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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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#1 | ||
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![]() 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
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1999 Chronic spine pain related to Degenerative Disc Disease, Sept 2001. C6 / C7 discectomy & fusion. Jan. 2005 L5/S1 discectomy and Artificial Disc Replacement. July 2011 removal of broken . Artificial Disc Replacement. Woke up in recovery room with RSD Monster.: . Aug 2011 Stabilization of spine at L3/L4/L5. October 2014 Rheumatoid Arthritis. |
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#2 | |||
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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. ![]() 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.
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. Last edited by eevo61; 06-16-2014 at 11:25 PM. |
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#3 | |||
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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!!
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Zookeeper ~Shelly~ |
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#4 | ||
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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.
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#5 | |||
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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. |
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"Thanks for this!" says: | allentgamer (06-30-2014), AZ-Di (06-16-2014), Burnbabyburn (06-17-2014), eevo61 (06-16-2014), Lottie (06-21-2014) |
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#6 | |||
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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! ![]()
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"...it needs to be about 20% cooler." Celiac DX Dec 2012; over 30 years symptoms to DX CRPS DX March 2014; 5 years, 1 month from first symptom to DX |
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"Thanks for this!" says: | allentgamer (06-30-2014), AZ-Di (06-16-2014), eevo61 (06-16-2014), Lottie (06-21-2014), visioniosiv (06-30-2014) |
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