not the type to take a day off- that's more like hubby!
I was hoping that some folk in the know might have some tips for getting from A to B in Rome without walking too much, as there's enough walking when you get to the site you're visiting!
Let's be clear - if you can't do it at home, you won't do it anywhere else!!
How many of you are going? You might find this interesting - it isn't cheap but Rome is a holiday of a lifetime!!
mybesttour.com/tour/golf-ca...
This is about using public transport
carpediemtours.com/blog/get....
and of course - I think there are several Hop-on-Hop-off options
Wow, thanks, Pro, I was hoping you would have some good tips. That's really helpful. It's just the two of us by the way.
I thought the buggy tours were not bad value for a bigger group but just for 2 is another matter. The hop-on/off buses are often excellent value - if they really are on/pff as you desire! I found the one in Malta superb really to identify places I'd like to go back to.
Is your hotel central? They are usually mines of info for how to get to somewhere with public transport.
Yes, we're right next to the Vatican. We have prebooked an excursion on the first afternoon to the Colosseum, Palatine Hill and Forum.
Quite a hike round those places and a certain amount of up and down so be careful if you are on a tour to take the opportunity to sit when you can ( maybe take a folding seat?) or ask the group leader to cut the pace if necessary. Buses and the Metro in Rome are quite useable ( though beware pickpockets!) and will get you to most of the places you want to see without problem. If you buy a Roma card you'll get free transport and free or discounted entry into a number of the key sites. Feels expensive up front but saves a lot of money and stress overall and you can get one to cover different lengths of time so you don't need to get a 7 day card if you are only there for 4
Rome is fabulous. The juxtaposition of ancient and modern blew my mind. I went there whilst on 18mg about 5 months after diagnosis with GCA and when under 5mg when I was suffering from adrenal insufficiency. Yes, the risk of over doing it is high because you can just walk and walk but not notice it because you are too absorbed. You really need to watch yourself and be realistic. Pick where you really really want to go and build in proper rests. I had an afternoon nap whether I liked it or not.
Staying near the main sights saves a lot of shoe leather. As suggested open top, hop on hop off buses are an idea. I don’t like open transport that is low down, making you breathe neat exhaust fumes. If you want to look down on the main ruins I suggest the Pallatine Hill, stunning, but it is an amount of up but you can meander up. At least you won’t be going in the heat of the year like I had to do. Another energy waster is queueing for entry but I hope at this time of year it won’t be so bad. You can see which tickets or ticket bundles you can buy online. Watch for pickpockets, they are everywhere.
Thank you Snazzy. I have on my list of must sees the cat sanctuary Torre Argentina, having seen it on TV. Cats and Roman ruins - what a combination!
Currently it is raining - but next weeks is forecasting half-decent, sun and cloud and mid teens temps. Bit like a northern English summer on a good day!!!
Sounds good! Storms predicted here - again! Wind and rain. It'll be good to get away.
My cousins are here skiing further up the valley this week - after nearly 2 weeks of clear skies and sun, it clouded over from the south as they arrived (it always does) and snow is forecast next Tuesday - they always get snow!!!! At least - hope it will be snow and not rain!!! But I am looking at preparations to move back to Scotland and the weather forecast is SOOOO depressing!!!
Yet they had a better summer in Scotland last year than the rest of Britain!
You need to investigate and use public transport. It will be crowded and you need to be very careful of your belongings as Rome is well known for pickpockets. The Colosseum, Forum and Palatine Hill is a big trip which takes hours. I hope that you are staying somewhere central or somewhere with good public transport links. We were in Rome last year and made the mistake of staying a bit out of the centre and trying to walk to most places rather than using public transport. After a few days we properly found out about public transport and used it where we could rather than spending 20 to 25 minutes walking to our apartment at the beginning and end of a long day of sightseeing.
Yes , you do that amount of steps , and then some if you go out in the evening.I went before I had PMR , I had a watch on , I can vaguely remember doing 21000 to 36000 a day.
I've been in Winter and Summer it is loud and can be a bit dusty whatever season.
I'd definitely get my trip planning head on if I were you and work out exactly what you want to see and plan the routes around in little chunks .
The open top buses are worth it.
You can get tickets that last 24-48 hours to hop on and off at all the bigger sights and just see the things you don't want to go around from the ride.
I'd also suggest getting a wheelchair or mobility scooter there are a few companies with lots of models , my friend used one when she went.
Motion for Rent has good scooters , Vem have a large range and deliver to your hotel. stbascilicatours(??) is a disability assist tour that gets you easier access to the basilica, chapel and other big places.
If memory serves open bus stop N3 is closest to the Coliseum, but have a look online and print off easy to follow walking tour maps and work bus routes before you go, it save phaffing while you are there.
All the buses, airports and trains have mobility assistance but it is worth seeing if you can book everything before you go to make sure you have seats.
I'd have more restful days with indoor tours of places like galleries and buildings between outdoor ones. Many of the galleries have their own disability assist.
If there are specific cafes or restaurants you want to go to work out where they are and arrange a block of sightseeing near them.
