PMRGCAuk
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To vacation or not to vacation? Or when to go?

Me again. 3 weeks in since start of tx. Long before, PMR showed up, I had planned vacation for 2 weeks starting January 6th. I have been feeling wimpy lately and couldn't decide whether to go ahead with vacation or not. My fears are that I would get no pleasure out of that time off: It doesn't take much to feel exhausted by end of the afternoon on any given day and it is early on,what if something happens while I'm away? I have been with the same employer for more than a decade so presumably this isn't a pre-existing condition and could go anytime? I will have to check.

I know that I haven't got it in me to do a road trip right now. We could fly somewhere 'beachy' but on days when I am dragging myself around more, I don't know if the beach would make up for that. I like being in my home/comfort zone when not feeling well.

Yet, many of you travel far and wide. Sandy1947 even laid out her travel strategies which makes it clear its not all black and white or go/no go. Compromises can be made and fun had.

So with that in mind, I will reschedule my vacation (can't go as originally planned because I see a rhumatologist and my gp again). Any thoughts? I need to take my vacation weeks before May. Do I wait for most/all of my symptoms to subside? Do I go once I have titrated down from 15mg/day? Any other considerations? OR do I just go anytime and make the best of it.

Am I overly complicating this?

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Unless you really can't function, I see no reason not to go on vacation. Plan something that doesn't involve a lot of sight-seeing or other activities that require you to be on your feet more than you usually are. Build in at least a couple of rest periods before you leave, following your arrival, and before your departure. That will make the traveling easier. I often stay in hotels next to the airport when flying and my ultimate destination is more than an hour away, for example. That bit of rest and room service shores me up to enjoy the rest of the trip, and keeps me from being so dragged out when I get home.

Another thing I've been doing is simply eschewing luggage. I send my wardrobe ahead by FedEx, UPS or another carrier. No more dragging stuff through airports. Since the airline is going to charge you anyway, might as well not carry it at all. I stash a change of underwear, my medicine, a toothbrush and a comb in my purse. There are stores everywhere. I can buy whatever I need when I get there, or along the way.

Here's how I think about it. I love my home, but I really need to get out and about and see something different occasionally. To meet new people, try new foods, hear different music, see other art...and a change of scenery. These experiences are rejuvenating and invigorating. There's plenty of time left for sitting an watching the TV.

I can still get around. I'm not waiting until it gets harder.

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"I can still get around. I'm not waiting until it gets harder."

I hear you. Thanks.

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Hello,

Well, if it’s ok by your medics then yes but plan well and curb expectations. Think what you want from a holiday and go for the best fit. Try to put old holidays out of your mind and draw up wish list of requirements.

I went on a cruise in Aug when I was on 18mg and it was quite the best possible holiday for me because I was completely looked after, had impressive medical facilities below decks, could eat anything I wanted and could take or leave any activity/excursion without putting out my travelling companions. I also knew the food quality would be good which is essential because I’m a bit of a dicky tummy traveller at the best of times. I did though have a sleep every afternoon and that was non-negotiable even with myself; I just didn’t allow myself to over do it. At 40C in most places I only lasted a couple of hours anyway. I went out in the mornings only, rested in the afternoon and had a short but happy evening.

I didn’t have any down days from over doing it because I aimed low and scored 100%. The worst bit was dressing up for dinner looking like a chipmunk in the face with panda eyes with my hair having fallen out in chunks the week before. I had the choice of looking moth eaten or wearing a badly cut wig that I could not do anything about (long story). Anyway, after day 2 I was past caring and my search for a worse hair do than mine was amply rewarded.

Not sure when I’ll ever get back to my normal holiday of mountain hiking with back pack in all weathers. I don’t think they sherpas in the UK Lake District.

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"Try to put old holidays out of your mind and draw up wish list of requirements."

"Not sure when I’ll ever get back to my normal holiday of mountain hiking with back pack in all weathers."

