Feeling blue. :(

[wdw_nutz]

Hi...

I don't really have a question or anything - I just wanted to post in a place I know people will understand how I'm feeling.

I leave for WDW on Thursday, arrive Friday for 2 weeks at OKW. Tis is our last trip for a few years, and we've been looking forward to it and saving all year.

But I just feel awful. I have Chronic Fatigue Syndrome and Fibromyalgia and for some reason both conditions have massively flared up over the last 6 weeks or so.

My fatigue is at a level right now where I'm only awake for a few hours at a time and able to do very little in that time. My pain levels are constantly at a 6 or 7 (out of 10) and spike regularly to an 8 or 9.

I have pain everywhere from my ankle bones to my teeth. I can't get away from it. Meds that are strong enough to ease it make me drowsy.

I feel I'm going to miss this trip by sleeping in our room the whole time. I know that compared to so many of you my ailments are small, and I'm lucky but right now I just feel like sobbing because I so need this break, I need some happiness and some fun and it's all in jeopardy.

And now I have a cold and what I think is a throat infection too. There's no way to postpone because we would lose the flights at they are over £1000 for the 2 of us.

I'm sorry to moan. I'm so blessed to have a supportive partner and to be able to go at all. I just wish I could have normal muscles, joints, immunity and energy levels even if it was just for 2 weeks.

Thnks for reading. Bed time again now. Xxx

 

[jmartinez1895]

I am no doctor nor do I have any of your conditions so this is just a shot in the dark for me, but maybe your conditions have flared in part because of he stress that planning a vacation can bring. Maybe once you get there the pixie dust will help you out some and the stress of travel will be over as well. Even if you have to go to your room and rest often at least you will be doing it at Disney. I do hope that you will be able to enjoy your trip and have a very nice time. I sent up a little prayer for you and I'm sending good vibes your way.

 

[bound2travel]

I hear what you are saying and I am so sorry you feel the way you do. Wish I could do something to help. Like the pp, prayers for you to have a fun and relaxing trip.


I hope it is just the stress of a trip that causing the flare ups. Pain is .... well a pain.

Sometimes you just have to vent.

Have a safe flight and welcome to WDW!

 

[Bete]

I had a cousin who has exactly the two conditions you have. We did WDW together about 4 years ago. She was able to use a scooter and have a good time. There were a few days she slept in; there were a few days she went back to the room early. She managed to put in an average of 6 to 8 hours a day at the parks. We did it for a week.

If a scooter is a no go have your partner do a wheelchair for you. My mom takes naps in her wheelchair while we are in the parks. She loves to sleep through the Nemo show in AK, for example. The first aid centers in the parks have areas where you can actually take a nap and still stay at the park.

I strongly suggest alternating between more active and more passive activities. Do a ride and then a show; do another ride and see a parade; do another ride and have a snack or meal.

Two weeks is a long time. Maybe, you can do one day on and skip the next day and have complete rest.

Maybe, consult with your doctor very quickly and see if you can take the stronger drugs in a lower dose and maybe you won't get drowsy and just maybe you will have less pain. You could take the stronger drugs perhaps on a rest day. too. Maybe, that would help you for a couple of days afterwards before you would have to take the strong drugs again.

I hope it all works out. Maybe, it is stress as previously mentioned and perhaps you'll be better by the time you get to WDW.

 

[alizesmom]

Just sending some warm hugs to you. Karen

 

[minkydog]

No reason to apologize. Your pain is just as legitimate as anything someone else is experiencing. Everyone's tolerance for difficulty is different. Personally, I would find it hard to live with chronic pain and fatigue. You might look at my situation and say, "whoa. I couldn't do *that*". It's all relative.

I wonder if your recent flareup is related to whatever is causing your sore throat and cold symptoms. Of course, stress can do it too. Try not to put too much pressure on yourself to be "on" at WDW. It's okay if you need to sleep in, take breaks and not do everything there is to do. That's the big advantage of staying for 2 weeks--pace yourself.

I hope you have a wonderful, relaxing time at Disney World.

 

[lovedisney50]

My dh has fibromyaligia and RA. We rent a scooter and always leave park for a rest. I hope by taking things slower you can have a great trip.

 

[twinmum]

Don't forget that First Aid is another option for a resting spot. Our son (who has cerebral palsy) had a lovely rest on a bed in the Epcot First Aid centre on our last trip - made all the difference to his day.

