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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plane travel when severe?

Discussion in 'General ME/CFS Discussion' started by juliaa, Jun 25, 2017.

  1. juliaa

    juliaa

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    i'm needing to move in with my parents in florida--i just don't have enough support/assistance where i am. plus, i'm going to go to klimas' INIM clinic. and so i'll need to travel from chicago to florida.

    thanks to a post by sushi, i found the google site search (http://forums.phoenixrising.me/index.php?pages/google-search/ )

    ...and so i have been looking at other threads about plane travel, but most people posting on those seem much more functional than i am!

    i'm mostly bedridden, and can get out occasionally with the help of another person, a reclining wheelchair, and benadryl or dramamine (i don't get typical motion sickness, but motion makes me worse). that stuff seems to help keep crashes from lasting too long--it's made a difference from feeling i couldn't get out at all to knowing i'll pay for brief outings, but be ok. (i still barely get out though!)

    it scares me to consider all this--i haven't travelled more than 30 miles in the past 10 years! i'm mostly in bed and need assistance for daily living stuff--help with showering, needing food prepared for me/next to me, stuff like that. everyday life is so tiring, and the thought of travelling is a lot. but i really need more help/support than i'm getting now, and some medical guidance, more than my current home-visit doctors who don't know what to do with me.

    how do you handle travelling long distances when you're severe? i don't have a lot of help for trying to build up tolerance for motion, but i'm trying. i got pushed a couple of blocks in my wheelchair the other day to a park--was out for about an hour. i crashed after but got saline afterwards, which helped. (i have a home visit saline nurse, and was already set up.)

    i figure i'll take benadryl or dramamine, and klonopin to help my brain be less reactive to stimuli. plus earplugs and sound muffs, of course. and face masks, both for eyes and for breathing. i'm going to be loading up with electrolytes too, of course. what i use now is liquid concentrate electrolyte stuff (lyteshow), so i'm going to try some powders. (recommendations welcome--i recently saw a rec for a powder called drip drop, which sounds readily available.)

    my parents would fly up to accompany me. my mom could handle luggage hassles, while my dad wheels me through the airport to the gate. maybe a night time flight, so things are quieter/calmer at the airport. (and then i'll be sleepy in addition to the sedatives, which might be good?) i'm going to have to pace a LOT and ask for a whole lot of help.

    i'd go thru the airport in my reclining wheelchair. and i could lay in my parents' laps in the plane, with some sort of bladder-protection garment since i won't be strong enough to get up to use the bathroom. my mom found something about southwest airlines being good for people with disabilities, which seems promising. i called them and it turns out that FAA safety regs state that your seatbelt has to be on, your seat has to be upright, tray table in place for takeoff and landing. BUT there's nothing about the actual passengers having to be upright. so i could have the seatbelt on and still sprawl in my parents' laps. i want to find the actual FAA thing that says that so i can have it in writing, but no luck looking on their website.

    anyway, i'd love any feedback/ideas. this is going to be a big change, and the travelling is a lot to take on. i'll stay at hotels near the chicago and tampa airports for a time on each end, to keep those complications minimal.
     
    erin, Joh, MeSci and 2 others like this.
  2. Alvin2

    Alvin2 If humans were rational...

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    Let the airline know your issues and see what they can accommodate, i believe by federal law they are required to accommodate where possible.
    Glad your not traveling alone, would a car trip be easier though, a few hours or more a day, crash a hotel overnight then keep going? Not sure who can drive you though.
     
  3. juliaa

    juliaa

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    we were looking into RVs but renting them has turned out more complicated than i expected, and it's a loooong way. i don't think we could take the sort of time i'd need. we talked about it a lot and it got to seeming less and less possible, though it's still a consideration.

    plane travel is 2 1/2 hrs., plus airport hassle. i'd be laying down in the back of a car for a 2 hr drive at some point once we're in florida. but that wouldn't have to be until i was feeling better.
     
