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Need Tips for International Travel

Discussion in 'General ME/CFS Discussion' started by 2Cor.12:9, Jul 28, 2015.

  1. 2Cor.12:9

    2Cor.12:9 Senior Member

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    Hi - (I think I posted this in the wrong place the first time)

    Has anyone done a long overseas trip when they were feeling awful? I've been okay traveling within the US by air or car when I'm not having a full blown relapse as long as I pace carefully.

    But I've never traveled abroad before and must accompany my husband to Africa for his work later this year.
    I've been having a pretty bad relapse for several months and am mostly in bed right now but am hoping it will pass by the time I have to go.

    It's about a 40 hr flight from the west coast of the US so we plan to break it up and stopover to rest in London for a couple of days.

    I'm really nervous though!

    Once I get there I should be able to rest though - I hope!! eeks!

    Any travel tips for long flights to strange places would be very much appreciated!

    (I've had this since 1986)
     
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  2. charles shepherd

    charles shepherd Senior Member

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    Hi

    We are just about to publish a new MEA 'To Whom It May Concern' letter that people can use when it comes to approaching airlines, airports, train companies and accommodation suppliers in relation to the health and disability problems that are caused by ME/CFS.

    The proper headed paper version will be up on the MEA website tomorrow or Thursday but I'll pop the final draft on here for information.

    We also have an MEA information leaflet that covers all aspects of overseas travel:

    http://www.meassociation.org.uk/shop/management-leaflets/vaccinations-travel/
     
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  3. charles shepherd

    charles shepherd Senior Member

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    New MEA TWIMC letter re travelling with ME/CFS

    Draft - Work in Progress

    TWIMC: TRAVELLING WITH ME/CFS


    The ME Association


    7 Apollo Office Court

    Radclive Road

    Gawcott

    Bucks MK18 4DF


    Tel: 01280 818968

    Email: administration@meassociation.org.uk

    Website: www.meassociation.org.uk


    ____________________________________


    TO WHOM IT MAY CONCERN



    Re: Assistance, aids and adaptions that may be required by people with ME/CFS (myalgic encephalomyeltis/chronic fatigue syndrome) in relation to all aspects of travel and the provision of accommodation


    I have been asked to provide some information and guidance on ME/CFS in relation to travel and accommodation.


    This is designed to ensure that people and organisations who are involved in transportation and the provision of accommodation are aware of the health and disability problems that this illness can cause.


    This guidance also covers what can be done by the travel industry to try and ensure that appropriate assistance and/or aids is/are available where and when required.


    What is ME/CFS?


    People with ME/CFS have a number of symptoms that affect their ability to cope with various aspects of travel, as well as the type of accommodation that may be required at the end of the journey.


    The following ME/CFS symptoms are particularly important in relation to travel and accommodation:


    · Activity induced muscle fatigue, weakness and pain. This means that while most people with ME/CFS are be able to walk, they may not be able to cope with walking longer distances to, for example, an airport departure lounge, or be able to walk the length of a long platform at a railway station. They may therefore require temporary assistance in the form of a wheelchair or driver operated buggy. People with more severe ME/CFS may require wheelchair assistance for most or all of the time when they are travelling.


    · Cognitive dysfunction, meaning that they have problems with concentration, short-term memory, word finding ability and information processing. This can cause problems with understanding information and instructions, especially in busy or unfamiliar surroundings.


    · Problems with balance. This means that a person with ME/CFS will require somewhere to sit down. If more severely affected, they may require somewhere to lie down.


    · Orthostatic intolerance and hypotension (low blood pressure). This means that people with ME/CFS are unable to stand for long periods, especially in hot weather. This may be linked to a pronounced fall in blood pressure on standing, which then results in a fainting episode. As a result, they will again require a place where they can sit or lie down if necessary.


    · Sensitivity to loud noise and/or bright lights - both of which are likely to be a problem in a busy transport terminal.


    · Sensitivity to chemicals.


    · Problems with temperature control, including sensitivity to both hot and cold external temperatures. In hot climates, rooms with air conditioning should therefore be available.



    What can the travel industry do to help?


    Based on feedback from people with ME/CFS, who have both good and bad experience of travel, the list below contains some of the most important practical ways in which the travel industry can help people with the disability and health problems associated with ME/CFS cope with travel.


    One important point here is that having a disability is not necessarily the same as having a health problem. In the case of ME/CFS, most people have what is normally regarded as a disability in relation to mobility but they also have health problems, as listed below, which affect their ability to cope with travel and the requirements they may then have in relation to suitable accommodation.



    Airports, airlines, train/coach stations and train/coach companies


    · Providing reliable, easy to understand and up to date information about access, facilities and assistance at airports, coach and train stations. This should occur on location websites, by phone, and by post. By phone and by post is important because some people with disabilities do not use the internet.


