in October it seemed like a good idea to book a holiday to Finland for my husband’s 50th birthday. We’re going next week and I’m in a complete state about it and don’t know what to do! I haven’t been on an aeroplane for 15 years and was never keen on flying anyway. I’m also really worried about getting ill while we’re away and ruining it for everyone. Everything’s really getting on top of me and exacerbating the MS, I wondered if anyone has any tips that can help me cope? We’re only going away for five days but we’ve saved up for a couple of years to be able to do this so I really don’t want to wreck it. My husband and the kids are brilliant so I know I’ll have proper support but any advice would be very very welcome!
I have always hated packing for a holiday and made a meal of it even when there was nothing the matter with me. Now that there is something the matter with me, I hate it even more because of all the boring extra stuff I need to think about/take/have available just in case because of the MS and the various associated infirmities. And of course even having to think about those things raises the anxiety levels about how bad things would need to be for you to actually use all these (chose any one of the grim paraphernalia of dealing with MS) or how would you cope of you turned out not to have packed enough of those (chose another).
But once I have finally done it, and know that the travel insurance is in place and aware of every miserable detail of my state of health, and I have talked me and my hiking poles through security and finally sit down in Departures with a G&T, the worries fall away and the holiday starts.
I hope it is the same for you. I know it is useless saying ‘plan, but don’t worry’, but that would be a great trick to pull off, wouldn’t it?
You might need to be a bit more specific about your worries.
For example, is it that you’re nervous about flying or is it more of a physical thing (i.e. if you’re quite disabled it’s getting about the airport, getting on the plane etc). Airports are pretty good about assistance for the disabled, you just need to have told your airline that you require disability assistance, e.g. getting around the airport, getting to the gate, getting on or off the plane, taking a wheelchair with you, etc.
When you say you’re worried about being ill while you’re away, is it a fatigue thing that you’re concerned about? In which case it’s a matter of a) pacing yourself and b) making sure you rest properly (ensure you take a couple of hours each afternoon to just stretch out on your bed). Or are there specific worries about becoming physically ill or incapacitated? Relapses (if you are RR) often take more than a few days to really kick in so you probably won’t have a relapse that ruins everything. But if you’re stressed, then that in itself can have a physical effect so you need to get your worries sorted out to reduce the stress.
If you’re bothered about not being able to do the walking around places while you’re away, but aren’t usually someone who uses walking aids / a wheelchair, you could think about getting (or hiring equipment) for your holiday so you can keep up with your family.
If you’re worried about your hotel facilities being suitable, phone and ask them, or your travel provider if you’ve bought a package.
Or if there are other issues that are worrying you, then tell us what you’re concerned about and someone on here is bound to have experienced similar and can help.
Thanks for your reply! I’m very nervous about flying, the kids have never flown but they’re totally fine about it! Last night I was tired and a bit shaky but I’d arranged to go out with a friend that I didn’t want to let down. By the time we got to the restaurant I was fatigued and shaking terribly, my lovely best friend called my husband to collect me. So I am worried that the stress and worry will wipe me out before we’ve even begun. I’m not usually like this at all.
I use an FES and I’ve got all the letters that go with that, just in case people are worried about someone with wires going down their leg! I know I’ll have to take it easy and the family are used to going at my pace. My husband has said that we’ll take each day as it goes and I’ll make sure I do rest.
To be honest writing all this down makes me realise that it’s all a vague stress rather than anything very specific. I just really want us to be able to enjoy it and not let anyone down.
Thanks Alison! We’ve always gone away in the UK so we’ve just had to chuck everything in the car and go. I have got a lot of lists and quite a lot of time this week. I’m hoping that once we’re there I’ll be OK but really want to stop being stressed now rather than it building up. I know that worrying about being worried is self-perpetuating!
Everyone says that having a drink helps but I can’t tolerate alcohol any more, bloody MS!
I would most certainly request wheelchair assistance even if you feel you dont need it. I find it cuts down on the waiting in queues, which can sometimes take hours to get through and also some airports have a long walk to the gate and flights of stairs at some, all of that can be very tiring. Hubby often pushes me through to departure lounge if they are busy and then the assistance staff take over to board the plane. They also board you first so you don’t get mown down in the rush. All your family can follow you through with the assistance staffl. I try and make life as easy for myself as possible even though people look in astonishment when I get up from the wheelchair and walk to get a newspaper. Who cares put yourself fist because it is you whom it effects.