    Last edited: Jun 26, 2017
  4. Sushi

    Sushi Senior Member Albuquerque

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    Are there direct flights? (I guess there would be from Chicago to Miami.) If so you could ask the airline (with a letter from your doctor) if they would upgrade you to a business or first class seat that reclines flat. Seems like you could make a good case for it. There are also networks of Angel Flights where corporate jets will carry medical passengers for free. The regulations vary though. With a corporate jet, you wouldn't have to go through the whole airport stress. Good luck with this.
     
  5. Alvin2

    Alvin2 If humans were rational...

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    at 2 1/2 hours plus airport times flying is probably easier on you instead of a couple days on the road.
     
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  6. Valentijn

    Valentijn Senior Member

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    @juliaa - You can call the airline and request seats behind the bulkhead. Even if someone else has them reserved, disabled passengers typically get priority. Then you have a lot of floor space to put something to prop up your feet, or even to wedge your feet up against the wall. And the extra floor space behind the bulkhead also offers the option for you to lie on the floor if that's more comfortable, or your parents to sit on the floor once you're in the air, as well as getting in and out of your aisle more easily.

    If you can't fully lie down during take off, hopefully you can at least get your feet up and maybe partially lay your upper body on a parent's lap until you're in the air. Actual take-off is pretty short. You also might be able to sit crossed legged or with your feet on the seat for a bit. Purchasing an extra adjacent seat might help a lot as well, depending on the layout of the aircraft.

    A very late or early flight is an excellent idea, and should make it easier for them to accommodate you. But different flights may have different seat arrangements that also make things easier or harder, so that's something you could look into as well. Additionally, some planes have a disabled bathroom, where your parents might be able to get in to help you if necessary.
     
    Last edited: Jun 26, 2017
    Jennifer J, juliaa and MeSci like this.
  7. juliaa

    juliaa

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    i've looked up angel flights and ironically, i seem to be too sick for them! they require that you're able to walk and can sit up for the duration of the flight, from what i can tell.
     
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  8. jimells

    jimells Senior Member

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    If I needed to travel from Chicago to Florida I would consider Amtrak. The sleeper cars have special compartments for disabled people, complete with shower. I made a cross-country trip about ten years ago, and it was much less stress and hassle than airplanes. A sleeper compartment is considered first class, and Amtrak has a very nice first-class lounge in Chicago - I was able to lay down on a couch!

    The sleepers are expensive, but worth the money.
     
    Valentijn, Sushi, erin and 2 others like this.
  9. Silencio

    Silencio Senior Member

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    Even though you have your own wheelchair, I would order wheelchair assistance in the airport through airline. They can get you through security faster and on and off the plane,into taxi queues etc. I've found them to be really good.
     
    Valentijn, Sushi, erin and 2 others like this.
  10. Basilico

    Basilico Florida

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    Do you know if you are at all sensitive to air pressure changes? My husband and his mother get terrible ear pain when they fly. There are these cool ear plugs called 'Ear Planes" that keep the pressure stabilized in your head. They don't get pain when they use them. If this isn't an issue for you, then don't bother with them, but I know with this illness there are a lot of hypersensitivities. Maybe worth thinking about whether it's worth it to have them on hand, just in case? (they're not expensive).
     
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  11. juliaa

    juliaa

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    this is a good idea to consider--i'm not typically sensitive, but it might be one of those things where it's there but less noticeable, and we all know how that stuff adds up. (i used to think i wasn't sound sensitive, and now i very clearly am but looking back, i was subtly sensitive in the past too.)

    looks like there's 3 different pressure-releasing earplug brands on amazon. they block noise less than regular earplugs, but it's something i'll have to think about. i'd have to get the child sized ones--i've found that smaller earplugs are much easier on me and don't give me headaches like regular adult-sized earplugs. (i'm not petite, but my ears are i guess?)

    thanks for the suggestion--i never would have known about this possibility!
     
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  12. Basilico

    Basilico Florida

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    The thing with ear planes is that you only need to wear them during take off and landing - that's when the pressure changes cause a problem (at least for the people I know who have this issue). Once you are at cruising altitude, you can switch to regular earphones/earplugs.

    I didn't even realize there were other brands - I've only seen Ear Planes and the generics in the pharmacy.

    Glad to know it wasn't a pointless suggestion!
     
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