Health Organization for Pudendal Education

we have a catch 22. we need help from specialists around the world and it hurts to sit to travel to see them.

here's what I've learned about air travel to avoid sitting in flights. Please share any tips you have.

I bring a bag of medical cushions. I go up to the desk where they check you in and let them know in advance that I have a bag of medical cushions. (and here's where I fudge the truth a bit to help them understand) I tell them that I "just had surgery" (whereas it's been 2 years but who are they to understand chronic pain.) so.... " I just had surgery recently and sitting hurts. Then, I ask them if the flight is booked or if there may be extra seats that I might be able to lay on due to my condition. When they reply, no there are unfortunately no extra seats, then I tell them, "Oh, well I'll have to stand in the back during the flight as soon as you take down the "fasten seatbelts" sign". Then I ask "Is there any chance I could get some ice to go inside this empty ziploc bag I've got? It would really help while I have to sit." (or sometimes, I begin the conversation saying that I just had surgery and need some ice for the journey and then proceed with the following steps) I also ask them where they'd prefer I stand (even though I know it's in the back) just so that they don't think I'm a threat to airline safety.

I even have some documents from my doctors saying I have difficulty sitting for reference and some medical files on hand. I tell them I'm traveling to/from specialists.

This same ritual goes on with every step of the journey. I mention this to the first stewardess I see inside the plane, and then manage to get my ice baggie filled with ice in the back. I stand until absolutely necessary, who cares if it looks ridiculous. Then, I sit ONLY until the fasten seatbelt sign goes off. After that, I stand in the back by the restrooms and listen to my ipod.

And I have learned through experience the following also. Do not wear all black. DO put on makeup and dress nice, but comfortably. Like I'll wear a dress over leggings w/comfy cute shoes and bring crocs to stand in later, after I've made my good impression, if necessary.

I in particular worry a lot if they think I might be up to no good, because I look arabic. Can you imagine? Looking arabic, and then wanting to do odd things like stand in the plane! I fear the day they'll make me sit, but until then... I have my strategy.

Although last time going to colorado (for a special event) I made a major no-no. I wore a floor length black sundress with a scarf tied around my neck, didn't put on makeup... and... happen to look ethnic. on the flight in, when the pilot announced they'd had a delay waiting to taxi & the seatbelt sign was ON, I stood up and went back to ask the stewardess if I could stand until the plane actually needed to take off because my pelvis hurt from surgery. She called the pilot and told me it was breaking federal law and looked incredibly freaked out by me.... so I hurried back to my seat. I didn't really realize what was wrong until I wore the same outfit w/no makeup flying back from colorado to orange county. They were in an orange alert w/signs, loud alerts in the airport, etc. Out of the blue, security singled me out and asked me if everything was ok w/me...then when I turned around to drink my water bottle and throw it away, he asked me again. oh no, I looked suspicious cause I was ethnic in white people land! I quickly proceeded to the bathroom and changed into the cutest outfit I had in my bag with a clingy shirt/dress and leggings and put on my makeup and sunglasses on my head and tried to look like the beach chick that I am! after that everything went smoothly. whew.

uh... life sucks sometimes.

Wow. Flying while ethnic sounds even more difficult than flying in pain. I feel sorry for all of the people who can't just change how they look.

it's ok, celeste. I think the pne part is really harder than looking ethnic. I've never been searched or anything. I just fear it because I am aware that I look ethnic. coming back from my surgery in france, I got put in the "special" line for re-entering the US with all the people who had middle eastern noses for a 2nd check that other people didn't have to do. and they were looking most of the people's bags (but not mine!). that was insulting. but the pne part really is harder.

This is great information, pianogal. Thanks for this.

Thanks Pianogal for this information,
I too have a huge file of letters from doctors which I have shown on many times to explain to airline staff about my difficulty about sitting.
I remember once on route to Nantes via Gatwick ( London) when flying with BA they insisted I sat in the front of the plane....I of course stood up for as much as I could and the staff offered that I could do the announcements ......I declined of course!!!!
Standing at the back is preferable....I have been know to sleep standing up leaning on seats....a bit like a horse!!!

I alwasy take my cushions on every flight and have never encountered too many problems, except one time when i walked to the toilet and a staff member said She can walk......hello......yes I can but not very far!!! Once I produced my Disability blue badge which is recognised in Europe as a sign of disabled persons....the attitude changed.

