Traveling - can you do it? And how?

Discussion in 'Fibromyalgia Main Forum' started by JewelRA, Aug 6, 2009.

  1. JewelRA

    JewelRA New Member

    Well, what a week! I just got back from the beach, which was my first time away from home in 4 years. My first trip since being diagnosed with this DD. And I must say, it sure is more difficult than it used to be to put it mildly. I knew it was going to be hard, especially the sleeping situation, because I just don't sleep anywhere but my own bed.

    Sure enough, my fears were realized, and the bed I slept on was about as soft and comfortable as a concrete slab. I was in AGONY on it!! With my Cuddle Ewe quilt I brought with me and about 10 other pillows piled up, and many sleeping aids, I was able to get some sleep. But my back was in agony by the second or third day. I could hardly walk. We were supposed to stay a full week - Saturday to Saturday - but we came back Wednesday. I knew by Tuesday I was just "done". My very wise dh said, "You're not enjoying it anymore. It's time to go".

    The trip alone really took a lot out of me. Thank God my dh did all the driving or it would have been even worse. It's supposed to be about a 5 hour drive, but Saturday it took almost 9 hours due to horrible traffic!!! Aaaaahhhgggg!!!!!

    OK, on top of that, I was with my Mom, brother and his girlfriend, so I was in "socialize" mode the whole time. That and the fact that they TOTALLY don't get my illness (even though my mom supposedly has fibro too. I can't tell it). My brother and his girlfriend didn't seem to care what I did, they were on their own schedule, but my mom was particularly put out when I had to rest and couldn't constantly go shopping and eating out with her.

    On the positive side, my kids had a blast ,and I know they are at the age where they are making special family memories. So I HATE the thought of never traveling with them and doing fun things. Also, the ocean was georgeous, the air so clean and fresh, and I loved being in the warm water and sun all day.

    But boy, I am really debating whether or not it has been worth it. I am sore, sore, sore and exhausted beyond measure. More than the usual. I'm wondering how long it will take me to get back to "normal".

    I'm wondering how many of you are still able to travel. And if so, what special "accommodations" you have to make to do so? I hate to give up this pleasure, for myself and for my family's sake.
  2. JewelRA

    JewelRA New Member

    Hi, jaminhealth, nice to hear from you!

    No kidding about the comfortable bed and surroundings of your own home. I wanted to kiss the ground when I got home, but I was too tired. LOL.

    I can't imagine navigating an airport either!! I have had a terrible fear of flying, even before this pain and fatigue have attacked my life.

    I am so sorry that you are unable to visit your sister. That must really be hard. But you're right, we can only do what we can do.

    Thanks, jamin.

    ~ Hoping for some more replies too! :) ~
  3. greatgran

    greatgran Member

    Oh, how I can relate to your trip.. I haven't been on a vacation in 5 years same symptoms as you had and more.. We went to my son-in-laws wedding, a five hr. trip by the time we got there I was to exhausted to attend the wedding so stayed in the motel missed all the fun. I had told my husband that it would be better if we go the day before and give me time to rest up but he wanted to go the day of the wedding and spend the night and come back the next day , well needless to say it was a miserable trip..

    The answer to your post, No I am not able to travel, heck I am lucky to get to do a few things around the city I live in..

    My daughter lives in FL has been there 13 years and I have only been to visit once and that was before the dd.. She visits every two years , she and the granddaughter and are here now..They came for a 3 wk visit and I love seeing them but I am exhausted from company.

    So no travel , little socializing my body, mind just can't handle it. There are those with the dd that do travel and do ok but I honestly think they have a mild case..

    Its sad because I love the beach and at my age would love to go one more time but just the thoughts of getting there and spending all that money and being miserable just isn't worth it.

    There are so many things I would like to do and places to go, just simple things and places and it breaks my heart I can't but have to accept and be thankful for what I can do. Not that I always do..

    May God Bless,

    CATHYRG New Member

    for me to be out in the sun is asking for a relapse I can handle about 45 -to an hour if its not steady laying in the sun or being on the beach. the fatique takes over and nausea sets in.I am on meds that heighten the effects of the sun,but even before the sun was not always my friend unless I didn't overdo it. yes, we travel it takes us longer and I ration my walking and outside times. my husband has learned if he doesn't want to spend our trip in the Ergent care or a motel room watching me be sick or sleep we must take a little more timeit works for us.
  5. 3gs

    3gs New Member

    I havent been able to travel in 5yrs. Used to go to Oregon every year to see my sis,now the thought of flying is overwhelming. Scared if I book a ticket on day of flight I;ll be down.

    Also used to sleep over with grandkids,no more don't even have them sleepover!

    My niece who was diagnosed with fibro this last yr is having major problems traveling now. She gets panic attacks and it takes a toll.

    one thing if flying-neck pillow-have something to put your feet up on-move around. driving-lots of stops-lay down in back seat. give yourself day to recoup on going and coming back
  6. harrysmom

    harrysmom Member

    I read your letter with interest and empathy. In our minds we so want to get out and see something interesting or stimulating even if we feel lousy, but with the CFS/Fibro stuff it is so hard and takes so much special planning and being flexible about schceduling.

