Holiday advice please

Hi, im after any advice on going abroad.

Im off on a cruise leaving Southampton and flying home. I’m not a confident traveller - not going abroad very often and i’ve never been on a cruise, and also i’ve never gone away since diagnoses/medication/got worse (i’ve been diagnosed with SPMS)

Now i’ve got to take medication with me, FES, Crutches, scooter, deal with fatigue along with everything eles.

I dont want MS to impact on the others holiday. I went to a county show the other day with my scooter (i’m only just getting my head around using it - and I hate it!) and I was back in the car by 2.30 knackered and I still wasn’t back to myself 4 days later…and that was only1 day out! what am I gonna be like after 2 weeks?

I’m dreading the holiday in away…but I really want to be looking forward to it.

I’m going with family and they will look after me,but I dont want them to say to anyone…we didn’t do this/that because I wasn’t upto it

Ive booked assistance at the airport and taxi to and from home - I’m not sure what eles I can do to make the holiday go smoothly - anu advice is welcolme.

Many thanks, Ali

Cruise is ideal, where are you flying from? Only ever done the sailing bit, flew to NY ,sailed back but was much better then pre wheelchair. Loads to do on a cruise! I am excited for you!You seem to
have it covered expect to put some weight on, too much food avilable! Get a good rest before the airport and enjoy it😁

Thankyou for the reply. We sail from Southampton and fly back from Iceland to Heathrow

They can’t usually do enough for.you, don’t feel embarass!ed,lots of wheelchairs/scooters on board helps when they get to know a bit about ms,helps the next person!

Its more about when I’m off the ship that I’m concerned about, and not holding the others back because I can’t keep up

I’m off on another cruise in a couple of weeks, though mine starts and finishes at Southampton and no flying. Cruising is something I’ve come to since MS and since wheelchair for that matter.

I can walk with a stick in short distances - can be in each burst less than 50m realistically though can be 100m on a good day, places to sit down if needs be and the distance reduces each time I get up until I’m resting more than moving and fatigue sets in. Are you at a similar level?

These ships can be over 300m long, so I treat my electric chair like a car - go the long distances then hop out when I’ve reached my destination and use my stick to walk to restaurant table or nip out to the loo. I presume you’ve booked an accessible cabin? Wider door so you can roll straight in because a standard door necessitates folding chair up and lugging it sideways down the corridor from the door, past the bathroom to the main area. The wet-room is good too, with walk-in shower and height adjustable sink.

My next one will be my 4th cruise in 2 years. First with my wife, second with wife, kids (11-27) & Dad (91) and last time with just my Dad. This time, again with Dad only, he too will have an electric chair too as last time he found it too hard keeping up with me in my chair. He’s amazing for his age but finally starting to slow down. So we’ll be able to zoom around together!

In the 3 times I’ve cruised so far, I’ve only been ashore once! It’s not obligatory to go ashore and the excursion prices tend to be extortionate. There’s always plenty to do on board, even on shore days, so don’t feel like you have to get off - ever!

Worth noting that most of the excursion packages describe the level of activity and in some cases there’s an accessible version of excursions. Pick wisely and talk to tour staff before you book about suitability. Many of the excursions will need to be booked well in advance due to demand and accessible places can be limited.

Feel free to message me if you have any specific questions.
Graeme

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Shore visits might be well within your range or they might be a bit gruelling. The thing is that you can take them or leave them alone. If you find they’re a bit much, never mind: nothing wrong with cheerfully waving off your family as they go ashore for an adventure, leaving you to relax and enjoy the pleasure and luxury of being on board. The secret is not to see that as a failure if it happens, but as a sensible and enjoyable way of everybody having a nice time. Don’t let it be an ordeal.

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Thankyou for all the replies, Graeme - you sound like you love your cruises, hope you enjoy your next one.

You are both right in saying there is no shame in admitting you its too much and letting the others go off without me - but I will feel like a failure and letting them down and I know they will be worried about me and so not enjoy the trip as much.

I no there is nothing for it but to manage my energy levels and pace myself - but I just wish there was a magic pill or a delay button so I could prevent or delay the fatigue until I got back to the ship or home from holiday

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It seems to me that well-meaning nearest and dearest can project their own wishes onto us and forget to think about what makes us feel secure, fulfilled and happy. And then we can’t meet their expectations and it’s: ‘But we went to all this trouble for you!’ Of course I’m doing my own projecting here and probably way off beam, in which case please excuse me, but if there is even a whiff of that going on, you just need to put up your BS guard, do what’s right for you and don’t take any nonsense.

Of course we are also capable of projecting our own expectations onto others, fearing THEIR feelings of let-down and disappointment even though those fears are ours alone! That one’s my specialty. :grinning:

I’ve found it really interesting to read some of the responses to this question, as me and my hubby no longer travel, I’ve had SPMS for about 13yrs although diagnosed for 16yrs and really struggle with mobility, pain and fatigue, fatigue being the worst, so in a day don’t get much time to enjoy things, it makes me very sad to think our travelling days are over, I’d love for us to do a cruise, but feel in situation it would be a waste of money, but good luck to anyone who can.
Jean

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This is it exactly - its not what they expect, its what i expect them to expect!
its what I feel I should be able to do - what I want to expect of myself

When I first started to walk and wobble I can remember seeing people looking at me. I told a friend I was sure they thought I was drunk…her reply was to either be boring and use my crutch or carry and empty wine bottle around with me! - I went with the safe and boring option

My point is - i’ve no idea what those people thought - it was how i viewed myself

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Maybe off topic but me n my husband travel to Egypt on the 24 and I’m worried as not sure he can take his sativex with him as with everything I’ve read it says it’s illegal?? I’m so confused as it’s prescribed and needed for spasms ! All help happily needed xx

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I’m sure you’ve read the gov.uk advice. Contacting the Egyptian embassy in London might be a good idea. If I were you, I would not dream of travelling without cast-iron reassurance that what you’re carrying is legal, prescription or not, and that I had the kind of written assurance that would satisfy the airport guards in Egypt.

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