Its not easy to travel, regardless of what clothes you wear, make up etc....you dont look sick so its not taken seriously.
As a person with a Stimulator the protocol going through security is that you have a pacemaker.....so I get funny looks as the security people have asked me what age I am....????? The association is that only older people have a pacemaker......but at times I have shown my Stimulator ID cards and then the staff have realised that I am genuine.....its not Easy!!!!!

When traveling with my husband or daughter I always book a window seat and an aisle seat, leaving the centre seat vacant. As we check in we are told that there's no guarantee that the middle seat won't be allocated if the plane is full.
Most times we have been fortunate and teh centre seat is free for me to get my legs up. I do like the idea of some flights that now have Sky beds. cheaper than business class and just a little bit more than economy class.
I'll be looking into this on my next long haul flight. Especially the overnight ones. In Australia we call the midnight flights 'The Red Eye' flight.

I was once told I'd need to remove my cushion for take off and landing. Now when I sit on it I hide it a bit so the steward can't see it poking out the side of the seat. I find nowadays I can actually sit a bit longer and only feel the need to get up now and again to go to the toilet. On my flight to France from Australia for surgery, I took my pillow and blanket and locked myself in the toilet. I cried for hours in there. I told my husband not to worry about me as it was the only place I could feel less pain.

Catherine

I call ahead and let the airline know I am (disabled). I am allowed to get on the plain first and take the first seat so I have extra leg room since I stand or try to lay down for my flights. I have been allowed to carry on many pillows - I stuff many into one pillow case and then pull them out when I board to prop myself up. Also, I've been allowed to carry on instant ice-packs. You break them and they stay cold for an hour so I take many on each flight. I've also bought 2 seats. When my stitches were still in I bought 2 seats because I was terrified if I sat I would break them.

Good luck to all of you who have to fly. It is always a long painful day, but we always seem to get through it.

Kathy

Kathy,
Isn't getting on the plane first torture? To me, I try to get on there last...so telling them I have a disability means being punished in my mind with undue pain of having to be there more. Or do you just stand in there until the last second?

and how do you know you were born with your pain? Did you have pain as a child too? I had showed minor inclinations of symptoms from age 7 on, and it's increased but my first papsmere really got the ball rolling painwise. Were you constipated as a child and do you think that could have created your situation?

I have to share my most recent flying experience. Somehow I can laugh at it now but it was a disaster. We had to urgently fly out west because my brother got ill quickly and sadly he ended up dying. But, we made reservations to get on the next plane and fly cross country for a 3 hour flight to be at his bedside. We bough first class tickets so I would be more comfortable- thinking more leg room, I could truly recline a lot. Well, who @#%! knew that for a 3 hour flight we'd get stuck on a tiny 50 seater commuter flight! THey still took our 1600 dollars, but what was called first class was a joke. We did get the bulkhead seats which were tiny, no extra room. So, lucky I'm little- I ended up sitting on the floor of the bulkhead stretched out that way. But boy.. we were thinking we splurged on first class- stressed out about my brother and we just wanted to get there in decent shape. But now, I can laugh at the calamity of the travel bait / switch... but apparently more airlines are using dinky planes to fly long distances so beware of that. Not all first class sections are created =. I rarely travel at all, so I'm not savvy about that these days. So, that's my recent story about travel. I managed ok on the floor- took some extra meds, and knitted, and walked around a lot. The rest is a total blur.

JUDITH

Poor Judith,
I'm so sorry you had to experience that, especially in a difficult time. Bravo for seeing the humor.
For future reference... I've found seatguru.com to be helpful. When booking your flight, before you book, it will tell you on most booking sites what airplane type is being flown. Then, you can go to seatguru.com to get exact explanations of every seat on that type of plane. Although in the case of bait and switch, not much you can do... but usually that doesn't happen.

About those instant ice packs recommended by Kat, they feel great but boy I'm not doing that again! I already look middle eastern and am painfully aware to try to look as un ethnic as possible to avoid people thinking I'm a terror alert for wanting to STAND in the back of the plane. Well, I took one instant ice pack on a plane, and folllowed the directions.... shake, then pop the middle part.... it made a giant sound like a gunshot in the plane! I can't believe i didn't get stuck in the airport jail or something! My husband was like.... "let me get this straight... you took a substance that starts out as a powder and transforms into a liquid onto a plane, and shook it and popped it to make a liquid WHILE on a plane?" lol But THANK YOU nonetheless... I drove from Orange County to LA with one of those inserted into the gap in my IC cushion, and I felt pain free the ENTIRE TIME! I haven't felt that in 8 years. so thank you!