Sunflower Goes on a Trip

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Robin Mead

Sunflower has taken several trips since she first became ill with Myalgic Encephalomyelitis and Chronic Fatigue Syndrome.

She’s come with some rather clever and rather brilliant ideas to help everything go smoothly, and to arrive (more or less) intact and still enjoy the trip.

If you have ME or CFS and you feel at all tempted not to take Sunflower’s advice, please take a look here: Potential Dangers of Exercise and Activity

SUNFLOWER GOES ON A TRIP!

I have traveled to visit many people since my CFS/ME began four years ago. Initially, I did those trips in a state of denial.

“I can do this! I’m fine! It’s all good! This is good for me! It’s only an hour flight!” 

I have learned so much through doing that! 

No matter how I am feeling, I now recognize that I am disabled and my illness requires that I utilize assistance especially when I travel. 

Airline travel sucks all the energy out of you before you even realize it. So here’s what I do and recommend.

GETTING READY

✈️ Pack at least 2-3 days prior to departure. And then leave it – don’t add, subtract or rearrange. 

✈️ Use the 2-3 or more days prior to departure to do nothing but rest. No errands. Limit computer and “business” type activities. 

✈️ If your body can handle supplements well, try EmergenC or Airborne. You can start drinking 2+ of those per day a few days before your trip, especially your travel days, and every day of your trip. 

✈️  Ask someone to pack for you. The first time I asked my neighbor to please pack my suitcase — it helped tremendously! Just be sure to watch as they pack so you can give input and see where everything goes. 

BEFORE YOU FLY

✈️ Call the airlines directly. If you look on their website they will have a contact number listed for disability services – usually at the bottom of the page.

✈️ The ideas in this post are for the US. Some of them may apply in other countries. 

✈️ Request “curbside to gate” wheelchair assistance at both your departing airports. 

✈️ Request “pre-boarding due to disability” for all your flights – departing and returning.

✈️ If your airline charges a fee for checked baggage, request that they waive the fee because you are unable to manage your luggage. 

✈️ If you are opposed to checking your suitcase then specify that you are “unable to manage your carry on and need full assistance” with that. 

✈️ Select a seat – Work with the representative to find the best seat location for your needs

✈️ If the airline charges a fee to choose your seat in advance, and then request that they waive the fee. Trust me… they have to. It’s the law. 

✈️ Ask the rep: “Is there is anything else that their airline can offer to help your trip to be as comfortable as possible?” Those are the magic words. 

✈️  I have spoken at length to the airline disability department and they have been so helpful. They have even told me in detail what every airport that I am going through is like.

✈️ Tip: Airlines can not legally ask you what your disability is and they can not ask for “proof” so let that worry go. You do not need a doctor’s notes or anything. 

THE BIG DAY

✈️ When you arrive at the airport, you just have to tell the sky cap or ticket counter person your confirmation number and that you require disability assist and they provide everything.

✈️ Make sure you arrive early because sometimes you have to wait for personnel to become available to transfer you.

✈️ On your airline travel days, no matter how you feel, USE ALL OF THE SERVICES. Wheelchair assist will expedite TSA checks for you. They will manage your bags for you. 

✈️ Make sure to have the assistant stop at the bathroom just before your gate and go in and use it so that hopefully you will not have to wrestle with the airplane bathroom. Do the same when you land – have them stop at the bathroom before taking you to baggage claim and the curb because all of that and the drive to your daughters house added to the flight time can add up. It also gives you a chance to walk a little bit. 

✈️ Take an empty water bottle in your purse/bag. Fill it after you go through security. Hydration is important!

✈️ You stay in the wheelchair right up to the TSA person. If you are able to stand you can walk through the metal detector. If you are not able to stand, they do a check of your person that is dignified and private. They lift any of your belongings for you onto the conveyor. You do not have to take off your shoes. Also, anyone traveling with you stays with you the entire time.

✈️ Once at the gate, they put you in the pre-boarding line. You and anyone traveling with you will be pre-boarded. Also, if the plane has open seating, they will make certain that your traveling companions are sitting with you.

✈️ Once you get to your gate, always inquire about an upgrade to first class, business class or extra leg room aisle. If you choose those seats at the time you purchase your tickets they are very expensive. But by the time travelers arrive at the gate, the airlines want to fill those seats and often offer them at a greatly reduced discount. I upgraded to first class for only an additional $90 at the gate once. And let me tell you, the extra room, more comfortable seat and extra attention was so worth it!

✈️ I highly recommend you sit in the aisle seat.

✈️ When you land, the other passengers will get off. If you need assistance walking off of the plane they have transfer chairs. Otherwise, the wheelchair will be waiting for you when you get off the plane and they will take you to get your baggage and to the curb.

✈️ More tips on how to use wheelchair services: How to Wheel Around an Airport

YOU’RE THERE! 

✈️ When you arrive at your destination put self-care as a priority over socializing and “catching up”. 

✈️ Go for a slow, short walk preferably outside — the air and the movement will help prevent what I call “travel crud” from setting in. 

✈️ Continue to drink water but also have a cup of tea or other soothing beverage. 

✈️ Lay down. No matter what is going on lay down for 30, 60, 90 minutes in a dark, quiet room. Listen to some soothing meditation sounds. Or if it is 9pm or later – go to bed for the night. 

✈️ Take any meds, supplements, brush and floss. Self-care. 

✈️ If you go out, use a wheelchair. Let your friend or family push you.

