Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Need travel tips fast

Hi all,
I'm a newbie here. I'm a 40 year old female and was diagnosed with AS about 18 months ago. I'm American but live in Switzerland and will soon be moving to Scotland.
I don't travel well. I get extremly stiff, painful and fatiqued.
However, we have the misfortune to have to travel to the US to get our British Visas since the British Embassey here in Switzerland is booked through October. So we will be traveling to the states (10 hour flight) stay for 5 days, fly back. I will have two days to finish packing before the movers come; then we fly to Scotland that weekend. I also have a daughter and 5 cats to care for. My husband just doesn't understand (can't/ won't ?) that my body gives up way before my mind wants to.
I'm worried about being sick in a new and stange country by myself ( hubby will be in Switzerland on and off until Oct) and dealing with a new medical system.
Any tips on how to avoid the pain and fatique of traveling will be greatly appreiated.
PS: We fly out the 12th of August.
Thanks & Smiles, whoopsadaisy

Hello and welcome to Kickas! Sounds like you are a world traveler... hope your AS does well with all the moving.

For the airplane... I like Emergency row or aisle seats. Emergency row has more leg room and aisles allow you more opportunity to get up and walk around. I will be taking my 2nd 10 hour flight in less than a month and do not look forward to the flight... a bit much for me.

Any issues with prescriptions and being in a new country? NOt sure if overlap between European countries..

Take care,

Tim

If possible and the budget allows it, go for first class...or do aisle seats... easier to get out if need be. I was on a 6 hr flight and I traded my window seat with a lady opposite me so she can be with her daughter and grandbaby in my row and i took her asile seat. She was grateful! and I was glad to sit in an asile seat. I also like first class .. sat in it before and it was very roomy.

Wow, I can't believe you have to fly all of the way to the United States to get your visas. That's crazy!

I haven't taken a long flight in years, so I don't have a lot of helpful information. I'm taking a flight myself in October that will be 5 or 6 hours in the air, but I was able to use mileage to upgrade to first class. I'm hoping that will help.

About 30 - 35 years ago my, then husband, was in the army stationed in Germany and I took a couple of flights back and forth. They were 10 hour flights, but that was back before I was having trouble with AS.

Good luck, I hope you enjoy your new home and your new country. This could be a great experience for you. I really enjoyed the three years I spent in Germany.

Hi Hugh here,
I too have to travel from the UK to the US regularly.
I find the only way to survive it is the following which does involve swallowing some pride.
I always ask for assistance from the airport. This always means being pout in a wheel chair. You get pout on the plain first and get seated and settled hopefully before the mob move in. You also get help with customs bags etc. You will not have to walk those rushed distances getting banged and gosseled about in the rush. The other thing is try as hard as you can to get a bulkhead seats. The best way is to attempt to book in advance and always be there when check in opens. This is more difficult if you have to change plains. try to sound the way you are scared and apprehensive about the flight. this always works better then being pushy. These seats are supposed to be allocated for disabled and nursing children. this is rarely the case. most airlines say you have to book them on the day on a first come first served basis. I have been there 2 hours before check in, first in line and they have all gone. If this happens try not to get angry explain your situation and if possible cry (yes cry). try to get every ones name you deal with and make good eye contact. Have a plain seating chart with you and when you get your seat number check it with the chart before you leave the desk. There are sometimes two or more seating options on big plains print them all off from the airline web pages.If all goes well when you reach the states you will set there till all have left the plain then get wheel chair assistance past all the que to immigration. make use the hostess knows your disability's and that you will be moving around the plain often and make them aware that there should be a wheel chair waiting for you when you arrive. If you are traveling with anyone they will get to coma with you do not let them split you up.
Sorry if I am scaring you but all this works (hopefully) and it is worth it. I look at it like I run on battery's once they are used up I'm done! So anything that helps use it.
Sorry if I am repeating other posts I have not had time to read them all.
PS what part of Scotland are you moving to I lived there for 12 years.
I hope you get on OK and let me know if you want any more details or help, that is if I have been of any.
Bi Hugh

I hear that!
Here in the states they have these hating pads that are not electric! They wrap around a joint or area, and heat for 8 hours. You can pick them up in the drug store, here that is. I hope they have them there! If not let me know and we can post ya some.
They make travel possible again.
They are pricey here, but well worth it.
Best of luck to you,
Bitybuffy

Hi W'daisy (fun name) - Welcome to the Forum. Don't know IF I can add that much to what has already been posted, but have done several long haul flights, 16 to 18 hours with upto 3 flight changes, and three of those flights were midst flare!

