Some advice for WDW and illness similar to MS

[writermommy6]

We have been planning our trip to WDW for quite a while. I thought my increased tiredness over the last half of 2015 was nothing more than stress and our super busy life. Only no matter how much I slept, it was never enough. My twice a week workouts dwindled to nothing because even 5 minutes on the treadmill left me winded. Long story short, I am now dealing with b12 deficiency and Pernicious Anemia. At least those are my current diagnosis. This results in symptoms that mimic MS (neurologist ruled it out after a MRI).

It has been suggested that we postpone our trip until next year so that my health will be better. I understand the concern, but according to my prognosis, I don't actually "get better". I will have to be on b12 shots my entire life and continually balance my diet so that other vitamin levels don't drop.

For those that have medical problems, have you ever taken a Dis trip that you regretted? I know I will have to pace myself and maybe use a wheelchair as walking/standing can tire me out sooner. Told hubby we may check out getting a rollator for easier use. I'm only 40 but if it helps me be able to enjoy my kids and my happy place then I've got no shame in using any of it.

I guess this is a What would you do? type of question. Thanks in advance!!

 

[powellrj]

I would go, but be prepared to take it easy. Are your kids older so they don't need you to be hands on 100% of the time? It was easier when they could ride without me and I would just watch.

 

[gap2368]

We have been planning our trip to WDW for quite a while. I thought my increased tiredness over the last half of 2015 was nothing more than stress and our super busy life. Only no matter how much I slept, it was never enough. My twice a week workouts dwindled to nothing because even 5 minutes on the treadmill left me winded. Long story short, I am now dealing with b12 deficiency and Pernicious Anemia. At least those are my current diagnosis. This results in symptoms that mimic MS (neurologist ruled it out after a MRI).

It has been suggested that we postpone our trip until next year so that my health will be better. I understand the concern, but according to my prognosis, I don't actually "get better". I will have to be on b12 shots my entire life and continually balance my diet so that other vitamin levels don't drop.

For those that have medical problems, have you ever taken a Dis trip that you regretted? I know I will have to pace myself and maybe use a wheelchair as walking/standing can tire me out sooner. Told hubby we may check out getting a rollator for easier use. I'm only 40 but if it helps me be able to enjoy my kids and my happy place then I've got no shame in using any of it.

I guess this is a What would you do? type of question. Thanks in advance!!

I would go and understand you may not be able to do the things you used to. Some things you may want to try

book your FP for the crowds times of the day normally 11 wish to 7 ( but remember you can book more FP after you used your first one)

take in some show these are nice since they are in door and AC and normally have a short line.

watch the parade get there about an hour early to get a good spot and rest.

try and rope drop if you can as the crowds are less

maybe go back to your resort to rest mid to late afternoon when if can be the hottest

first aid can be your best friend as there are beds ( coats) in there to lie down and normally very quiet ( they do try to keep the noise down but some times you get a hurt child that is really hurt)

past your self try not to do to much as this can cause you to burn out and it may take a few days to recover

stay hydrated and eat

stay cool ( I do not know when you are going) but the sun and heat can zap any one energy
so a hat with a brim a portable fain with a mister a cooling clothes ( I use O2cool) and I like the columbia omni freeze I think they really work great

 

[writermommy6]

Thanks for the support. My kids are 9, 12, 14 and 17, plus we'll be taking the 17 year old's BFF (which is like another daughter). So they are pretty self reliant in being able to do stuff. We are also taking my mom who can help tag team with hubby if we need her to. I don't think hubby and others want to admit that while I might get some "better", I will never be back to "normal". I was afraid I was being totally irrational, but figured I would ask those that know what it's like and get honest answers.

We're going May 20-27 so hoping for only medium crowds and that the weather is at least a little on the cooler side. We did Universal a few years ago during this time and it was awesome.
Oh and I'm fully prepared to take breaks and not be able to do open to close.

 

[nikkislaght]

our first trip was a year after my diagnosis , and I have never regretted any of our trips. Know your bodies limits and dont be upset about saying you need a rest.
take the slow road, and enjoy being in the moment.. train your kids now to pack their own gear around. that way you can focus on having fun with them and not worrying about where everything is.. that believe it or not can take a toll.
use what ever means of getting around that you can.. I Currently use a cane.. but will be using a W/C in the next couple of years.. aint no shame in that. and like you said.. if it helps you enjoy the parks with your kids then so be it.
Im 47 yrs old.. feel like 100 sometimes.. so I really do need to pace myself..
build up the stamina before you leave, even if its walking around your block , good shoes that support and protect ..
good diet , hydrate and protect from sun rays..
Hope you have a great trip..

 

[SueM in MN]

Was the Doctor the one suggesting putting the trip off?
If so, I would suggest talking to the doctor to see exactly why and how long the doctor would suggest waiting and what the doctor would suggest if you don't want to wait.

Pernicious anemia is a chronic condition and does require lifelong treatment, but once treatment has begun, most people do very well. When I was a Home Care Nurse, I saw some patients for monthly B12 shots. If someone doesn't get their spots, the symptoms begin again, but most people see the majority of their symptoms go away once they start the shots.
https://www.nlm.nih.gov/medlineplus/ency/article/000569.htm

http://www.healthline.com/health/pernicious-anemia#Causes3

If you go, I agree that you need to take it easy. See how it goes and don't push it.

 

[StitchesGr8Fan]

My mom has the same thing as you and she is 74 now, living a mostly normal life. As long as you stay on top of things you should feel pretty good.

