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Traveling with me/cfs

Discussion in 'Lifestyle Management' started by barbc56, Jan 15, 2013.

  1. barbc56

    barbc56 Senior Member

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    I had always envisioned my retirement as a time to travel. Well, that's out as well as the "road trip" I had been planning since I was in my twenties. I would probably be on the road for a day or less then take three days to recover. Heck, I'm not even sure I would make it out of the city limits.

    If anyone can give me some tips for traveling, it would be appreciated. If there is another thread about this, let me know.

    Are there travel agents or destinations for people with disabilities? Someplace cheap?

    Thanks in advance.

    Barb C.
  2. Valentijn

    Valentijn Activity Level: 3

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    Cruises seem like they'd be pretty disabled-friendly. Elevators, lots of food options, room service if needed, plenty of activities on the ship itself, and there's usually a ton of tour options at ports, ranging from very active to sit-onna-bus-and-gawk.

    7 day cruises are pretty cheap ... comparable to what you'd pay to stay at hotels and eat at restaurants. The cruise company I went with before, Holland America, has summer cruises leaving out of Boston, and there's probably others as well. They also had buses taking people from one major city to the embarking port a few hours away in another major city, which was cheap and easy.
    barbc56 likes this.
  3. Shoesies

    Shoesies Senior Member

    We are twice or three time a year, depending on my health cruisers. We do NCL Haven and unless we go to Europe flying from home to FL or NOLA is not bad...takes me a day to get over...is usually a sea day so all good.Once, I went on a cruise in the middle of a relapse...I pray that never happens again. It was brutal. In relapse now and have a paid for cruise beginning of April. Hopefully, I will be better then. Planning on staying on ship, already did this itinerary. Sun and massages and pampering...oh yes!
    barbc56, penny and Valentijn like this.
  4. barbc56

    barbc56 Senior Member

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    Thanks guys, I appreciate the information. The only thing is that I get violently seasick. I deal with balance and dizziness issues. Now if we could just get the same services on land!!

    I am thinking of flying to LA about four hours flight time from where I live but am scared to death. How long has it taken for people to recover from flying.

    Again thanks.
    Barb
  5. Valentijn

    Valentijn Activity Level: 3

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    There's very rarely any wave motion on the cruise ships ... these things are HUGE and have stabilizers and such. In a 10 day trip we only had one stormy day (going to Alaska) where it was noticeable at all. Basically walking along a hallway felt like I was going uphill for two steps ... then downhill for two steps. And rolling all night :p But really, when sitting down it wasn't bothersome.

    And I'm quite prone to getting seasick, but didn't have any nausea from it. It's a very different experience from what you get in a small boat. More like sleeping on a waterbed - not something I enjoy, but it won't make me sick.

    Flying isn't too bad if you can get proper assistance in the airport. Getting a seat at the bulkhead where you have enough leg room to put your feet up can help quite a bit. I didn't have any crash when doing those two things for a 10 hour flight, but had a major crash 10 weeks earlier going the other direction when not getting the appropriate assistance, and my right leg stopped working on the flight for an hour or two.
    barbc56 likes this.
  6. Valentijn

    Valentijn Activity Level: 3

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    We've been really tight on money since I can't work but have to pay off student loans, so haven't been able to go on any cruises ... but Mr Valentijn has a new job with a huge pay raise in March, so we can afford to do stuff again! I REALLY want to go on some cruises again. I live in Europe now, and I've only seen the Netherlands, Belgium, and a very depressing corner of Northern France. I'd love to do a Baltic or Mediterranean cruise and just see everything ... maybe even the Black Sea :D

    It's not quite the way I'd choose to see the world, but it's definitely the best option I've got currently.
    barbc56 and justy like this.
  7. justy

    justy Senior Member

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    Hi Barb, i had also had dreams of travelling, and over the past few years have added a terror of flying to my M.E symptoms (fine when i was younger) I traveled across the Channel by Ferry to France this year and the seasickness was brutal - never had it before, but it was only a small catamaran style fast boat.

    For me, if i could afford it (and i am planning this for the future, well or not) is to travel around the coasts of Europe in a motorhome (driven by my husband - i cant drive more than a few miles) staying at beaches and beach campsties along the way and following the sun (summer in northern france, germany etc and winter in southern spain or Italy etc)

    I always feel a LOT better for sunshine and sea air. Beaches are my favourite place. There are wonderful unspoilt beaches were i live, but unfortunately it is cold most of the year and rains incessantly.

    My husband and i are planning this for when the youngest leaves for university - we are going to rent our house out and go for a year (ish) It's a long wait though - the youngest is not yet 10 - 8(ish) years to go!

    All the best, Justy.