Flight - tips:

I requested an *isle seat, not emergency, as they keep the emergency for real able bodied an don't think I fit into that category. Two flights I was also throwing a wretched very swollen and painful knee, so I further requested left hand isle seats so that I could straighten my knee.

Then I requested assistance at the airports to help with luggage. I was brought a wheelchair - one of those electric go-cart thinggies would have been more appropriate - perforce, we put the luggage in the wheel chair and I walked! Suggest you ask for one of those elec buggie vehicles, then it can take ALL of you plus your luggage: think you need to be pretty insistant on getting the elec buggy: walk with a stick, put your arm in a sling, anything...

For my body comfort, I took with me a small down pillow for my back plus for my neck a 'memory foam' neck pillow.

During the flight I ensured that I stood up and walked about several times. Made a nice niche for myself at an exit door and did exercises. Leg and stretch exercises; transferring weight from foot to foot, bending and arm lift exercises. No one took ANY notice... Only a couple of lfight attendants asking me if I were alright, explaianed that IF I didn't do my 'stretches' my body would seize and I might not be able to move (eek).

I drank plenty of water and also took with me a snack - was not sure what the airlines were going to come up with (Glad I took a snack!)

Relocating

Scotland is fine. Don't know where you are going to be located, perhaps Benbecula? (Might even possibly relocate to Benbecula - unless I choose Brittany). Edinburgh has an excellent hospital with a good orthopaedic surgeon - who is an American. Glasgow has a good hospital and also Aberdeen. St Thomases London, Leeds, Manchester (Hope Hospital), Leicester and Nottingham are centers of medical excellence. Bath hospital has a well recommended AS unit. You can get private referrels to any of these hospitals. Otherwise, NHS? Will depend on what is available in your catchment area.

Meds, pretty much the same throughout Europe. Except for the DMARDS, which are only just now coming on-stream in the UK. Still diff to getta hold of, and on the NHS? Forget it. Will hardly stand a chance. Privately, no problem, especially IF already on them. Be prepared for many of the doctors and rheumys in the UK being pretty clueless about AS and all the problems attendant on being a spondy.

This link might be useful:

http://www.rheumatology.org.uk/link/patient_support_links/sitemap

This link will be invaluable - choosing your NHS hospital, how to and what hospitals cover the area in which you live - one has a choice nowadays, the 'Patient's Charter': http://www.nhs.uk/

Here's another one, hospitals and information - finding a specialist:
http://www.specialistinfo.com/directory.php

Here's a useful site - on arthritis, leaky gut syndrome - good informative site (you may not sufffer from this, but was in my 'bag' of info!):
http://arthritis.about.com/od/diet/a/leakygut.htm

Thinnk that is pretty much all I can come up with on a general note. do have many links for alternatives, herbs, natural alaternatives and where to get them. When you have relocated, and settled down, then please don';t hesitate to e-mail me if you would like any further information along those lines.

Have a great flight, don't exhaust yourself in the thores of packing up and - take care.

Molly C
Keeping on Keeping on (naturally)

Leg room usually isn't a problem for me. I'm only 5' 2 and I'm traveling with my hubby and daughter so I let my tall husband have the aisle seat and my 9 year old daughter gets stuffed in between us.
I'm hoping the medication won't be a problem. It wasn't too back when we moved from the states to Swizerland but I'm not sure about the UK.
Thanks so much. Smiles, whoopsadaisy

I was hoping for business class but my husbands company won't pay for them. I'm really dreading this flight. We will only be in the states 5 days, it's basically to get our Visa's from the British Embassy. After that I'll be home for 3 days in which I have to pack up most of my household goods (just found that out)for the movers to send to UK. We will fly that weekend to move to Scotland which is another 6 hour jounrney with flight/ flight changes/ waiting and driving. My daughter will start school the following week and my husband will be back in Switzerland.
I'm just hoping I'll be able to get out of bed. I'm so scared this is going to cause a major flare.
whoopsadaisy

Hi backatcha - glad you were able to pick up my post (time wise). I am 5'1" (an going down - was 5'5-1/4"!). Heigh-Ho

Yes, take on board, daughter between mom and dad. Was thinking more of your getting up, climbing over 'people' an their (naturally) sighing - ho-hum.

Have a very good trip, and again, 'Welcome' to the UK. Take care -

Molly C

Keeping on Keeping on