Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 08-10-2010, 03:39 PM #1
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catra121 catra121 is offline
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catra121 catra121 is offline
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Join Date: Jan 2010
Location: Illinois
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Default Traveling with RSD

I am planning a trip to...gulp...Disney World with my mother in September. I LOVE Disney World but I obviously have some serious concerns about such a trip with RSD. I mean...I don't want to get off the couch...what makes me think I can handle a theme park.

But we have talked about doing this for YEARS...me and my mom. Mother, daughter trip. And since getting hurt it really has made me think that I need to do these things while I can. Right now it's my ankle...but what if it gets worse? What if the hard days become the impossible days? I know it doesn't do me any good to worry about things that I can't possibly know about...but I can't help it.

So...my plans are to bring a TENS unit, my heating pad, medications (obviously), and I have planned 2-3 sit down meals a day which will allow me to take it easy and rest several times a day. I have resolved to rent a wheel chair or electric cart if I feel like I NEED to...but I'm hoping that won't be necessary.

I walk and am on my feet 9+ hours a day at work...so I think I can handle it...but I have noticed a big difference in the way that I mentally process the pain at work and when I am not at work. Things like shopping with my mom at a mall are something I cannot handle for more than an hour or two...and those 2 hours or so are miserable. I think it's because at work my mind is constantly occupied by the millions of things that are going on or need to be done. At home...out with mom...I just can't seem to focus on something enough to distract me from the pain.

So...my concern is that I will be miserable no matter what I do on this trip. I am trying to stay positive...it's how I cope with the day to day stuff...telling myself that I NEED to get up and that I NEED to keep moving. I'm 26 years old and I am NOT going to curl up an die...but I have days when that is harder than others. And today, while planning my trip and reading guides, I found myself suddenly overcome with concern and doubt and I just needed someplace to vent and let it out.

So...any words of wisdom? About traveling? Advice? Anyone actually been to Disney or a theme park since their diagnosis? Anyone think I am totally nuts for even thinking about attempting something like this with RSD? Cause...right now...I have some serious doubts about whether or not I will be able to handle this.
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