ME/CFS Assistance

[Slore]

Hey all

I’ve recently been diagnosed with ME/CFS and also have IBS. I’m worried to death how I will cope.

We’ve got a 3 week split stay. 2 weeks on site at Disney and 1 week Universal but will also do SW and BG.

We paid extra to stay on site so at least I have the transport if I need to get back to the hotel to rest.

I’ve booked a couple nights for premium hotel at Universal for express passes to help too.

I’ve made sure that we’ve got rest days and late starts in our plan and it’s the reason why we’ve gone for another week.

I just wondered if anyone had experience of the same and can share any tips please? It’s not until summer 2022 so have plenty of time to plan.

[Gryff]

I don’t have ME but fibromyalgia and since diagnosed Park days have changed
for us as I get exhausted very easily now my tips
Use a scooter ,stay hydrated , admit when enough is enough every day ,some days a early start next day a late start or split the day
Busch Gardens might be a challenge if you are using the transport as it makes it a really long day but there are plenty of places just to sit and chill
I do find now it takes me longer to adjust to the time changes. both on arrival and returning home so account for that the first few days
Try and stick as close as you can to how you eat at home a sudden change in my eating
Habits can really set my fibro into over drive
You may find you actually feel better on the whole I know I do if I accept how I feel on the day and plan accordingly
Medication make sure you have more than just enough
Book special assistant for the airport
Hope that has helped a little

[enjibenji]

Pool days, even if you sit under an umbrella all day and read or people watch. I have fibromyalgia and am finding road trips are better for me but when we did the parks, I would just do what I could walking wise and then sit and people watch, let the others go off and meet us later. I am doing dlp in december and will just take it slow. 😊

[Jennywren]

Hi,
So sorry to hear about your diagnosis.
I have officially had ME since 2005, and have IBS as well, and I have been to all the theme parks loads of times, but have never stayed on site.

My top tips
1 Use a mobility scooter if you have one at home ask the airline to take it for you they do so for free, or rent one when you get there. It will also help you get around at the airport, and outside the parks. Please don't try to tough it out without one.
2 Ask at Guest Relations for a Disabled Assistance Pass for you and your party. Once you have this you just go to the desk at the front of the queue for each ride/show and they will give you a time to return without having to wait in line. You can then rest in the shade or in some air conditioned shops etc while you are waiting instead of in the heat which is physically draining. Each park calls these passes something slightly different but they all do them.
3 Don't try to do too much each day plan for shorter days with rest breaks back at your accommodation. You can always go back to a park later in the day once you have rested.
4 Take a small fold up umbrella and use as a sun shade, and also use a sun hat.
5 Keep well hydrated.
6 Remember to keep some energy in reserve and pace yourself. If you need time out make sure you have it.
7 Do your research and decide what are your must do's and prioritise those first. But don't worry if you have to change your plans. I have been lucky enough to go more than 20 times over the years and still haven't done everything.
8 Get good SIM card's for your phones so you can keep in touch with the rest of your party and arrange to meet up with them if they want to go off and do something more adventurous. We use Three which means we can use our usual tariff.
9 If you have a blue badge at home consider applying for a temporary Disabled Parking Permit in Florida. Car parks in the US are usually huge.
10 Most parks have a disabled park map showing where disabled access parade and firework viewing areas are (assuming these have started again by the time you go) but they also show where the accessible rest rooms are located. These maps are usually in the racks with the other maps at the front entrances.

I hope this covers most things but feel free to personal message me if you want to ask anything else.

Hope you have a fantastic time.

[MargaretMouse]

Hi... I also have ME and IBS seems like the two often go together. I only do short days at the park, eg mornings or afternoons or evenings. I do go to a park every day but I feel more relaxed doing it this way. I drink plenty of water and use a hand held fan which really helps. The day I arrive I just unpack and relax as I find the journey very tiring. You will enjoy yourself, just pace yourself and rest when you can.

[Slore]

Thank you for all your tips and advice.

Will definitely look into the access passes for queues as I think that will be so useful. I’ve got Alton towers booked at the end of July so I’ve asked for a letter from my GP so will be great to test it out in the UK.

I think shorter days and resting when needed are going to be crucial for me. It’s not worth having the crash and being able to do nothing at all.

I don’t deal well with heat so will invest in a decent fan too.

I’m not currently a wheelchair user but I think it’s definitely something to consider when there.

Thank you again 😊

[Jennywren]

I would strongly recommend a mobility scooter over a wheelchair if you haven't taken the plunge yet, as you are not then reliant on someone else pushing you where you want to go and gives you a bit more independence, will be well worth you trying out before you go, you can always rent one for a few hours from a local shopmobility scheme in the UK or at Alton Towers to see how you get on with it. You can rent scooters at the parks but they are expensive and no guarantee one will be available when you need it. There are lots of local rental companies though if you want to wait till you get there but still works out quite expensive for a 2 - 3 week holiday, you can almost buy a new lightweight one here in the UK for what you will pay to rent one out there, plus you will then have it to use here as well.

A battery operated fan with a bottle of water attached they call them a "squeeze breeze" gives a refreshing cooling mist. Similar to this but widely sold in the parks amazon/Benross-402...c=1&th=1&psc=1

You can also get cooling neck towels like these
amazon/cooling-tow...cooling+towels

Hope this helps

[Disneysid]

Hi Slore. I have Fibromyalgia, CFS, IBS and Hypothroidism which all have overlapping symptoms around exhaustion, pain and overheating for me.

I 100% agree with the mobility scooter recommendations. I tried to manage without one, but it completely ruined the trip. I crashed hard and struggled to recover due to the heat and sheer amount of walking involved. There are a number of different models available from the many companies that offer them in Orlando, so you can choose what works for you.

If you are able to hire a car I would also suggest doing that, whether you’re staying onsite or not. It can take a lot longer to get around by Disney transportation than people expect and if you’re feeling wiped out that can make a big difference to recovery. We always stay on property but I couldn’t manage if we didn’t have a car. It means that you can leave whenever you need to, not have to work around a set schedule.

If you are able to I’d definitely suggest trying to be in the theme parks as early as possible each day you visit. The heat and humidity are already high first thing during the summer, so you’ll benefit from being away from the parks during the middle of the day when it can get scorching hot. I found the cooling towels absolutely essential to stop me overheating. If you do find yourself in difficulties, there is a First Aid room in each Disney park where you can go to either get help, or just cool down.

If you have a blue badge I’d definitely second the suggestion to get a temporary disability hang tag. It can make a real difference.

If you have any questions I’m sure someone here will be happy to try to help, myself included, so just ask.

[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!

[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.