Sometimes I seem to be wondering how to fit PMR into my life as I know/knew it. You are telling me to create a life around the restrictions of PMR and make the best of it.

I'm 58 and feel like I will be planning a vacation for a 90 year old. Frustrating but I certainly don't have to look at it that way. More homework for me to do. Thanks for your help.

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Yup, I’m 54 and had a fab holiday like a 90 year old. However, I’ve done 9 months of grieving for my old life in preparation. This bad bit isn’t forever and new things turn up in ways one can’t see. A serious illness 13 years ago put paid to my life before that so I’ve had some practice.

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Great advice. I love your easing up on yourself over time! Gentle is key with this illness.

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"Am I overly complicating this?"

I'd say you probably are. You may have to do a DIFFERENT holiday - we bought our appartment here originally to ski. That's gone but I live here and insted of skiing we drive to a restaurant alongside the piste for lunch and people-watch. We can go for a walk along fairly level cleared and gritted paths. In not-winter we go away with our RV - which is perfect because we decide what we feel up to doing. Breakfast is never difficult, nor lunch, and one absolute prerequisite is a nearby restaurant. Not that putting the grill on is hard work...

At the beginning of November we went to Malta in an appartment - just walked for a while in the morning - to a cafe overlooking the sea, had a drink and walked back. Sometimes had lunch out, sometimes dinner. Sometimes did a tour. The weather there was like spring here while here it was a bit chilly - the 3 weeks was very pleasant.

If you fly somewhere - request airport assistance. They pick you up at the desk and take you to the gate - or at the gate and take you to the taxi rank via the luggage carousel. No rushing for tight connections. They haul your luggage about and you don't have to walk miles in the airport. If it is a long way to the airport from home - go the day before, it's just another day of the holiday. Don't plan loads of tours you must turn up to - decide at the time what you want to do tomorrow, The change of place and scenery, better weather and different food is what a holiday is about. I have no time now for the sort of holiday where you come home for a rest!

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I understand exactly how you feel as I faced the same dilemma. I had a cruise booked for 12 days to the Canary Islands, Madeira, Lisbon and Vigo in June this year. I had a replacement hip operation in January and waited until I got my discharge from Hospital after 7 weeks before I booked it and paid in full. Then a few weeks after I got UTI infection and needed Antbiotics. Everything else seemed fine until one morning in May I couldn't move or lift my arms up and put up with it for a couple of days taking Paracetamol before going to Docs, having blood tests and having PMR diagnosed and resultant Steroids. I had never heard of this and didn't know what it was so quite concerned naturally. Hence my dilemma. Had no pain but holiday close. My Doctor assured me that I had no reason not to go and wouldn't be able to get a letter for cancellation due to this condition. So rather than lose £2000 plus I went ahead. Everything turned out good and in the end I was thankful I didn't cancel as it was a great holiday.

Hope this helps. Just make sure you have adequate health insurance to cover and Good Luck. Dorothy🏖

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Hi

I have been away more since having PMR then before

Mainly due to having a Grandson to visit

I manage a ferry ,train journey to London and navigating the underground before another train .

Go out most days with family while away and for three days have my Grandson all day .I must admit I get a bit panicky before traveling but can honestly say I feel so well rested while Im their I even plan pred reductions while away .

Im 62 and PMR is not going to dictate when I go away life's to short .

Plan you holiday and go

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Hi

I feel exactly the same ,two months ago I was down to 7mg and felt really well , then my husband had to have emergency back surgery and wether it was because of all the stress and hospital visiting I was in a lot of pain again .back up to 10 mg for a week ,now on 8 .

Lost my confidence to travel now ,as like you want the comfort of my own home if I’m not well.

Am I just being a whimp?

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No you’re not a wimp! You’ve had a fair amount of stress, but when you feel better you will get that confidence back. Three years ago, when I was a 7mg I travelled from UK to NZ alone. If you want to do something bad enough (wanted to see daughter & family) you can. At present on my second visit!

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No - not a wimp but unsure of the unknown. You do have to practice a bit!