 

[DisneyMim]

I just want to add my best wishes and hugs. I have fibro too and I know how you feel. I lost my mother in August after a LONG summer and then my son left for London for a year to get his masters. I am telling you this because I think my fibro has REALLY flared with the stress of everything I have been through. I am sitting here crying and have been for awhile now. I think that once you get to WDW you will feel better. If you are like me it's your "happy place" and I hope that once you get away some of the stress will go away. CF and fibro are very nasty illnesses. I keep hoping that they find the cause of them and let us get on with our lives.

I wish you the most wonderful, happy, stress-free, pain-free vacation!!

Enjoy The Magic!!

 

[eternaldisneyfan]

I suggest scheduling rest days where you recuperate from touring. Plan and prioritize. Sorry things are so rough. I totally get the sleepiness and pain conflict. Hope things turn out better than you expect.

 

[clanmcculloch]

Please don't delay in getting your throat checked. My DD13 gets joint pain and other body pain when she gets strep. She doesn't alwasy even get a sore throat with it. From everything I've read it seems that this is more likely to happen in those with autoimmune issues which you do have. Get checked.

I absolutely agree with getting a wheelchair. Conserve your energy. The reason I recommend a wheelchair over an ECV is because it can be mentally and emotionally draining to drive an ECV because there are just so many people around who jump in front of people and you have to be alert at all times. Having somebody push you in a wheelchair will allow you to conserve even more energy. Your energy is very limited so save it up as much as you can. Every bit makes a difference when you're on such short supply. It also means that if you do get really tired when you're away from your resort that you don't need to worry about being alert enough to get to the bus stop or first aid because somebody else will be in charge of "driving" since you're being pushed.

Definitely prioritize attractions. You have to accept that you won't be able to do everything. Pick your top things each day and make sure to go to those. After that, the rest is bonus.

You should probably also plan a time where you'll leave the park each day. Even if you're feeling great, leave the park and go relax at your resort or even just hang out somewhere like the lobby of the Grand Floridian for a couple hours relaxing. Schedule the down time as much as you schedule the park time or else the down time won't happen. You NEED down time to happen.

 

[wdw_nutz]

Hi,

I just wanted to say thank you very much to everyone for your kind words and thoughtful suggestions. I'm really moved by your messages.

I'm travelling in my manual chair and renting an ECV, best of both worlds. if it's a good day I'll use the ECV, if not the manual. We've planned a long rest for every day, some late mornings and some early nights and some non park days too. We also have at least 1 table-service meal a day.

Things were very bad on Tuesday and I thought I actually had 'flu. but by Wed morning I could sit up in bed and by evening I was walking again! Hurrah. Packing has been mostly done by DP but I'm feeling better than I was on Monday and a bit more ready for Disney. We had a long chat about how it will be a very different break this time but we're both ok with that.


I have lots of pain control things with me - Meds and splints and ice packs and various other things so I'm as prepared as I can be, and hoping realism and optimism in equal parts will get me through.

I'm praying now for a restful flight tomorrow, and thanking God for DP and DBF who has helped prep me tonight and will drive us to the airport tomorrow.

Thanks again for all your help - 1 last thing, are the first aid stations really ok with people popping in for some quiet space to take Meds and rest? I don't want to be in the way of someone needing actual first aid!

Love D xx

 

[wdw_nutz]

Hi,

I just wanted to say thank you very much to everyone for your kind words and thoughtful suggestions. I'm really moved by your messages and prayers.

I'm travelling in my manual chair and renting an ECV, best of both worlds. if it's a good day I'll use the ECV, if not the manual. We've planned a long rest for every day, some late mornings and some early nights and some non park days too. We also have at least 1 table-service meal a day.

Things were very bad on Tuesday and I thought I actually had 'flu. but by Wed morning I could sit up in bed and by evening I was walking again! Hurrah. Packing has been mostly done by DP but I'm feeling better than I was on Monday and a bit more ready for Disney. We had a long chat about how it will be a very different break this time but we're both ok with that.


I have lots of pain control things with me - Meds and splints and ice packs and various other things so I'm as prepared as I can be, and hoping realism and optimism in equal parts will get me through.

I'm praying now for a restful flight tomorrow, and thanking God for DP and DBF who has helped prep me tonight and will drive us to the airport tomorrow.

Thanks again for all your help - 1 last thing, are the first aid stations really ok with people popping in for some quiet space to take Meds and rest? I don't want to be in the way of someone needing actual first aid!

Love D xx