Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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Discussion in 'Lifestyle Management' started by redhummingbird, Aug 15, 2013.

  1. redhummingbird


    There are so many categories I'm not sure where to post things.

    I need to take a trip (family member is in very, very poor health). It's about a 16 or 18 hour car ride. I'm trying to figure out a way to travel that won't jar my nervous system or make me crash (if that's possible).

    I think in the years I've had ME I've only traveled once by laying down in the back of a van.

    This time I'm on my own so I'm trying to figure out whether to fly or take amtrak or bus?

    What has been people's experiences?
  2. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    I cant nowdays use public transport but once I caught a plane and they tried to kick me off the plane as they could see I was quite ill (dangling head, tremoring and spasms) and they got concerned if I was safe to to fly without a doctors letter saying it was ok for me to do so. They wouldnt just take my word and were going to get me forcefully removed from the plane when I refused to get off due to them not going to allow me to fly without a doctors letter (and apparently if one gets kicked off a plane in such a situation, they dont even have to refund you!!).

    That being said flying has benefits over a bus being faster. also airports have wheelchairs one can borrow and be pushed onto the plane while another carries your luggage etc. (I ended up being given a seat where no one was sitting along side, so I could have my legs up). I suggest to fly rather then trying to do a 16-18hr bus trip.
    Clodomir and Valentijn like this.
  3. rosie26

    rosie26 Senior Member

    I would fly, the quicker you get there the quicker you can have a lay down and rest. That is what I would do. I could not do a long bus, train ride, just too long and drawn out and uncomfortable when feeling ill. x
    Plum likes this.
  4. SickOfSickness

    SickOfSickness Senior Member

    Fly but only if you are OK with flying. Don't if you have anxiety about airports or planes. Also don't fly if you will need to carry luggage more than a little. As was already posted, it is best if you're willing to use a wheelchair or those motorized vehicles to transport you. Those add to the time you need to be at the airport, because you have to wait for their help.

    Flying is the only way I could it without crashing, but I would probably crash from flying too. Particularly if there will be a change of planes, if there are delays, and if you have no help to and from the airport.
  5. SOC

    SOC Senior Member

    In most, probably all, US airports you can get wheelchair assistance from curbside to plane and from plane to your land transport of choice. They will help you with your luggage, help you through security, stop at bathrooms and restaurants if you want, and so on. Plan to "tip" according to how much you want them to do. Tell your airline when you book your tickets that you will need wheelchair assistance to and from the plane. Airlines are used to doing this for the elderly and disabled.

    You can be pretty disconnected -- headphones in, eyes closed -- through most of the airport, although they'll want you to be more aware during security. Just make sure you look aware and competent as you get on the plane so they don't think you're too ill to fly. Also, most airlines won't let you sit in an exit row seat if you have assistance booked. The assumption is that you are not competent to handle the exit in an emergency.

    If you are noise-sensitive, invest in a good pair of noise canceling headphones. They don't eliminate the sound entirely, but they definitely take that "noise" edge off.
    rosie26 and Valentijn like this.
  6. Plum

    Plum Senior Member

    I would fly. I would also try to make stresses as little as possible. I would get a prescription for something to calm me and make me relaxed when on the plane. Depending on how far I lived from airport I would consider travelling to near airport and staying the night in a motel and then flying next day.

    I would also take plenty of nutritious food with me so I wasn't hungry and didn't need to reply on rubbish.
  7. peggy-sue


    I'd agree with everything everybody has said - flying would be the easiest way to cope.

    It's really hard being stuck in one position the whole time on a long journey - your back muscles "go" from having to maintain yourself stitting up, you get cramps, it's just exhausting. (I've just spent two days sitting in a car, getting to family and friends)
    rosie26 likes this.
  8. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

    However you go, be sure to stay well hydrated!
    SOC likes this.
  9. vamah

    vamah Senior Member

    Washington , DC area
    I wouldn't consider that long a car ride for myself, but I couldn't tolerate long car trips even before I was sick. The advantage to driving would be that you would be completely in control of your itinerary and not stuck in a plane seat, even if its for a much shorter period of time. When my sister was pregnant and had terrible nausea the whole pregnancy, it was easier for her to drive halfway across the county than be stuck on a plane feeling sick because she could stop whenever she needed to and take the trip at her own pace. Even if you had to do the drive over a few days, the hotel costs might not be any more than a plane ticket.
    Sparrowhawk likes this.

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