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Went on vacation to disney with my family now have the worste flare...

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Posted 6/7/2014 12:57 AM (GMT 0)
We just got home this morning from a 7day trip to every park at Disney. I tried to rest as much as possible and sat out on a lot if the rides but it was really hard on me. Dh and I had several arguments because I wanted to slow down, skip something or to be honest got so worn out I was feeling witchy. mad But this diagnosis is new to us and we also got hit with the possibility I have lupus and or sjorgens the day before we left isn't helping.

I popped way more pain killers than I normally do so we could get through the week, make memories and have a good time, but it all hit me today. I couldn't even pull my rolling suitcase to the curb sad and by this afternoon had the most severe, lighting strike pains in my hips, shins, back, abdomen, hands, basically everywhere as well as the normal deep aches I usually feel. I held out until 6 and in tears took a loratabs. I just can't help but cry thinking this is what my life has become. Oh and my husband is off with his friends setting up for a big athletic event and having a beer sad sad ok pity party over, I just needed to tell someone who might actually understand.
Posted 6/7/2014 1:37 AM (GMT 0)
I'm sorry it hit you so hard but honestly, 7 days and every Disney park would do in anybody - My husband and offspring have annual passes and go to Disneyland several times a month, there are always stories of tourists arguing, a lot of stress having that Perfect Vacation, for any family.

You'll learn to respect what your body is telling you, pace yourself, and he'll learn to live with it, too. I'm not saying my husband of 30 years is delighted when I stay home, putter out, but he gets it.

Lupus/Sjorgens really aren't the end of your normal life, hang in there, relax, take care of yourself.
Posted 6/7/2014 3:44 AM (GMT 0)
I love amusement parks. I have been once to Disneyland and once to six flags. But now that I have fibro I imagine that it wouldn't be a good place to go.
There are certain things we cannot afford to do anymore. Try to get some rest, sleep, exercise. I am sorry you are having a hard time but eventually you will get to understand your body better.
Posted 6/7/2014 4:23 AM (GMT 0)
Hang in there and get some good rest. Lot's of warm baths and ice packs.
I think 7 days at DW would put me in my grave.
If you do have lupus all that sunshine can set off a nasty flare.

Feel better, hon.
Posted 6/7/2014 4:32 AM (GMT 0)
Hi, MrsFish.

Yeah, it is hard...no doubt about it. I just got back from 3 days in Wisconsin, visiting my hubby's family (none of them has a clue about Fibro.) I'm still recovering, 4 days after getting home. Everything hurts!! We didn't do anything unusual, but just sitting on the plane, sleeping in different beds, etc. takes its toll.

I rode the electric cart at the grocery today, for the first time in a very long time, because my legs hurt so much. My tendency is always to go out and walk, and try to build up some strength (which I never feel is working), but I've been realizing lately that sometimes I need to take it easy instead.

It is sobering to realize your new normal is so different from what it was. I'm glad you came here and vented to us - that's what we're here for!  :-)


Debbie

Posted 6/7/2014 6:20 AM (GMT 0)
Can so relate! One of our trips to disney over the years...i woke up one morning in a total flare...so not wanting to miss out on family time ..i had to use a wheel chair ...for that one day...because i gave my body that break when it demanded it..by the next day i was back walking the parks... I did not have all the tools to fighting the flares back then...

When our bodies are demanding to sit out..they are not kidding

Hope you rest up now and recover quickly...take good care of yourself

I love disney world...our kids almost loved epcot center better than anything else..and we would go there each night after the other parks closed.. I was always exhausted by then but have many great memories of it.
Posted 6/7/2014 6:39 AM (GMT 0)
I think you did amazingly well to do three parks in one day. I did one park a few years ago, had a wonderful time, but was sore for several days after. No way could I have done three parks!

We sometimes have to put our foot down. My husband and I went to California for our 25th anniversary and drove Highway 1 from San Francisco to San Diego. On our way we stopped in Big Sur. We wanted to see that famous rock formation with the waves splashing against it that they used to show in commercials. When we got to the area I needed to use the restroom. When I came out I couldn't find my husband. I looked over to the rental car and he wasn't sitting in it so I assumed he walked down the beach to the area where the rock was so I headed down the beach. This is when I had plantar faciitis so bad that I thought I'd faint when walking and walking on sand was killing me.

