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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.
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.