    · Providing contact details for enquiries about how and where to book and collect/make use of any mobility aids - eg a wheelchair or staff driven buggy that may be required on a journey at both the departure and arrival points.


    · Having a member of staff at a specific and easy to find location who can deal with any queries.


    · Making sure people with disabilities know where to go for assistance and collection of wheelchairs etc.


    · Having a low counter where people in wheelchairs are able to deal with any paperwork and make proper eye contact with a member of staff.


    · Providing a quiet room with disabled facilities at airports and large train/coach stations.


    · Providing designated/priority seating areas at the points of departure and arrival, as well as on the method of transport.


    · Allowing early or priority boarding on planes, trains and coaches.


    Accomodation


    · Making it clear in brochures and in website information where accommodation is likely to be noisy, or where there may be problems relating to access for people with disabilities or mobility problems. The introduction of some form of disabled friendly rating system for hotels would be useful.


    · Providing ground floor accommodation, or good access via a lift to bedrooms on upper floors.


    · Making sure that bedrooms designed for people with disabilities have wide enough doors to cope with wheelchairs and that any information is place at eye height for someone in a wheelchair.


    · Provision of bedrooms with disabled toilet and bathroom facilities for more severely affected travellers. This should include being able to provide information before booking about bedrooms with disabled access, bath and shower facilities.


    · Avoiding the use of chemical products, air fresheners in particular, in bedrooms.



    I would be happy to answer queries relating to any aspect of this information.


    Feedback from the travel industry is always welcome because helping people with disabilities and health problems to travel and find suitable accommodation should be a two way process.



    Dr Charles Shepherd

    Hon Medical Adviser, ME Association


    July 2015
     
  4. leela

    leela Slow But Hopeful

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    Even if you do not overtly have MCS, I highly recommend taking precautions for the very toxic airplane air.
    I use an "I can Breathe" mask with activated charcoal filter (usually double up on the filters for planes.) You can also get a piece of activated charcoal
    "blanket" (it's very thin) and sew two bedsheets together to put it in and wrap around yourself. These things help so much! It's already asking so much of your body to do such a long journey, but adding the chemical load to the pot is just over the top for me.

    Also, having Y.E.S. remedy can be helpful, along with vitamin C to take every few hours (if you tolerate it). Bring your own healthy snacks--more than you think you might need--in case of unexpected delays.

    Arrange for a wheelchair at all airports. Have $5 or equivalent bills to tip the "pushers".

    No matter how tired you are when you get in from the airport, shower and wash your hair. Which reminds me, since you are already the big weirdo in the wheelchair with the face mask, you might want to tuck all your hair up in a hat for the duration of the travels.

    It's been so long since I've travelled that's all I've got for now. Take good care of yourself and bon voyage :)
     
  5. Sushi

    Sushi Senior Member Albuquerque

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    barbc56 and 2Cor.12:9 like this.
  6. 2Cor.12:9

    2Cor.12:9 Senior Member

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    Dr. Charles Shepherd, Thank you so for all of this information. I really appreciate it!
     
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  7. 2Cor.12:9

    2Cor.12:9 Senior Member

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    Leela - Thank you for all the great tips! I've never had a problem flying across the US - but this will be a different animal I'm sure!
     
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  8. daisybell

    daisybell Senior Member

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    Beg, borrow ,steal or bribe your way to a business class ticket!!! And make use of the wheelchair and buggy options at the airport.....
    Seriously though, if at all possible, business class travel makes a huge difference if you can fund it somehow. Nice quiet lounges with showers etc, no queues, and being able to lie down on the plane, all mean that you can arrive the other end without feeling too awful...
    I save air points like mad just so I can upgrade....
     
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  9. 2Cor.12:9

    2Cor.12:9 Senior Member

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    Sushi - Thanks so much for the link. I will check it out!
     
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  10. 2Cor.12:9

    2Cor.12:9 Senior Member

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    DaisyBell - Oh, how I would love to go business class, but the prices from the west coast of the US to South Africa Eastern Cape would take all of our profit! ha! I have looked into the different airlines that have more leg room and good reviews. I will keep trying to figure out a way to go biz class though. Thank you!
     
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  11. Sushi

    Sushi Senior Member Albuquerque

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    Hi, I opened a chat with you, I don't know if you can see it at the bottom of the page. I have traveled from the US to South Africa many times and might have some tips.
     
