Any Lymies?

[sapereaude]

Wanted to see if I could connect with some fellow Lymies that have been to or are planning trips to WDW while battling chronic Lyme. Both my son and I have it, though my son has been in treatment a lot longer and is significantly improved. I started treatment only a few months ago and I'm in really rough shape, I'm worried about how I'm going to handle my upcoming Disney vacation.

 

[seven dwarfs]

Wanted to see if I could connect with some fellow Lymies that have been to or are planning trips to WDW while battling chronic Lyme. Both my son and I have it, though my son has been in treatment a lot longer and is significantly improved. I started treatment only a few months ago and I'm in really rough shape, I'm worried about how I'm going to handle my upcoming Disney vacation.

My family has Lymes. There are not enough hours to tell you what we have been through. I am sure you feel the same.

We have been to Disney twice since while on treatment. My son who is 11, stayed in a stroller most of the trip. He has extreme joint pain, fatigue, and headaches. He was able to rest in between rides. I bought one from Toys R Us. We went one night to try them all out since he is about 60 lbs. The one we bought worked perfect. He has been off treatment for about two months now and so far he is doing well.

My daughter has lost her hearing (one ear is deaf, other about 27% word recognition with a hearing aide), suffers from head aches, nausea, and joint pain. The noises can really send her in a spiral. She is still in treatment and still very sick. She tested positive for Rocky Mountain Spotted Fever.

We used a Gac when we needed it. (That was the program at the time) My husband would have to carry him on most rides as it hurt him to walk. We used his stroller as a wheelchair. It saved our trip. We did have some rude comments from people who felt we were cheating the system. It didn't bother me. If my children overheard, I just smoothed it over by telling them that people do abuse the system and that we knew we needed it and that is all that matters. My son almost died so it really didn't matter to me what anyone thought.

I will add, it was rough on us. We changed how we toured the parks. We went with the flow. If we couldn't stay out late, we didn't. If they needed to sleep in we let them. We tried to rest more and were more leisurely. I also was very careful with our diet. Sugar and carbs being a no no for Lymes. It was hard to not eat yucky in Disney but I knew how important it was. I brought some snacks with me so when it was medicine time, they had something in their belly. Motrin was a must as well. I limit it at home.

Try to plan to get to the parks early if you can. Hit the most popular rides first. Save the shows for the middle of the day. This allows some rest time too.

I am sorry to see anyone else suffer with Lymes. It is an awful disease to have and so important to find others who understand. I wish you all the best during your trip and if you have any questions I will do my best to help answer them. My kids feed off of me. I can be high strung. If I was happy and relaxed, they seemed to follow.

 

[sammatt]

My Daughter (16) has Lyme. She's had it for 4.5 years, but only diagnosed for 15 months. You know how it is: joint pain, fatigue, insomnia, sound and light sensitivity, rib pain. And the list could go on and on.

We have been t Disneyland several times, but this Christmas trip will be our first to WDW in a wheelchair. We will use the return time cards when we can, as well as FP+. I hate to wake her up early in the morning to get to the parks, but that is the best way to see and do a lot before she hits a wall. I figure we'll leave the park around 2 every day and go back to the hotel. We may go back in, if she's feeling up to it, but we may just hang out at the resort. Thankfully, we have been before, so we don't feel the need to see and do everything. We'll just do what we can. Life is so challenging right now that any change of scenery, and fun to focus on, is much needed.

 

[cosine4]

I have Lyme and go quite often. It can get extremely exhausting, so I always have a contingency plan in the back of my mind wherever I am so that if I need to rest or get out of the crowd I know where that place is.

The issues that I have the most problems with are:
Mobility: I use a rolling walker with a seat so that I can lean and sit, this helps a lot. I would use a scooter, but the anxiety of trying to drive one in the crowd would be too much for me.

Anxiety: Being surrounded by people makes me very uncomfortable and can set off panic attacks (never had these before Lyme). My best advice for this is good planning, arrive early if possible, use fast passes and the return time cards, eat meals when the restaurants first open (this will allow for no lines and ample tables), park hop if the park is more crowded than expected (another one may be less crowded).

Sound: Certain sounds can really make my anxiety/stress/pain skyrocket. I don't always know what/when they will be, but at Disney there are lots of places that are loud (general crowd noise, music, rides) so I always carry a pair of ear plugs with me. It looks kinda silly but it really helps me so I don't care how it looks. Sometimes I will use headphones and listen to something that I like (music, audiobooks, radio) but at Disney that shuts out the magic. With ear plugs you can still hear what going on around you, just at a lower level.

Heat/Sweat: Sometimes I will carry a wash cloth with me (just in a zip lock back in my pocket/bag) and soak it in cool water to drape around my neck or wipe my face to cool down. I also take a small dry sack with a couple of zip lock bags lining it so that I can fill it with ice to have an ice pack anytime I need it. Sometimes restaurants will fill it for you, but if not first aid will. First aid will also make one for you if you do not have your own bag.


Hope this helps, have fun!