    P.S for me the best way to travel is still by car, if driven. I take a small dose temazepam, a pillow, some coconut water, plenty of food, a flask of tea and we can stop as often as i need for loo breaks etc.
    Nico, barbc56, merylg and 3 others like this.
  8. CallieAndToby

    CallieAndToby Senior Member

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    xanax for flights, works
    barbc56 likes this.
  9. LaurelW

    LaurelW Senior Member

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    Reserve a wheelchair to get to and from the gate--it'll save a huge amount of energy. I also brought a foldable footstool to put my feet up on. Made a huge difference. Of course, this works better if you have a window seat and don't have to move it every time a seatmate wants to get up.
    barbc56, merylg and Valentijn like this.
  10. Shoesies

    Shoesies Senior Member

    When I was in a different phase of life, I once said I would never be a "cruise see the world person" LMBO. It actually worked out quite well before my first relapse to do the Med that way...you see more. Was gone 10-12 hours a day though. Second time I had been ill so I just got two days of off ship time. Now the cruises are for sun and relaxing. My dream is to do a Baltic trip, but I am adjusting my dreams. Congrats on the new job for the Mr. and hope you get to travel some! :)
    barbc56 likes this.
  11. Valentijn

    Valentijn Activity Level: 3

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    Yeah, I think I'd stick to half-day excursions, at most! And probably have some rest days staying on the ship. It's amazing how quiet things are when the ship is at port and everyone is gone.
    barbc56 likes this.
  12. penny

    penny Senior Member

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    I've flown a handful of times since becoming ill and don't have nearly the amount of wonderful info that Valentijn provided (in her thread last fall), but for me:
    • Agreed, it's the walking and standing that is exhausting, it will make a big difference if you can avoid this
    • I've always found one of the worst parts of flying is being packed in so closely with so many people - especially since it became nearly unheard of to have unoccupied seats on a plane. The ME clearly made this worse with the hyper sensitivity to stimuli. But this was helped with earplugs (if you can get a seat within visual sight of the gate it can help to wear these when waiting - there is a lot of noise in an airport), eye mask, getting a window seat (to better ignore all of the people), mint gum (can help mask some ambient odors).
    • If you run cold, and especially if you get a window seat (the AC vents are there), bring stuff to keep you warm (blanket, jacket, fuzzy socks, even those little hand warmer things). The cold can make muscle pain worse and use energy while your body tries to keep warm.
    • Muscle relaxers (a low dose of baclofen) so I get less stiff from not moving, but this might not apply if you don't have muscle pain/cramping.
    • Not carrying much (I guess this is really only relevant if you are walking), but I use a rolling bag and put my purse/small carryon on top of this so I have no weight on my shoulders.
    And in the realm of PURE anecdote, a wheelchair bound family member flew southwest recently and they said they were very helpful (curbside services, wheelchair service, seating at the front of the plane, early boarding), much more so than the other airlines (the more standard ones I believe) they've flown in the last couple of years. Not sure if this was just a one off thing or a general rule, but it can be worth considering if they serve the cities you're flying to/from.
    barbc56 and merylg like this.
  13. Valentijn

    Valentijn Activity Level: 3

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    I almost forgot about that thread on flying! It's at http://forums.phoenixrising.me/index.php?threads/air-travel.19426/

    Wheelchair people should be loaded first on any flight, even if they can walk from the door of the plane to their seat. I wouldn't advise trying to walk from the gate to the seat, since that's the sort of exertion that can really add up over a day of airports/flying/getting to hotels/etc.

    Even without a wheelchair, you can board early when they call for disabled passengers and families with babies. You'll get dirty looks and muttered comments though, because there will always be morons that think boarding early and sitting on the plane longer is SO MUCH FUN :confused: But the alternative is standing in a long slow-moving line, and/or having to stow your luggage halfway across the plane, and/or holding up the line while it takes you a while to stow your luggage and maneuver into the seat. That's less of a problem when you just stay in the wheelchair up to the door of the airplane.
    barbc56, penny and merylg like this.
  14. Purple

    Purple Bundle of purpliness

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    Some low cost airlines where seats are not reserved but allocated on a on first-come first-served basis let people needing assistance come on board of the plane first and prefer it if they sit right in the front - so best seats for legroom.
    barbc56, penny, merylg and 1 other person like this.
  15. barbc56

    barbc56 Senior Member

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    I appreciate all these tips as I'm sure others on the forum do!!! Going to go read the flying thread. Maybe it will give me some confidence about traveling? Time and money will tell!!:)
  16. taniaaust1

    taniaaust1 Senior Member

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    I had a nightmare time flying.. u may find some of my old posts on this on some of the flying threads... including they parked me in a wheelchair somewhere and told me they'd come back to get me and forgot about me.. and then when they came back.. they told me it was too late to get me on the plane!!!
    ....

    Also due to I was so sick..when I got put onto the plane.. after they had boarded me.. an airline decided that I was too sick to fly and tried to kick me off the plane and told me I wouldnt be allowed to fly without a letter from my doctor. So I suggest anyone who is very sick to make sure they have a letter from their doctor with them saying its safe to be flying or you can be kicked off (I think in such a circumstance..they dont even have to refund you thou they would be morally obligued to do so).

    These incidences happened to me at one of the top airlines (Qantas).... Ive had far more happier experiences with the cheaper airlines.
    barbc56 likes this.
  17. Shoesies

    Shoesies Senior Member

    taniaaust1 yes, there was once I was sure they were coming to throw me off the plane. Flying to Europe and I was coughing so much. They warned me if I could not stop coughing I would have to leave the plane.
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  18. barbc56

    barbc56 Senior Member

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    That's horrific!! I never thought of having a doctor's letter. I would think that would also help if you needed immediate medical attention. I had not thought of this.

    I have not had a chance to read the flying thread even though it is at the top of my list. Not for lack of wanting to read it but not enough energy to process any written material right now.

    Barb

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