I got to the area but my husband wasn't there either. I waited for about five minutes but enjoyed the view. I headed back and nearly couldn't make it back to the car. When I went to open the door I saw my husband! He had laid the car seat back and was taking a nap. I woke him and told him where the rock was and he wanted me to go with him to see it. No way could I do that and we had the biggest argument over that. He refused to go by himself (trying to make me feel guilty) and I refused to go through more pain and possibly not being able to make it back and forth again. Needless to say, my husband never saw the rock formation. I felt badly but just couldn't do it and he really couldn't understand that.

But you know what? He had a lot of time to think about it as we headed to San Diego and I think that was his "aha" moment when it came to understanding my pain. From that point on he was more attentive when I was having a really bad day and was helping me more.

So give yourself a huge, gentle pat on your back! You did wonderfully well and accomplished what you wanted to do....make family memories!

Sherrine
Posted 6/7/2014 3:16 PM (GMT 0)
A friend of mine just got back from a river cruise that started in Switzerland and ended in Amsterdam. She told me it go-go-go all day and I thought I could have done that before fibro, but not now. It is sad for me to think there are some things I just cannot do anymore, but I know even without an activity like that, or Disneyland, it's one day at a time with lots of space between all activities. I hope you feel better soon!

Bella
Posted 6/7/2014 6:15 PM (GMT 0)
Bella, you can do that with fibro. I went on a river cruise that went from Nurenberg, Germany to Vienna, Austria and had a wonderful time. If you don't want to get off the boat you don't have to. I did, though, because we were visiting the Christmas markets along the way. I was able to buy unique gifts that year for my family. It was a neat trip. I also did other traveling including a two week tour of Italy. Some days were difficult but I wouldn't trade that experience for a million dollars. It definitely was worth the effort.

Once you get in control of your pain you can do just about anything..but you do have to pace yourself.

Sherrine
Posted 6/8/2014 12:07 AM (GMT 0)
I would dread a trip like that. I am sorry you had to endure the crash. There was a time where that trip would have sounded like so much fun.
BOOHOO
HEART
Posted 6/8/2014 2:08 AM (GMT 0)
When we shop I make sure my husband has his phone on him because if I lose him I don't want to search all over Costco. I can't be on my feet that long. People around me are starting to get what fibro is all about, it took awhile. Just like you get upset and frustrated that you can't do something they do too. But you get over that and so do they. Be patient with yourself. You have to pace yourself now.

barb
Posted 6/8/2014 8:04 AM (GMT 0)
Oh hon
Yes
That is your new life.. (& mine & others on this forum & all around the world ! )

Again tonite I have been running thru my mental list of what I CAN do.. grateful that I can see, have all my body parts, do not have additional chronic conditions, etc.
Is as close to being positive as I can manage!

Hope you can be Glad you made new good memories though YOUR cost was pretty heavy

Perhaps you feel like I do right now?

Year or so.ago I too took trip with family
Was chastized every single time I took measures to make my trip easier on me.

Miserable time - I bit my lip & smiled
Literally Begged to please just let me stay on beach or in room for just one day
Nope
They were Determined I was gonna have a good time.by being on the go constantly

Yes, it Was Good to see friends & Good to be with family, especially grandchildren

But being loudly humiliated -"you don't need a wheelchair".
."come on - hurry up - we are late- it's only a couple of blocks!!" ( it wasn't!!)
All the While being in pain, anticipating even more pain kinda ruined the fun parts for me

Thanks to all you'll as you provide insight, advice, that will help me/others.

Post Edited (DianeB) : 6/9/2014 10:05:02 PM (GMT-6)

Posted 6/8/2014 8:28 AM (GMT 0)
It took awhile to stop worrying about what others say. If I can't do something I don't do it. If I go shopping I grab a scooter cart, because I know I will need it. I take my cane with me if I'm having walking issues or will not have a cart handy.

If my back hurts I don't pick up items. I use my grabber.
If I'm hurting I say one simple word, "No!"
Posted 6/9/2014 1:34 PM (GMT 0)
There is no way I would be able to do that and survive. Kudos! (But don't try that again haha)

Sherrine - your story is hilarious! And I too love Big Sur. Some wonderful memories. I am now thinking of the mile long hike to Jade Cove which I will probably not be able to do again. But at least you saw the rock formation!! :)
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