Take lots of wipes and lots of water and lots of coffee and ice cream breaks.
Have a little water spray bottle to fill with water each day to spray your face , neck and ankles when you are warm or aching and a light scarf to dab off the excess.
If you don't decide on a wheelchair at least get a little folding stool or chair when you are there to sit whenever you can.
Have comfy shoes not fancy ones , even in the evening if you go out.
Have little healthy snacks and some mints with you.
You may need more electrolytes so even if you are usually eating less fruit at home, dried fruit and small bananas are a good option.
It might be tempting to eat like mad but I'd still suggest you eat smaller meals and lighter options because the added change in diet and potential heartburn of new food or eating on the go can add to your chance of feeling pain.
If you eat heartier eat those meals in the evening once you can just sit and put your feet up.
My friend also took noise cancelling headphones and put a relaxing music playlist and free walking tour guide talks
on her phone because it can be very noisy.
There's a website called Romewise that has an article on Disability and Assisted travel around Rome that might be useful. Look for tips on TripAdvisor too, especially for nice budget places to eat and drink so you can plan in which places to go to when you have lunch or a rest that are near the spot you visit on each given day.
You've got low with your Pred but if there is any chance the PMR is still active I'd suggest you increase it for the trip and a few days either side.
Make sure you pack slowly now and just rest the days before you go.
Make sure your companion knows when you want to stop you are stopping , but that you'd be willing to sit at a nice cafe while they continue.
Make sure your companion knows they will be carrying everything and doing any unpacking or packing.
Ask for extra pillows to raise your legs on each night to help reduce aching and neuropathy.
Take some Magnesium lotion with you ( BetterYou types are University tested) use it each evening to help with aching.
If you don't do anything else make sure you eat a raspberry ice cream at least once on your trip, you'll remember it for ever.
I can understand why you aren't feeling very confident, especially if you had to cancel last year , but try and relax about it . Remember, you can go to Rome but if you aren't up to chasing about like a blue bummed fly when you are there just enjoy chilling out at your hotel or a nice cafe or sitting in a lovely spot , it's meant to be a holiday after all and it isn't an opportunity missed but a city enjoyed it you don't tour yourself to death!
Have a lovely time , Bee
It's January Bee - like an average summer day in Scotland!!! Don't think electrolytes or needing to spray water on your face because you are hot will be too much of a problem!!! Though sunglasses and a sunhat if you sit at a cafe facing the sun would be handy!
I don't know , if it's chilly and your a bit wrapped up and doing a lot you still perspire , feel sticky and need more water and snacks. On normal summer's day in Scotland with all that activity I still found that stuff really useful to stop me feeling like poop in the evening!😆😆😆
I will grant you it is cool and humid this morning - but careful with the snacks in Rome, no sitting on a fountain or steps to eat something, You might get sent on your way by police with a flea in your ear!
We went to Rome in November last year. It was magnificent! I’ve got GCA not PMR but I upped my dose from 5 and a half to 10 for the 5 days we were there. We used taxis quite a bit as we were staying in the Trastavere area. We also used the hop on/off bus. Have a great time.
A lot of good advice already- I agree the hop on hop off buses are good and you can just stay on the bus if you’re getting tired. The Vatican itself will be a lot of steps and corridors so if possible set aside a day for that area and maybe get back to hotel for afternoon nap. The Colosseum and Roman Forum with a break for pizza in the middle(!)is another group of stuff to get through so that would be another day for me. After that I’d really think about picking a few sites eg area around Spanish steps and Trevi fountain for an ice cream or evening stroll/shopping. Try to keep to 12000 steps max a day if you can and don’t pressure yourself to go into lots of museums - you can always go back another time for part 2! Enjoy x
Rome sounds fab but pacing will be required. I find the hop-on-hop-off buses are a great way to do that. Take a rest on the bus, enjoy the views, then get off at a tourist/site and do the walking, grab a coffee (off the main track) and get back on the bus. If you don’t do this you could end up not just being tired but put back your recovery. I’ve done a lot of travel since I’ve had PMR and learned the hard way. Enjoy 😊
bit off topic as I don’t have PMR but have to pace myself for other reasons and cannot stand long due to leg injury. Anyway we bought from the big A online a lightweight folding stool that slings over your shoulder ( hubby’s shoulders) for about £25. It goes everywhere with us and is great for queue situations. As it folds and carries like a handbag I’ve never been asked to leave it behind in museums for example. If fits in a rucksack too. It’s been a life saver for me where ever we travel . Enjoy the trip
Could you PM me a link to it please, there's a lot on the big A and I want to get the right one!
Can go on the forum - bet you and I aren't the only ones interested!!!
amazon.co.uk/s?k=amazon+por...
Hope this works
Thank you, ordered!
Is that the telescopic ones? What a brilliant idea!!!
Ha - this is amazing, I almost bought one of these last year to use as a portable mounting block for the pony - finding it more and more challenging to get back on if I had to get off to do a difficult gate! I thought I could stand on it and then just about haul it up to take with me. It sounds as if I should still buy as would be useful anyway 👍
Thank you all. I will take all your advice on board, with the proviso that I don't drink coffee anymore (I've become gut intolerant to it, miss it like hell) and never eat ice cream as it's too painful on my teeth! Do they do tea in Rome? Otherwise it'll have to be cold drinks.