Recently, I visited a dear friend in Arizona for two weeks. I told her in advance I did not want to do a thing. Each day when I woke, I did my routine to determine how I was feeling. Most days we nibbled on food, watched movies, shopped on the computer.

But two times during that time I went to the casino with her!!! I mustered up all of my energy and said “heck yeah!” and went out expecting to be crashed. Yes, I did crash but I had fun and it was worth it – we have to live!


Marjolign’s Airport Survival Tips

✈️ To limit tiredness from processing unfamiliar and often loud noises: I use a noise-cancelling set of earplugs. This technology cancels out all mechanical sounds while still allows you to hear the spoken words and announcements, sometimes even clearer! I use it in cars, trains, airplanes and even in the house. The one I use has the ability to be used as regular headphones for music and in-flight entertainment, and I can play soothing sounds or listen to audiobooks without disturbing others as well, while not being distracted by my surroundings and getting less tired.

✈️ I wore long compression socks to prevent bloodclots and noticed I had less swelling of my lower limbs and even felt better at staying upright for longer. I use them a lot now, in cars and for any day I have to stand up or walk. I am considering using them every day.

✈️ I dried some vegetables (sweet pepper, kale, zucchini) to eat during my last trip. Doesn’t weigh anything. I need vegetables and dried fruit and nuts for energy, and I can’t do airline food.

✈️ Medication, supplements, and extra food are all allowed in addition to regular carry-on. Check out individual airlines’ regulations before booking.

✈️ Download airport floor plans to familiarize yourself beforehand.


MORE TIPS

✈️ More great tips for using airline wheelchair services: How to Wheel Around an Airport

✈️ Sunflower goes a few more places: Sunflower Goes to a Concert, a Theater, and a Football Game

✈️  Airlines will allow you to bring an animal on board with you if it is an emotional support animal or psychiatric service animal and you have a doctor’s letter.

✈️  Some airlines will allow you to get a free additional seat if you have a medical need for an extra seat.

✈️  Some airlines offer a discounted ticket if to a companion if you need a caretaker to travel with you because of your disability. Please check the individual airline’s policy.

✈️ “I wear a cotton scarf so I can cover my mouth and nose for smells and my eyes to block out light. I also carry medical masks in case I need to block out smells or reduce risk of catching something on the plane.” – Colleen Steckel

Please share your tips in the comments below.

 

11 thoughts on “Sunflower Goes on a Trip”

  1. Thanks for this! I have insomnia real bad and it is worse in a new place. So I am up most of the night and sleep till noon. Most people go to bed much earlier and get up early and their noise just doing normal stuff wakes me up. I am not a happy camper if I don’t get enough sleep. So I haven’t stayed at a friend’s house in a long time. People just don’t get not being able to fall asleep. I wear ear plugs all time but I still hear things. I pet sit so I do stay at other people’s houses but it’s just me and their dog. Any suggestions?

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  2. Thank you for your quick response. Thank you for posting a great helpful blog. I am still getting used to being on ssdi. Many times it seems like i am getting worse not better being on it. Yet feel to disabled to get off it. Even though at times i want to try.

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  3. Thank you for the great tips! Your artwork posted on this site is beautiful.

    How do airplane trips affect ssdi? Does traveling effect ssdi? I have the same disability 24/7 and when ever i travel there is always someone with me. I have an invisible disability. That can be noticed by many bathroom trips, if someone speaks to me for a while. I need an isle seat every time. I get very anxious if i dont show up to the airport early. Since i’ve been on ssdi i am scared to travel or take trips, in fear that its not allowed. Even though the disability is still there. Is there anything someone needs to be aware of traveling on ssdi?

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    1. Hi Vicki,

      Great questions.

      I am not aware of any reasons why a person on disability couldn’t ride in an airplane. You are not in jail 🙂

      Social Security does not monitor your travel, but if you talk to your doctor about traveling, this may appear in your medical records.

      Also, if you move to a new state, you should notify Social Security as soon as possible.

      If you are leaving the country for more than 30 days, this could affect SSI payments.

      You’ve done a good job explaining your situation above, so if your doctor asks you about travel you can explain as you did above.

      Hope it goes well for you.

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  4. My best strategy: Buy two seats. The airline must refund the cost of one if the aircraft is not full for the flight. Fly at a time the flight is least likely to be full. Beware of sharing too many details. When the flight attendant asks, “Has your doctor cleared you for air travel?” Have an answer ready so that you can get the help you need without getting kicked off the flight.

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  5. Wow – I cannot imagine being able to even contemplate travel with the severity of my ME (mostly bedbound since 2000), but will be SO HAPPY for any MEer who is less-disabled-enough to use these excellent tips – fingers crossed for you all!

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  6. In addition to your excellent tips for travelling I want to add another one:
    To limit tiredness from processing unfamiliar and often loud noises: I use a noise-cancelling set of earplugs. This technology cancels out all mechanical sounds while still allows you to hear the spoken words and announcements, sometimes even clearer! I use it in cars, trains, airplanes and even in the house. The one I use has the ability to be used as regular headphones for music and in-flight entertainment, and I can play soothing sounds or listen to audiobooks etc without disturbing others as well, while not being distracted by my surroundings and getting less tired.
    All earplugs and headphones used to hurt my ears and I could only use them for short periods. The ones I have now I can use for 5 hours and probably more, as they came in three sizes and are very soft.

    Liked by 2 people

      1. Thank you! I bought Bose. Love them, worth every penny. They cancelled out the noise from an early carnaval’s music-night last night. When the sound of the central heating gets annoying, or my airpurifyer, I use them too!

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