 

[writermommy6]

No the doc hasn't suggested it. Of course she also doesn't think that all of my symptoms are PA related, but that's another story.

 

[Paula Sedley-Burke]

I don't have your condition and first off sorry for your diagnosis. But I can say my wife and I have been going to WDW since 2008. I was very fit and able then. I use to ski. Now through an autoimmune disease I am wheelchair bound, cannot lift my own head from lying on a pillow, get up from a seat or toilet. Or prepare food. I am reliant on my chair and my ever supportive wife and a carer that comes. We still come at least once a year flying from the UK and we do DCL. Love the cruise! Sure the vacations have changed. But I don't enjoy them any less. In fact life is so hard at home my wife works full time and cares for me we look forward to our Disney time! We even purchased DVC. We just schedule breaks in the day. It is easier staying on world if your budget allows and using the transport. Come back sit by the pool in the afternoon. It's a vacation. Your kids will love splashing around in the lovely pools anyway!

 

[SueM in MN]

No the doc hasn't suggested it. Of course she also doesn't think that all of my symptoms are PA related, but that's another story.

if the doctor was suggesting it, I would put a lot more weight on it.

One thing you can do regarding the doctor is ask how long after starting treatment to expect results and what level of results to start with.

 

[ttintagel]

Everyone has given great advice! I only have two things to add.

Whatever medications you're taking, especially medications for pain, make sure to stay on a schedule for them and not wait to take them until symptoms appear. What with the heat and over-stimulation of a Disney trip, it's really easy not to notice symptoms until they get so bad that it's hard for the medication to work.

You mentioned diet - we always make sure to get some groceries delivered from Garden Grocer is so that I can have healthy breakfast and snacks with me. I also carry a reusable water bottle, and fill it up whenever I can at fountains or Quick Service restaurants.

We've been in late May, and found the crowds absolutely manageable.

 

[magicmia]

Sorry to hear of your diagnosis.but thankful for the post and all the helpful responses. I have been pondering the same situAtion- recently diagnosed with MS and have a trip planned for June so this helped. I hope you have a wonderful trip.

 

[DisneyOma]

If 5 minutes on a treadmill get you winded, you need an ECV for WDW.

 

[writermommy6]

Thanks everyone. Yes, we've discussed a manual wheelchair as well as an ECV. It really comes down to crowds and how my brain is doing. That sounds weird but if I'm really hot/tired/overstimulated then my reflexes are not always the best. I will take all of your suggestions and use them. The good thing about my mom coming is that if I need a break then either she or my husband can stay with the kids and then the other can stay with me. You guys are awesome.

 

[MaryLovesPoohBear]

I've had very low B-12 and iron. It only took a year to get it back up and by that time they realized why my body wasn't absorbing it. Like you I lost all of my stamina and my brain was foggy. (Low B-12 can also make you paranoid.) (I was diagnosed with Celiac.)

During that time using an ECV worked for me. When it came to the point that I was overtired/hot, I also needed a break. So I would go indoors and park it in a corner and take a rest. There is a list somewhere on this site about great places to rest while in the parks. Indoor theaters are the best. I've even napped in those.

Since then, I have been diagnosed with Lupus and RA. (Yes, both) So an ECV will be the norm for me. I will just plan rest times and enjoy what I can.

 

[JoyFaithGrace]

Perhaps one of those chairs with the joystick, that way someone else can easily steer you if necessary.

I have fibro and while I can now (couldn't for a long time) tackle shopping when at Disney I need an ecv.

 

[ErinTwinmom]

If you feel comfortable driving I would get at ecv over a wheelchair but it sounds like you have a lot of support going with you, so I'd go for it.

 

[SueM in MN]

Perhaps one of those chairs with the joystick, that way someone else can easily steer you if necessary.

I have fibro and while I can now (couldn't for a long time) tackle shopping when at Disney I need an ecv.

those chairs with joysticks are power wheelchairs - they look very easy to drive, but are nowhere near as easy as they look.
The joystick controls everything - forward, reverse, turning, speed. Pushing the joystick straight ahead makes it go straight, but even a tiny bit less than straight forward will turn it.
Because they have more of a learning curve to drive, most of the rental companies will only rent them for use by someone who is experienced in using one (for example, someone who uses one at home, but does not want to travel with it.

I saw an almost really bad situation a few days ago with a rented power wheelchair while we were waiting at Jungle Cruise for the wheelchair accessible boat. A woman was stepping off the boat and a CM had brought her power wheelchair close to the boat for her to transfer. When she was leaving the dock, she turned toward the boat instead of away from it (lucky the boat was there because she hit it instead of going off the dock). Then she hit another woman in her group in the legs twice and sped past the boat along the dock. Luckily, she stopped before reaching the end of the boat or the CM that was standing at that end of the boat.
Going out the gate to leave the dock area, she wasn't going straight and hit the side of the gate. Then, she hit the same woman in the legs that she had hit before.
Going up the hill to leave the Jungle Cruise area, she nearly hit 2 people who were coming down the hill.

 

[ttintagel]

Since then, I have been diagnosed with Lupus and RA. (Yes, both) So an ECV will be the norm for me. I will just plan rest times and enjoy what I can.

I have both PA and Lupus; my endocrinologist said that they often come together and that one could confuse the test for the other.

 

[JoyFaithGrace]

Holy heck that could have been even more horrible! I've never used one, only seen the commercials.