M.E and Flying/Holidaying

Mojisola

You've had a lot of optimistic posts - I'm going to put the other side.

You've got ME. Your symptoms are set off by the smallest things which leaves you ill for weeks after.

You're going on a long-haul flight but you don't like flying and you have major anxiety problems with using plane loos.

You're going to Florida but are sensitive to the sun and the heat.

You're going to be with your in-laws who don't understand ME and think you'll be better if you get out and about.

Is this really a good idea?

How long are you going to be away for? Will you have a realistic chance of recovering from the flight before it's time to come home?

Have you done anything recently that you could set as a standard? Have you been out for a reasonably busy day and how did you feel during and after?

Only you will know what you can tolerate but you don't sound fit enough to do a long flight from what you've said on here.

Torry_Quine

Those with ME will know what I mean when I say sometimes you just have to bite the bullet and do things even though there will be huge consequences. Emotional and psychological health aren't helped by doing nothing and can be helped by getting out there and doing things.

I know you mean well Mojisola but it isn't always straight forward.

Mojisola

Torry_Quine wrote: »

Those with ME will know what I mean when I say sometimes you just have to bite the bullet and do things even though there will be huge consequences. Emotional and psychological health aren't helped by doing nothing and can be helped by getting out there and doing things.

I know you mean well Mojisola but it isn't always straight forward.

Of course it isn't and only LadyMorticia knows whether she could cope with the holiday.

It's no good strangers telling her to go and it will be brilliant if she isn't even well enough normally to have a day trip out somewhere.

zzzLazyDaisy

LadyMorticia wrote: »

I use a stick so will take that. I'm not sure how to travel with it though?

You can get ones that fold up. I wouldn't go for the cheap ones that you sometimes see at M-way services as they can be a bit flimsy. But if you go to your local motability type shop, or even look on Amazon, for around £20 you can get a decent one that will fold up fine, and go in your handluggage when you are not using it, but be very sturdy when it is fully opened. For a bit more you can get fanct psychadelic ones or coloured ones - if you have to use a stick, you might as well make a statement! A tip, take some of those coloured elasticy hair thingy's - when its folded up just push a couple up the length to stop it unfolding (you are supposed to put the stick back in the plastic case it come in, but if you are anything like me, you'll lose or tear it in no time flat!)

xx

EDIT - don't worry about it being mistaken for a weapon - they'll run a thingumybob over it as a matter of course - they are used to people with sticks.

zzzLazyDaisy

Mojisola wrote: »

Of course it isn't and only LadyMorticia knows whether she could cope with the holiday. .

I agree, but I also agree with the other poster who said sometimes you have to bite the bullet. One thing I would say - OP you haven't said how long you are going for - but I wouldn't do Florida in less than two weeks, because I need at least two or three days down time when I first arrive anywhere, when I just need to sleep. Usually I sleep all day and just get up for the evening meal. It is the only way I can stave off serious payback.

Fortunately I stay with friends abroad who meet me at the airport and deliver me to my bedroom, knowing that it will be a few days before I am human - even their little girl knows I'm useless for the first few days.

Pacing is the key - and that starts well before you travel so you are in the best possible shape to cope. Think about how you would prepare for, say, a family wedding - then double it! Whatever, don;t make the mistake of running around like a headless chicken (okay a HC with ME!) shopping and packing only to arrive at the airport exhausted and stressed. Delegate and rest as much as possible.

Oldernotwiser

I really think that you need to get the insurance sorted out before committing to this trip. I think that you might find it prohibitively expensive and you shouldn't risk travelling to the States without good health insurance behind you.

pink_princess

Sounds a fab holiday LM:j

Go to the gp, get as much help as they can give. Then get OH standing outside the toilet, don't sneak him in;)

Agree with the insurance side. My DS12 needs special medical insurance but it's worth every penny. (peace of mind)

Also get the special board by wheelchair, why waste the energy you have trying to walk it? Just think you are creating employment

I hope you have a great time x:T

Mojisola

zzzLazyDaisy wrote: »

I agree, but I also agree with the other poster who said sometimes you have to bite the bullet.

But you can't run before you can walk without possible severe repercussions. It is often worth pushing yourself to enjoy a special occasion, knowing that you can rest up afterwards - almost everyone with ME will have done this - but you need to know your own limits.

LadyMorticia needs to compare what she is capable of now and judge just how much more tiring the trip is going to be. If she comes back and badly relapses or has to spend most of the holiday recovering from the outward journey, it may not be worth it and it won't be much fun for her OH either.

LadyMorticia

zzzLazyDaisy wrote: »

You can get ones that fold up. I wouldn't go for the cheap ones that you sometimes see at M-way services as they can be a bit flimsy. But if you go to your local motability type shop, or even look on Amazon, for around £20 you can get a decent one that will fold up fine, and go in your handluggage when you are not using it, but be very sturdy when it is fully opened. For a bit more you can get fanct psychadelic ones or coloured ones - if you have to use a stick, you might as well make a statement! A tip, take some of those coloured elasticy hair thingy's - when its folded up just push a couple up the length to stop it unfolding (you are supposed to put the stick back in the plastic case it come in, but if you are anything like me, you'll lose or tear it in no time flat!)

xx

EDIT - don't worry about it being mistaken for a weapon - they'll run a thingumybob over it as a matter of course - they are used to people with sticks.

I have a fold up one. It's very pretty - purple and flowery. I still have the plastic case.:eek: (surprised I haven't lost it yet!).
I wasn't sure if it would be allowed in hand luggage but now I know it is that's fine.

LadyMorticia

Thank you everyone for the replies.:) I've been checking in on the thread for most of the day but have had brain fog and didn't have the mental energy to reply.

I will definitely get some travel insurance and check about pre-existing conditions etc.

With regards to some of the posts about the negative side of things:

I completely understand what you're saying. I'm trying to weigh up the (possible) pros and the cons. This will probably be the last family holiday and I've wanted to go to Florida since I was a child.
I've talked to MIL and FIL about the wheelchair thing and they agree that it would be good. OH also said about hiring a wheelchair when we're out there to help too.
We're only going for 7 days which is the more worrying thing as it can take me that long to recover :eek: but OH really wants to go and if I don't then he won't.

I know it will be very hard and I really don't want another relapse but this is almost like a once in a lifetime opportunity. =/ I'm going to discuss it with my GP when I see her to see what her view on things are. I think it's good to get different perspectives of the situation.