I also try and spread the load for packing and do most of it a week before leaving clothes a little longer but never the day before.
As for being ill whilst away, well if it happens it happens but you have plenty of support around you. There is no reason it would dont stress over what ifs
At least it’s quite a short flight. That’ll help. Have the FES clinic advised you to use a wired footswitch rather than wireless for flying? (I’m thinking about the Odstock Pace system here as that’s the one I know.) People are quite often told to take off their shoes to get through security. So not having a wireless insole would be better. Plus, can you just about manage to stagger through if they make you take off your shoes? And think about what shoes you actually wear to travel in. Can you get them in and off easily?
Also, you currently manage walking with the FES, but you might want to think about getting assistance to the gate in the airport. Obviously it depends on the airport, but if it’s a big one (Gatwick, Heathrow and many others) the gate is a really long way from the terminal. And you don’t want to completely wear yourself out just walking the 10-15 minutes to the gate. If it’s a small airport (I’ve used Southampton which is titchy), then it’s not such a problem.
Travel is a strange thing, you plan and book and when it’s way off in the future, all you do is look forward to it. But once you’re within a few days, you start to worry about tiny little details. And that’s what causes the stress. And having had a night out that’s wiped you out, you then start panicking.
If you plan while you’re away to eat dinner relatively early, that might help. So you don’t add extra fatigue to your general tiredness.
And of course, getting home is lovely. Travel just makes you appreciate home all the more. Have a good time.
If you’re worry is about the flying think about whether you would have felt the same if you didn’t have ms? I’m not sure how long you’ve had ms diagnosed but i know I’ve only been diagnosed since December 2016 and if I’m feeling a bit rubbish or a bit tired I have to stop myself going “oh it’s the ms” and look at what I’ve actually been doing. Yes I’m tired but am I getting tired quicker -in which case probably the ms and I might need to adapt what I’m doing if not have to blame llifestyle. Is your stress more or less then before the ms? Was it ok last time? If yes what’s different this time that says it won’t be? If it wasn’t why wasn’t it? What would i do differently? I’m sure it will be fine - for a big trip like this i’d be worried about it all going alright even without the ms!
Be clear with your family when you get there as you will get there quickly, hardly time for a cup of tea onboard then you will be off again. Be clear about doing, if the first day is wonderful and you go and see things and enjoy, if on the second day you wake up feeling shattered, just say. When I go on holiday, I have to plan doing days then resting days as there is no other choice. This way even if it is just sitting for a morning reading, I recharge and am ready for another adventure.
Enjoy, chill, you have a lovely opportunity to see somewhere wonderful, with your family. Airplanes are airplanes, I hate them but I will get on one if it takes me somewhere brilliant. I can only fly with the safety belt done up and only get up for the loo. Then I strap it on again. I take warm socks to keep my feet comfy and in order not to get cold. I buy a lovely small handcream or something that smell superb before I go and I use it the day of travel. That way, when I get home every time I put it on I remember my trip.
I did grab hold of a man’s leg once when we took off, gripping it very hard. He laughed and asked me what plane I was coming back on! I had to apologise most sincerely.
Go forth, rack up some memories x Most important, just relax, if you get poorly you get poorly same as home. If you relax, enjoy, you might pay for it when you get home but you will be home then.
Definitely get airport assistance. You may feel fine on the day you’re flying or you may feel rotten. If you’ ve booked the assistance, either way, you’ll feel as good as you can be when you get to the plane. I’ve flown plenty over the last 5 years, and after being reluctant at first,now always use assistance and every time, it’s been excellent.
thanks your time,let everyone else get stressed,mind u when my family get stressed I get more stressed as I worry about them lol …get the assistance let them do the job they are paid for.2years ago I went to Greece as usual it’s a really relaxing place so when I get there first I have 2/3coffee,then bed as its only4 30 pm when we get to hotel so I sleep till 7 get up for dinner(early) I. Know.then I spend a couple of hours people watching on beach front then bed .that way I am going to have energy for next day enjoy.