I did trips to Japan and Australia with untreated PMR. Japan was worst - couldn't climb the steps in the 5 million temples the tour involved! Once I was put on pred it was so much easier. Two years ago we went to China - had I known what the tour involved I might not have booked it but I didn't. In the end it was fine - we didn't hare up and down the Wall like most people but we'd unexpectedly had a long walk up to it and it is STEEP! So we walked up a short distance, did a couple of obligatory pictures with and for Chinese visitors and then did the lower part. I don't feel I missed out. On other days I found a seat in the shade and just watched and most of the tours were slow enough for me to keep up quite happily and there was always a rest on the bus. Last year on our cruise up the west coast from Vancouver we went ashore at each stop and walked around - but didn't book any of the extortionately priced excursions.

But before I did those I had been all sorts of places where I too wanted my room and bed when I felt bad. In Europe that is always fine as we have a campervan - my bed, and we can stay where we are. At home you have the security of not having to move - so when you do start doing things again, start with being in the same place for the whole time and have an easy journey there. Personally I think self-catering is better than a hotel where you are tied to specific meal times - even my husband can get breakfast and lunch! We eat out - no different to a hotel. And there are always delivery pizzas! If you become a regular at a hotel they will often bring food to your room even if they don't normally do so.

A basic rule is not to book too much - so if you do have to bale out you don't lose anything. If you go last minute you don't have time to worry about things and you only go if you are feeling well!!

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No, not a wimp.

Given our personal circumstances, I believe we are all affected by PMR differently. As it waxes and wanes, new challenges appear, or relief sets in. So, the anxiety of change and the potentially new limitations, I'm guessing (newbie here), can create a roller coaster of emotion. And for a moment, anyway, stifle our desire to push boundaries. You know best what is best for you at this time. Listen to your instincts and your body.

I believe the take away message from this thread is to grieve the loss of function, livelihood, whatever and to not forget to move on. There is life, a good life, despite PMR. We just need to challenge ourselves, when the time is right for us, and make the best of it.

There are lots of amazing people here to show us the way.

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Hi MF-A,

think you maybe are anticipating problems where there needn’t be any.

Life with PMR does go on, just in the slow lane for a while!

You need to think things through before you decide where/what to do - what can you do? what can’t you do?

Road trip probably not good idea. Too much travelling is an energy sapper. As PMRPro says request Special Assistance - whether that be flying, cruising or train travel, I felt a bit of a fraud first time, but not any more - makes life so much easier!

As others have said, roughly plan your days, so that you can rest as and when necessary. You don’t have to dash around everyday. Sitting and watching the world go by is one of my favourite occupations these days! Especially if accompanied by a coffee or a glass of wine.

As I said to ManchesterLady I travelled from UK to New Zealand three years ago when I was at 7mg ( I know that’s a lot lower than you) but it’s also a lot further, and everything was fine!

Go for it. Remember to take extra tablets should you need them, and most of all, enjoy.. ..

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At the end of the day it's about pacing yourself whether at home or on vacation. I always rest post lunch for an hour or two so I can enjoy evening. I always have breakfast and return to bed so that I can have an activity or two before lunch.

It's hard when you want to join in activities but I would rather do one I get full enjoyment of rather than 3 that exhaust me to point of irritability and then knock me off my feet.

If i know rests are built into my schedule I enjoy activities more. I am sure just a change of scenery will be lovely. Hope you find destination that suits.

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I understand why you are sucking your thumb, rubbing your blankie and wanting to stay home in familiar surroundings. We have all been there...mourning our life before PMR. Once you go on your first trip, you will be a Pro! Jump into the water with your eyes open and you will be a champion swimmer. Hard to believe, your confidence will return.