    I personally, having CFS and Fibro, couldn't go anywhere alone. I have been sick for 13 years and am 62. My roommate insisted a few years ago that I get a lightweight, folding wheelchair so that she could take me out so that I wouldn't become a mental case. I fought her on it, but eventually gave in and it's been a good thing for us.

    She drives and we use the wheel chair. We live in GA, but I'm originally from CT and from time to time get so homesick so in 2005 she drove me to Vermont and last October she took me to MA and CT and by staying in one of those extended stay hotels for a week at a time in one location we were able to see many interesting things, but on my schedule, which usually meant we didn't go out in the morning, but by afternoon I felt up to getting out. I look at the pictures we took now and think about all the places we saw and all the scenery and I know it was a good thing for me mentally to get out. It's just that I could never have done it without her driving and pushing the wheelchair and carrying suitcases. she's a gem.

    I would tell people to try a trip if you have someone who understands you and your limitations, if you have the freedom of using your own car or SUV so you don't have to deal with airports, and stay in one place for many days so you can rest when you need to and go out when you're up to it. Also, have realistic expectations and don't beat yourself up when you can't do all the stuff you could when you were "normal". It might mean seeing only one thing one day and resting the next. Or, eating in your room rather than going out for dinner. Pacing is important. The biggest thing, I think, is having someone you can depend on and who understands your illness and doesn't mind adapting to your needs on the trip.

    I would also like to add that it wasn't until about 9 years or so into my illness that I actually attempted a long trip like that. That is because I was my sickest during those first years and NEVER went anywhere other than being taken to an appointment or maybe taken for a little ride or trying to visit my elderly father 2 hours away.....and even that was very difficult. So...there's hope, folks. My best to all who struggle here.

  7. JewelRA

    JewelRA New Member

    I am so happy to have all these replies from everyone. I plan to print them out and read them, as I am having a hard time sitting at the computer for long periods of time. I am in a definite flare now. The pain is not as terrible as it was, thank God, but the brain fog and fatigue are overhwelming, and a little scary.

    Hopefully, I can answer everyone independently in a few days, but I just can't right now.

    I do have to reply to BroadCaster, though, that I didn't mean to imply that someone with a milder case of FM than I have doesn't really have it. I hope I didn't offend anyone here on the boards about that. I have much deeper, long-standing issues with my mother, and I guess that came across in my post. Anyway, I apologize for that.

    I must go rest now, but I thank everyone for responding.
  8. MsE

    MsE New Member

    I traveled this spring. My daughter came to fetch me in Seattle and we traveled to her home in Rovinj, Croatia, where I stayed a bit over a month. While there I saw Venice, some of Slovenia, and a bit of Germany as well as the Istrian Peninsula of Croatia. It was gorgeous and it was wonderful and it was exhausting.

    Had some bad days while I was there; days when I ended up sleeping, unable to move, and one day when I was so exhausted I broke down in tears.However, overall I managed. It was one of those completely unusual, once-in-a-lifetime chances and I decided to take it, knowing full well I would pay the price.

    When I got home I was down and out for almost two months. Would I do it again? I sort of doubt it, but hey...if I had another stretch of "feeling almost normal" time, as I did in March before I left, I might. Maybe. Perhaps. Not so sure.

    Postscript: I never would have done it if I hadn't had my daughter with me to act as tour guide and help out when I was wobbly.[This Message was Edited on 08/09/2009]
  9. Well my travel nowdays is two to three days. I take all meds I MIGHT need just in case. I take heating pad, ice pks, my pillow. We stop alot as my hubby smokes and makes more potty stops than I do , so I try to at least stand up and stretch. I am going soon on a 4 hr trip and am already worrying as my low back and hips already hurt so bad. sigh.... (by the way my sil says she has fibro, so I understand what u mean as she has everything and more than I have, but maybe she has a mild case but I am leary as she never sits still, shops nonstop, travels hrs to kids, works, go, go , goes, etc)

    good luck to you
  10. Empower

    Empower New Member

    I haven't attempted to travel for about 8 years, so I am glad to hear that you were able to get away, even if it was for a few days

    At least you tried!!!

    One hour is the maximum that I can sit in a car. After that, I am totally miserable

    Good for you and it is good that you have an understanding husband
  11. Nanie46

    Nanie46 Moderator

    The only thing that has helped me with the neck and back pain and stiffness that is made worse by sitting in the car, is doxycycline or tetracycline.

    I also take a small pillow for behind my back in the car, and take an eggcrate mattress topper to use on top of hotel mattresses.
  12. Aberlaine

    Aberlaine Member

    The only travel I do now is to Arkansas to visit my daughter and two granddaughters. But it takes all my energy just to make the reservations!

    I try to conserve as much energy as I can right before the trip. I make sure that I have plenty of time between flights (I have to change planes twice). I'd rather wait at a gate than run for a plane.

    My daughter knows that I'll be arriving totally exhausted and stressed out. My visit is usually for 10 days and the first day, she lets me try to recover. My grands go to school and she works from home, so I spend most of that first day in bed.

    My partner keeps talking about taking a car trip around the country. He's nine years older than I am and I'll probably have to do most of the driving. Needless to say, I don't encourage him!