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  12. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

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    Me too! :hug:
     
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  13. Valentijn

    Valentijn WE ARE KINA

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    Delta has an "economy comfort" section, which offers more leg room. The seats in the center right behind a wall have a ton of leg room, and I can easily stretch my legs out completely and prop them up on my carry-on. There's also enough room to sit or curl up on the floor there if I really need to, so long as I'm sitting next to someone I know :D

    Anyhow, even if Delta isn't an option, other airlines probably have a similar option. It's approximately US$100 more for a one-way trip from the west coast to Europe, but definitely worth it. If there aren't any good seats available on the flight you need, you can call the airline and explain your relevant disability (low blood/pulse pressure, etc), and they should be willing to move other people around to accommodate you.

    The other major thing is to arrange for disability (wheelchair) assistance when you reserve your tickets. This can usually be done online, after making the purchase. And when you get to the airport, insist on using the wheelchair the entire time. They might try to make you walk through security, etc, and it can be tempting since it's a short distance, but it always involves standing a lot longer than expected, and then waiting for the wheelchair to catch up with you as well. Doing this repeatedly can get pretty hellish.

    If your husband is doing the wheelchair pushing, he can even take you into womens' bathrooms, which can be useful since it can be quite a hike from the entrance to the first available stall. But basically stay in a wheelchair as much as possible, from the moment you enter an airport until you get to the door of the actual airplane. And once on the airplane, if you're sitting in the front of the economy section (don't sit in the back, it's a HUGE distance to walk) and if the closest bathroom is at the rear of first class, tell the flight attendant that you are disabled and cannot walk far, and ask if it's okay if you use the first class toilet. They'll ask the lead flight attendant, but the answer has always been "yes" in my experience.
     
  14. perchance dreamer

    perchance dreamer Senior Member

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    There are 2 things that help me immensely when I fly. One is a small neck pillow, and the other is a self-inflating back cushion:

    http://www.amazon.com/Bucky-Minnie-...2740&sr=8-2&keywords=bucky travel neck pillow

    http://www.relaxtheback.com/self-inflating-back-rest.html

    I love the small neck pillow and also use it at home. Most neck pillows like this are too thick for me, but this is just right.

    The back cushion is so handy when traveling because you can roll it up when it's not in use. To inflate it you just open the valve. I always take it when I go to a restaurant because so many have uncomfortable chairs.
     
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  15. 2Cor.12:9

    2Cor.12:9 Senior Member

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  16. lnester7

    lnester7 Seven

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    - Do not carry anything, make sure to have a waist type bag. I tie a neck pillow to body.
    - Pack powder electrolyte for airplain (I use pedyalite, it will mess up your OI).
    - Wear HRM so you can monitor how you are doing and drink if you need to.
    - If you are in OI meds ask doc if you can up the dose during trip(I double them).
    - Wear compression waist high (comfortable pressure). Comfortable cloths and shoes that you can get in and out easily.
    - In your waist pack: electrolyte, earplugs that block high noises, a total dark mask. Meds and snack high in fast calories (high protein like bar).If you do well on b12 under the tongue keep a couple of those and use.
    - Buy A LOT iof water for the electrolyte before boarding.
    - Lay flat before boarding, in the floor of airport w all gear on (blacking out mask, earplugs.....).
    - Put feet up if you can while sitting up in plain. Walk to bathroom every so often pumping your legs.
    - I always pack a SUPER light jacket like thingy that I will use as a blanket so the lighter,longer and thiner the best.
    - Use disability help around airport.
    - A few days before, UP the electrolyte intake and be w the most possible water in the body without side effects.
    - lay flat as much a few days before so all the prep work will happen a week before. days before trip Just pack last minute necessaties.

    Do not assume you will find meds in trip so take all you need there (ask insurance overrride for vacation). If special diet pack those too.
     
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  17. 2Cor.12:9

    2Cor.12:9 Senior Member

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    Thank you! What is HRM?
     
  18. Valentijn

    Valentijn WE ARE KINA

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    Heart rate monitor.
     
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  19. SickOfSickness

    SickOfSickness Senior Member

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    To pass security quicker, I memorize and follow all the rules and don't wear anything with metal. I also have to tell them I cannot take off my shoes for medical reasons. I had to learn the hard way that it's too hard taking them off.

    I agree it is much better if you sit in the wheelchair through security. Otherwise I always have the security people pressuring me to lift/move bags and bins because I look healthy.

    I would try hard not to move or lift bags, even bending over to put them under a seat can make you sore.

    Get an aisle seat because I found it too hard when people expect you to climb over them, for bathroom trips. Some people stand up and move out of the way and some don't, especially if they are sleeping or tired.

    Allow extra time when you're getting them to bring a wheelchair. Sometimes you have to wait.

    Try not to socialize much to conserve energy.

    If you have a longer layover, you can pay for airport lounge access.

    Request a special meal if you have food sensitivities or problems.
     
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  20. Sushi

    Sushi Senior Member Albuquerque

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    Alternatively, many big airports have chapels--hardly anyone goes there. They are quiet, the light is soft, you can often lie down there.
     

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