ME/CFS Assistance

[Slore]

Excellent thank you. They’re such tiring days. It’s been a few years since we have been and I struggled then. It’s all about getting the best out of the experience and if I need assistance then so be it. I’ll take a look at the recommendations too. Thanks again!

[scottish mama]

I’ve got ME/CFS and Fibromyalgia and would ditto all the advice here

1. mobility scooter. I rent over there form the likes of Apple Scooter and get the ones which come apart to go into the boot, as they’re cheaper than from the parks and useful when you’re having a non park day. I don’t take my own one as I’ve always been a bit worried about it getting damaged en route.
2. Disabled badge- definitely apply for the red badge temporary disabled parking permit, which can be used all over Florida, is $15 (or was pre-covid).
3. Have pool days to recover.
4. Notify guest services (though they don’t always recognise ME or at least that’s been my experience over the past 20 years of going).


I’d also add to get special assistance with your airline and think of your worst day when answering their questions ie can you climb stairs/ how far can you walk. It’s amazing how far they think “just a short distance” is and most airports are HUGE! for us to walk. If you’re hiring a scooter in the US you can get a wheelchair or buggy in the airport to get you around.

I tend to go to the the parks later and for longer, having a long lie and leisurely start and take lots of rests during the day, followed by a couple of pool days afterwards. But then we don’t do all the parks as we know this is just too much for me. When staying onsite I’ve also let the family go off on their own for most of the day while I rest, then DH comes back for me later.

[scottish mama]

Ps I totally get where your coming from re getting a scooter at home. I’ve had ME since I was 28 and it took a long while to accept I need that extra help, and didn’t want to be classed as disabled. However, I look at my scooter as enabling me to conserve my energy for the activities I actually want to do eg it enables me to go for a walk with friends and enjoy a coffee with them, or go out for a meal or to the pub. It also lets me go onto town for shopping and saves my energy for actually being in the shop.

It is a mind shift and is very hard to do initially, especially when so young, but it does open up opportunities to still be involved on the days you’ve got reduced energy. My scooter, Betty, has been an absolute godsend as she enables me to do all the things above when I’m able to get out the house. She’s been my new legs and has definitely kept me sane.

Also, if you do rent in in Florida, I’d get one with the captain’s chair as these are by far the most comfortable.

[Slore]

Thank you for the advice, it really is so appreciated.

I have plenty of time before our trip so it gives me time to test things out. Whilst I have a good idea of my pacing I’ll know a lot more.

I’ve been approved for a Merlin RAP (their version of DAS) so I can test that out in a few weeks. It’s sad to hear your comments about the DAS pass though as that’s one thing I’m really hoping to get as I think it’ll make such a difference to my day as we don’t need to rush to the parks.

I’ve booked rest days and later starts so things will be at a much chilled pace.

We’ve got a universal premier hotel so express passes for the universal days too so again much less stress and waiting when can sit and chill somewhere cool.

[Jennywren]

Guest Services cannot ask for evidence of your disability due to the Americans with Disabilities Act, they have to take you at your word.

They don't give a DAS Card for named conditions, instead they will ask you why you are unable to queue as usual. So talk about your symptoms and how queueing in the heat will affect them, stress that it will severely curtail your visit otherwise.

Ask for a pass on your first visit for the duration of your stay otherwise you may have to ask at each park you visit which will significantly eat into your time.

When you go to guest services all members of your party will need to be with you so they can be added to the pass as well. They will usually add up to 6 members of your party to the pass.

Hope this helps.

Good luck with your Merlin trip.

[scottish mama]

Oh no, I didn’t mean to worry you!
Tbh it’s only happened a few times and I think I may have just had an awkward or misinformed person on the desk, as she was very sorry but adamant I couldn’t have one. I was so taken aback and embarrassed I just wanted to get out of there, so was just wanting to forewarn you so you could be ready to state your case/ stand your ground. Definitely ask, and do as Jennywren suggests, explaining fully the issues.

It’s good that you’ve got a trial run of the DAS with Merlin, and I’m sure you’ll love your trip to Florida. I’m an adrenaline junkie so I get my fix on the rollercoasters rather than hillwalking, climbing, mountain biking etc as in days of old.

[Mental Minnie]

Originally Posted by Slore

Thank you again for this, it’s so useful.

I’m going to do some research on mobility scooters but, on a personal level, it’s still tough for me to accept as when we go I’ll only be 30.

I definitely don’t cope in heat and we can only go in school holidays as teaching profession; so I’ll be looking at some cooling tips.

We don’t normally drive when on holiday as both like to take a rest from it but if worse comes to it Uber/Lyft will be our friends.

I’m so appreciative of all of this advice though so thank you so again. It’s helping putting my mind at ease!

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I'm also finding this very useful, so thank you. My last trip in 2017 I was just diagnosed with Fibromyalgia also have very swollen and painful arthritic knees and IBS which in turn gives me bouts of depression, as i just can't cope with the pain. I was 45, so a good bit older than you but still too embarrassed to use a scooter. A friend gave me a rollator with a seat to take and i thought i'll take it but i wont use it because I'm too young. It was a life saver, I used it everyday, everywhere. It folds up like a buggy, so neatly say beside me on the bus. I went at my own pace and family could run ahead if they wanted (they didn't). The good thing with the DAS pass is that someone in your party can run and get your return time, they just scan their band. You don't need to be there just to get the time and as soon as you use it you can get another one. I found this a great help. With the seat on the rollator, i could just sit down when i needed and have a drink (recommend the coke float from the ice-cream shop MK)cool down and take pain relief if needed. I'm learning stuff on this thread though that I didn't know. Does anyone know where o contact to get a parking pass?
I go next year in the middle of the summer for my 50th(should have been this November but cancelled)and now have my own rollator, all pimped out for the weather. lol
It has a rechargeable, wrap around fan, attachable bag, umbrella holder (rain or shine) and I will get a scooter if I can't cope. I will find that hard but it I have to, I will. The most important thing is having the most pleasant, comfortable holiday as possible. Have a great time.
I find that the whole thing with an Orlando holiday is the planning, no matter what your party make up is. Plan what you can, then go with the flow.

[Jennywren]

Hi

Details of how to apply can be found here :

octaxcol/motor-vehic...king-placards/

Unfortunately because our UK blue badges do not have the wheelchair symbol printed on them (they are only in hologram) our blue badges cannot be used in Florida.

The system seems to have changed slightly since I last applied but I have always found the staff at the Tax Collectors Office very helpful, if you e-mail them or give them a ring.

Hope this helps.

[Mental Minnie]

Originally Posted by Jennywren

Hi

Details of how to apply can be found here :

octaxcol/motor-vehic...king-placards/

Unfortunately because our UK blue badges do not have the wheelchair symbol printed on them (they are only in hologram) our blue badges cannot be used in Florida.

The system seems to have changed slightly since I last applied but I have always found the staff at the Tax Collectors Office very helpful, if you e-mail them or give them a ring.

Hope this helps.

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Thank you. I went in and had a look. We don't go until next July but I will contact them on Monday and see when i need to apply. Thanks again.

[Peut-Être]

Hi,

I know this thread has been quiet for a while, but I was also diagnosed with ME last year and have IBS. January 22 is my first trip since diagnosis and I am a little anxious!

I have ummed and ahhhed about getting a scooter because of being young too (I'll be turning 26 during my trip)... So I am keen to hear positive stories for any other spoonies!

Sending hugs to you all x