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By this time in the thread Movingforward_always you are probably packing your bags and raring to go with all this encouragement. Here's a little more. YOU can roll with this disease... for me... Grandkids are here. I bowled yesterday. (instead of ice skating) Of course I can barely use my right hand today but what a great time it was! I slept 3 hours afterwards and today I am ready to "mini-golf" (instead of skiing). Planning trip to Alaska in another month. (I just can't get enough of the cold. (Sandy1947 ) and will use all the above advice for travel prep. Good luck! keep us posted!

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Highly recommend cruise. Everything is done for you, you go can go at your own pace, stay on board or if having a good day go on shore, sleep and rest when you want. Luxury! Highly recommend Azamara, though a bit pricey, well worth it. Reinforce if flying book disability support prior to arrival. This too was luxury!!!!

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No you're not!

It's 4 years since I was diagnosed with GCA and subsequently PMR. We used to travel to Australia every two years prior but was told not to fly long haul until the 50mg Prednisolone was lower. As I subsequently got cancer we haven't been to oz since but have definitely not ruled it out permanently. I only flew for the first time a year ago and that was forced - my son now comes over to us for Christmas in the UK from oz and wanted me to go everywhere with them - included two teenage granddaughters, 15 & 18, so as I never say no to them I went along. We started by touring London and all that entails. managed well considering, but did have to pace myself which they understood and I survived. We then travelled up to Yorkshire for Christmas to see number one son and family - what a journey (from Essex where I now live) - but again made it - but like you could not wait to get to my home comforts. THEN the girls wanted to go to BARCELONA, well they were excited to be in Europe weren't they and the eldest wanted a TATTOO (by someone she followed online!! this was all planned and that's another story). I was in shock and scared to death - but they cajoled me into it saying 'you'll be alright' even my husband, who I care for, said to go as a change of scenery would do me good. By now I HAD to believe what everyone was saying but it was sooo hard - I felt like I was going in for surgery or something - ridiculous when I look back.

However all was arranged, number 3 son at home looking after dad, and off we went. I was absolutely okay, not a long flight though. The WORST thing was not requesting airport assistance, which I always get for my husband, but for me - I don't consider myself in need of - that's for the more seriously needy! WELL we nearly missed our boarding - didn't realise our gate was soooo far away and I nearly couldn't put one foot in front of the other and needless to say we were the LAST on, and everyone looking as you get on. I wanted to say - yeah if you had what I had you wouldn't be looking like that!!!

By that evening I was in a right 2 'n' 8, as they say in Yorkshire where I'm originally from, I just couldn't get ready to go out to dinner with them, I felt flu like and awful - so got a hot bath and went to bed. Basically I was exhausted, blamed the rush to the boarding gate! After resting I felt much better the next day.

Then in August '17 number 3 son wanted me and dad to join them on a no-fly cruise, he's done them many times and told me how it worked. I agree with SnazzyD - she tells it exactly as I found it (we obviously went) I felt exhilarated and thoroughly enjoyed it. As PMRpro says don't book the shore excursions until last minute, does save the anguish. Plus if you can't go you don't waste money - my husband fell out of bed on the third day of the cruise and was more wheelchair bound for the rest of it - he couldn't even transfer to eat at the dinner table. the cruise staff (and my family) saved the day. Without our cabin assistance we would have been cabin bound no question. We had shore excursions booked and my husband couldn't go - but I was able to go ashore eventually but only because of the cabin assistance (and my husband agreeing!) It was certainly worth paying for the 5* trip. We did lose hubbies excursion money as he was not cabin bound - he could leave the cabin in wheelchair - if he'd had the runs that would have counted as would have been quarantined! Useful to know!

The theme, as I see from other replies, is not to stay at home but to think about you and what/how you need to plan your vacation. Get that airport/cruise assistance EVERYTIME and go for it. I could not have lived with myself if I hadn't joined in with my family - all I told myself was I could rest when they went home. I now don't think that way anymore - and planning makes the days go quicker even though you still fell s..t cos that's not gonna alter - yet! I still yearn to go to oz mmmm!

Just been told oz son are coming over again this Christmas so the planning starts again now for me......and I am buzzing!

All the best and happy hols!

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