ME/CFS and MCO

[hipthehippo]

Hi - I'm really hoping you lovely Dibbers can offer some advice.

We're due to go at the end of August and I am newly diagnosed with ME. Although I'm tired all the time I am just about managing to hold down my job at the moment but it's becoming increasingly harder to do a 37.5hr week plus an hour each way travelling. One of my main issues is being on my feet/walking for some time. I plan on renting an ECV when we're there - I know there are differing views on this, but honestly, I'd be lucky to get to the Teacups if I had to walk.

I've seen reports recently about waiting times for immigration and it looks like the average time is around an hour. Our flight is the 1pm from Gatwick so will arrive in the thick of things and therefore I think possibly an hour is a conservative estimate. I won't be able to stand in a queue for an hour - I'm more than likely to pass out if I have to. Sitting on the floor is not an option as getting up and down will be too difficult and I don't think anyone would take kindly to me bum shuffling down the queue

Any suggestions of what I could do?

TIA

[disney332]

Ask your airline for assistance at your departure and arrival airport.

Disney332

[hipthehippo]

Thanks. I've never had to do this before and just assumed (yes, I know a** out of u and me) that it was only for wheelchair users and didn't realise. I know LGW have their hidden disabilities lanyard but wasn't sure what to do at the other end. I'll give VA a call. Thanks!

[disneydaft83]

I'm in exactly the same position. Diagnosed last November and walking or standing for long periods is a real problem. It really took the shine off things on our last trip because i ended up spending most afternoons in bed and had a quite scary morning in AK when I got to Africa and realised I couldn't walk back to the car! Husband wants us to take any help we can this year and hire a wheelchair in case I struggle but since I still work full time (with difficulty) and am not registered disabled, i feel a bit of a fraud. But i do want to get the most i can out of this trip. I'm going to ask VA special assistance for advice I think.

Virgin have not long launched a hidden disability bookmark which you can request or print out and stick in your passport and their staff have all had additional training.

Good luck and I hope you manage to make the most of your trip and have a fabulous time!

[hipthehippo]

Originally Posted by disneydaft83

I'm in exactly the same position. Diagnosed last November and walking or standing for long periods is a real problem. It really took the shine off things on our last trip because i ended up spending most afternoons in bed and had a quite scary morning in AK when I got to Africa and realised I couldn't walk back to the car! Husband wants us to take any help we can this year and hire a wheelchair in case I struggle but since I still work full time (with difficulty) and am not registered disabled, i feel a bit of a fraud. But i do want to get the most i can out of this trip. I'm going to ask VA special assistance for advice I think.

Virgin have not long launched a hidden disability bookmark which you can request or print out and stick in your passport and their staff have all had additional training.

Good luck and I hope you manage to make the most of your trip and have a fabulous time!

See more...

In some regards I was lucky when we went last year as I think I might just have been at the start of it and we were a group of 8 - usually it's just DD and myself - and the others are all long legged power walkers! I knew I wouldn't be able to keep up so I hired an ECV. It was delivered to the villa and sat in the back of the car except when we were going out. I didn't want a wheelchair as I didn't want someone to wear themselves out pushing me around (I'm definitely not a lightweight! ) and am also a bit of a control freak and wanted to be in charge of where I was going

There are some people who feel that it is better to walk so that you balance how your head thinks you feel against how you feel physically and that if you walk you won't be tempted to do too much. Personally, I feel that if I did that, I've just paid for a very expensive villa holiday as I won't be going very far!

You're not a fraud - it's a hidden disability which can give you good days and bad days. I think you need to be kind to yourself - you might be managing without a wheelchair/ECV here, but if you think it will help you enjoy your holiday more then go for it. Maybe you'll only need it on days when you're struggling. There are plenty of people in the parks that use them and no one bats an eye.

I'm not surprised about AK - I don't think there's a single bit of it that's flat!

I have heard about the bookmark and will print one of these, speak to Special Assistance and have also e-mailed Gatwick Hidden Disabilities team about their lanyard - just to find out - got the feeling all of it might be a bit of an overkill for me But better to be prepared as I seem to be getting gradually worse.

As we go in August, I'll let you know how I get on and if there's anything that might be of help.

[disneydaft83]

Thank you hipthehippo! I'm not exactly a lightweight either but my husband likes a challenge! My co-ordination is terrible so the thought of an ecv terrifies me slightly. I'd be worried about how many toddlers I'd smoosh. I'd hope not to have to use a wheelchair often, I like to walk as much as I can but it was so frustrating to have to abandon our afternoon or evening plans to watch Mickey mouse cartoons in repeat in the room!

I love AK but it does feel brutal at times. It's the lack of shade and covered places to sit. My favourite spot is on the ledge at the otters viewing window, under the fan.

I think I will just suck it up and take whatever help I can so that we can do all the things I missed out on last year.

Oh and what a beautiful dog you have!

[Gryff]

I have lupus and fibro and do sometimes have to use a chair or scooter around the parks
Tend to use the chair more if at the outlets
We'd never be able to spend a full day in the parks if I was having a flair up I do go out to the villa on my own and have has assistance at the airport all the way to the rental garage

First couple of times my reluctance to accept help definitely had a huge impact on everybody's holiday so now if I need help I ask and take it
If I'm using a chair at the parks in the evening I just say at the parking toll both that I have a chair they are really good at directing you to special parking

[Pluto76]

My daughter has CFS amongst other issues We travel with her own wheelchair but you should request special assistance and think about requesting a wheelchair at the airports.
Don't under estimate the amount of walking at the airports.
With special assistance you will be boarded first, usually last off but you and your family will be taken through priority lane at MCO.
Hope that helps x

[hipthehippo]

Originally Posted by disneydaft83

My co-ordination is terrible so the thought of an ecv terrifies me slightly. I'd be worried about how many toddlers I'd smoosh. I'd hope not to have to use a wheelchair often, I like to walk as much as I can but it was so frustrating to have to abandon our afternoon or evening plans to watch Mickey mouse cartoons in repeat in the room!

I love AK but it does feel brutal at times. It's the lack of shade and covered places to sit. My favourite spot is on the ledge at the otters viewing window, under the fan.

I think I will just suck it up and take whatever help I can so that we can do all the things I missed out on last year.

Oh and what a beautiful dog you have!

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DD has bad coordination in general, has hypermobility and has dyslexia so left and right are a bit of a problem. She used an ECV last year when she was having a bad day and actually did very well - she's refused for several years as she was too scared but found that it went better than she expected.

Might be worth considering that on the days you want to do afternoons/evenings to just have a chilled morning - maybe a late brunch before setting out?

Thank you - I love our dog but can no longer walk him so have had to get a dog walker I do miss the walks and really want to go to DogFest this year but am worried I'll get stuck somewhere and not be able to get back to the car.

[hipthehippo]

Originally Posted by Gryff

I have lupus and fibro and do sometimes have to use a chair or scooter around the parks
Tend to use the chair more if at the outlets
We'd never be able to spend a full day in the parks if I was having a flair up I do go out to the villa on my own and have has assistance at the airport all the way to the rental garage

First couple of times my reluctance to accept help definitely had a huge impact on everybody's holiday so now if I need help I ask and take it
If I'm using a chair at the parks in the evening I just say at the parking toll both that I have a chair they are really good at directing you to special parking

See more...

Thank you - I'm getting better at asking for help from family and work, but not so good with strangers

We found last year that they were really good at the parks with the special parking - especially as we had 2 cars for our party and only me with the ECV.