Three years ago we planned a trip to Italy for my 50th birthday. But, instead I had spine surgery #3 and #4, and developed wicked CRPS. The surgeon said I had "radiculopathy" that would improve and I would be back to work in 8 weeks. WELL ..... 3 years later I am still unable to work and use a cane to walk short distance and a wheelchair for more than a small distance. I had given up on my dream to take this special trip.

My husband, daughter and I decided this was something we still very much wanted to do, so we made the arrangements and our flight leaves Monday night. That's the good news!!


Here's where I need some help from all my CRPSy friends. I am so nervous about coping and managing with the "work" of traveling. Getting from point A to B,getting on and off trains, planes and taxis, managing my pain while vacationing. All of this worries me. I have discussed this at length with my husband and daugther,and they keep telling me things like "we will take our time, pace our activities, you will be fine". But,it is hard to explain to them the level of anxiety I am feeling.

Can anyone out there relate and share some thoughts?You guys are the only ones who truly "get it". Thanks in advance for any help.
~Lottie

Lottie,
I never travel out the country ,recently I had to travel 3 hours trip to a visit a sick relative , I can't sit for so long or walk,either way is hard for me,I was sure to take my anxiety meds 30 minutes before leaving home, second my first dosage of pain killers, if you travel obviously over the seas, your sleeping pill will come handy also 30 minutes before getting your flight,about the switching cars ,taxis, you are in good hands,trust your husband and daughter,they know for sure what to do, relax and enjoy your trip,is normal to feel scare but enjoy your life,don't postponed happiness for being scare , kick scare butt far away from you , and enjoy your beautiful family time , you will for sure have the best time ever, check your list of meds with original bottles obviously ,specially pain killers ,anxiety or sleeping meds, have enough meds for the trip, a book to read , and enjoy don't worry.
hope you a nice trip and relax,blest wishes from Jesika .
Ps forgot to mention, for sure you will be in the plane maybe for more than 5 hours,make sure you take with you one of those little pillows like a horseshoe shape or U form to relax and hold your neck,they are available on bath,body and beyond ,the ones like as seen on TV, round and can be shaped as a U, hope you get the idea ,they are not heavy but comfi.

How awesome that you are taking the trip!!

I would say try and relax about what may happen or how you may feel... as we all know it is easier said than done!

I would think the plane would be the worst part. I haven't flown for years, even before my RSD. I also have RA and have found that when I fly the cramped seating makes me uncomfortable.

I agree with trust your husband and daughter. Also be sure to let them know how you are feeling, if you need to rest, etc.

Most of all enjoy yourself!!

You really should have tried a shorter trip first, I flew for 4hrs 5 weeks after getting this but not knowing what it was. I came very close to walking out into the sea rather than face the flight back. Then it was only in my hand now it's spread upto the elbow and is in both legs. Only left the house 4 times this year only about 3 miles each way.

Lottie!

My first time out of the house I went to see a movie to prove to myself I could still be "normal." I hadn't seen a movie in years. Sat there by myself in flip flops with my whole leg burning red and pouring sweat all over the floor, in the back row so I could jump up and sit down every 60 seconds. I felt like SCREAMING at the previews for taking so long.

The movie was awful. The pain was even worse.

It was one of the best days of my life.

I went to Comic Con this spring for one day. It was my first time ever going to one, but I've always wanted to because I'm a total geek. I took the train into the city because parking is a nightmare and I would have had to walk unimaginable distances to get to the building if I drove. I had to take pain meds throughout the day and was still in unimaginable pain when I got home. And like you, it was one of the best days of my life! This fall I'm planning all three days of the fall con. Can't wait!!!

I believe our experiences and trips are what we make of them. Yes, there is a lot we can't control like our pain and other types of suffering. But there is so much we can control, and most importantly is how we deal with what we're handed. You may find that you need a day to rest up after you get there, I know I would. Beyond that, as long as you take things at whatever pace you can handle I think you'll be fine. It sounds like you have an awesome family to support you and I hope you have a wonderful time. Don't let the rough edges of this stupid disease rob you of a great experience. Take everything in and don't hold back on experiencing it all!

Wow Lottie that's wonderful & brave!
I get nerve blocks which help for me but I know don't help
for many others. Still I get break thru pain & burning & I get
so tired from over doing.
I'm planning a mini vacation, but nothing as grand or ambitious
as yours. Still, I'm a little apprehensive too & we only have about
a 6-7 hr. roadtrip to the California coast.
So, for me I'd take my "emergency" pain med., ketamine cream,
heating pad, something to put on my arm to warn others to steer clear.
If yours is in your spine I don't know how you'd do that! How do
you keep people from bumping into you?
I think you should do it anyway! I know I never want to
hold my husband/family back from anything.
Hope you get better & more specific advice from others.

Lottie, I hope have a great trip! I'm am so happy for you. I don't travel much anymore because of my rsd, but when I have to take long car rides to drs appts or family get togethers I make sure to bring all my meds and extras of them, and also try to get plenty of rest a good week prior. I also recline the seat and try to nap on the way and bring water and snacks and peppermint gum or candy for nausea. I know this isn't much help, but it woks for me. I think you are so brave for flying. I hope you have a wonderful time. Love and soft hugs, Renee.
PS - I also wear comfy clothes that are stretchy and lightweight. You can always layer, so if you get cold, it's always handy to have a sweater to put on. Enjoy!

Thanks to everyone who replied. I appreciate your support. We've been traveling six days now and I only lost my composure once. Trying to negotiate 700 year old cobblestone streets in a wheelchair and the occassional walking with a cane is very challenging. Ramps are hard to find, handicapped signage is non-existent, but the Italian people have been warm and gracious, willing to pitch in to help.
Pacing my activities and controlling pain and fatigue is somedays ok, somedays not. ~lottie

But you're so doing it!! You go girl! You should be so proud of yourself!!! and bonus, memories to last and share the rest of your life. My goodness... I could eat my way through Italy.. Have some pasta and Merlot for me Lottie! Take lots of pictures and enjoy yourself hon. ps.. sorry I was late on this.

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