Hubby has some kind of undiagnosed issue that makes him very tired (more than me!) and breathless so I'm sure we will take plenty of rests. (He's had all the tests imaginable. He thinks it might be long covid).
We are lucky that we have a friend in Ancona who is spending a day with us one day, and we're going there on the train to visit him and spend one night there at a cocktail party!
Good call to up my pred. I realise I should've done that last year, before we went. And to pack early and rest beforehand. I think it was the packing that did for me last year. I've already printed out all the docs and got our passports and GHIC cards sorted. We don't go abroad very often - this is the first time in 7 years, so it is a bit stressful when you're not a hardened traveller.
Thanks again.
They do tea - but NOT British-style. They are likely to look at you as if you are crackers if you try to get them to bring you black tea with ordinary cold milk. It is made with not boiling water and gets bitter not stronger if you leave it longer than about 3 minutes max and milk is often hot! For me a tiny travel kettle is essential - you don't often get them in a hotel room in Europe though you might in Rome with so many foreigners. Though much more likely to be a coffee machine thing. Tetley t-bags (other brands ARE available) make the most acceptable reliable cuppa all over the world irrespective of the local water. I never travel without my stash and a sensible cup - Italian hotel cups are often espresso sized and even capuccino ones are small by our standards. You will get herbal teas. And lemon with black tea - refreshing but NOT a "cup of tea" when you are knackered. Hot chocolate in a cafe MAY come with a consistency that is more like a dessert and needs a spoon.
Don't miss out on gelato - perfectly possible to eat without it getting to your teeth: use a spoon, small portion straight onto your tongue and let it melt. Oh joy!!! A gelato you have to bite into is just plain wrong.
My "I'm in Italy" drink is Aperol spritz if you aren't driving. Bright orange but possibly an aquired taste - didn't take me long to acquire it.
Last time I was in Italy it was Venice in summer 1998. We drank water then discovered ice cold peach tea. The best thing ever for quenching your thirst!
Thanks, I'll pack some cups and tea bags.
I have a walking stick which has a little seat that can pop up which can be really handy to perch on for a rest or if you have to stand and queue. Not sure if you can still get them. Mine was passed down from my mother.
Thanks, we have one of those, but my legs are very short and I can't reach it to sit on unless I put it at about 45⁰!
You will want to walk around as there is so much to see and do. I suggest you have an espresso break half way through the morning. Eat a nice lunch (not too many carbs)(not a fast lunch) and then again have a break halfway through the afternoon. I find walking too slow is exhausting (as is too fast). Just take it easy - you are on holiday. Help the economy by having an espresso. Lucky you. I love Rome. Buon viaggio.
Thank you. Unfortunately I can't drink coffee! I'll find something else. Thanks for your good wishes.
Plenty of other choices. I love aqua frizzante. Even if you have to sit and rest and watch the world go buy is fantastic in Italy. We usually get up and go out early 8/9 am and go about our business (museums, churches, wanderings) and come back and stretch out at 5 or 6pm. Nap or read and then go eat supper later. Never one for night life. Love Rome.
Sounds lovely! Thanks!
Hi Broseley, very late to the party and you have had lots of excellent suggestions- the hop on/off buses are well worth while. There is a lot of walking in Rome and although you don’t drink coffee there are lots of cafes to rest and have a cake or pastry to recharge -look for the local workers using them. You are staying in a prestigious area which means expensive dining - we always asked at our hotel where they would advise eating- usually they have a cousin or other relative who owns a restaurant nearby that is very reasonable in price and excellent quality. Lots of Irish Bars for cheap and cheerful meals and alcohol too! Rapid service there so you aren’t missing out on sight seeing time. The Vatican is amazing but takes a long time to go around, though you shouldn’t have the crowds. We have never had any problems with crime/pick pockets but more touts trying to sell you rubbish- smile, don’t stop but again hopefully outwith the main tourist season there won’t be many. You probably will manage many more steps than at home if you take little breaks - St Peters is fabulous and even I managed back in 2018 and three years into PMR to go to the top via stairs and lift-(cheap too) personally I thought better than Sistine Chapel. Every where you turn is a delight in Rome- you will love it - I’m envious x
hi Broseley,
I have just had a holiday in the Bahamas. Long haul flight then activities planned for most days. I took 2.5 Pred the whole holiday although I had tapered to 2. I played a bit of tennis, walked and swam. My only difficulty was swimming especially in the sea. I struggled to get my arms and legs going. Take it as it comes like I did. We know our limitations. I am presently on 1.5 but can’t get lower.Have a lovely holiday and do what you can..
I walk approx 6000 steps a day
To holiday, or not to holiday ?
Should I expect to feel discomfort for a few days each time I reduce Pred ?
Christmas/Holiday Anxiety
Daily Napping Hours? 
Holiday Vaccinations
