Flying with ME/CFS: My Top Tips

9 Sep
Taking to the skies. Photo by Jess B.

Taking to the skies. Photo by Jess B.

Having relived my flying experiences in my last two posts (read them here and here) you may think I would recommend not flying if you have ME/CFS and / or POTS.

Would I fly again with my health as it is? Would I dare take little misses POTS and ME/CFS on an aeroplane again?

To be honest when I got off that plane back at London City airport, and for several days after, my stance was, I am not flying until I am well. I can’t go through that again. But time is a wonderful healer (or perhaps just a wonderful aid to forgetfulness) and now I would say yes I would fly again. Am I stupid? Perhaps.

My GP said to me before I flew to Philly back in April, by doing things such as going on holiday, not only am I giving myself a huge mental boost, a big injection of happy hormones and smiles, but I am also telling my body that I am in control. I am not letting my chronic illness rule my being and control my life. Of course the pests of POTS and ME/CFS do have a pretty large say in what I do and how I do things at the moment. But with time and some planning, flying and travel with POTS  and/or ME/CFS in my experience is possible. Does the end justify the means? I always try and keep that in mind. In the case of our family holiday in France or a trip to visit my sister in the US, do I wish I hadn’t done these? Hell NO! The happy happy memories of both trips far outweigh the effort of planning and consequences of making the trip. It is important to acknowledge that there were consequences for my health from those trips but for me the suffering was worth it.

By now you will know that I am not one to let ME/CFS and POTS beat me. I will win! And making these trips was a proverbial sticking two fingers up at these pesky illnesses.

So how to make flying / travel with ME/CFS and POTS that bit more doable, that bit less damaging, that bit more bearable?

Here are my top tips:

  • To Do List -first things first, make a list of all the prep for your trip you need to do and plan out when you’re going to do it. I know that sounds incredibly boring and obsessive but the less you push your body before your trip the better you’ll cope when it comes to travel day.
  • Packing –  I start way in advance of departure day so I can do bits gradually and not end up having to ‘race’ (I wish) about at the last moment.
  • Rest – I try to leave a good few days clear both before and after a travel day to rest. This allows my body to prepare the best it can and to recover.
  • Doctor – consult your doctor about your travel plans. My GP gave me a ‘To Whom It  May Concern’ letter detailing my illnesses with a certified list of all the medications I am on.
  • Insurance – make sure you have sufficient travel insurance cover with a good health provision. Declare your illnesses to the insurer, last thing you want is to invalidate your cover should you need to make a claim.
  • Airport Wheel Chair Assistance – ring your airline and book wheelchair assistance. If you have your own wheelchair your airline is obligated to carry it free of charge. They will ask for your chair’s weight and measurements (estimates are fine). In my experience (at Heathrow, Philadelphia, London City and Brive airports) I have been able to stay in my own wheelchair until the plane door, at which point my wheelchair was stowed in the cabin (on bigger flights) or in the hold. An assistant has pushed me through to the departure lounge which avoids a possible lengthy wait at security. On landing we were met with my wheelchair at the plane door with an assistant to push me through the terminal. If you do not have your own chair, still book wheelchair assistance. Airports are required to provide wheelchair assistance. This includes a chair and an assistant if you are traveling alone. You won’t be asked why you require it, just whether you can walk up a short flight of steps to get to the plane door if necessary. If stairs are a problem they have ‘high loaders’ that will lift you up to the plane and if you can’t walk down the plane aisle they have special narrow chairs to push you down. The first time I used a wheelchair because of my illness was at an airport (London Gatwick) and I felt so incredibly self conscious; especially as we rode on the electric cart to get to the gate. But try to put that out of your head. You know why you need assistance, forget everyone else.
  • Food – book a special meal if you have a restricted diet. In my experience this varies between airlines. For example Air Canada I was able to have a gluten free vegan meal but British Airways do not offer combined special meals, i.e. I could have a gluten free or a vegan but not a gluten free vegetarian. Take lots of snacks so that if the meal turns out to be something you can’t eat you won’t go hungry – on one flight they gave my meal to someone else by mistake which meant there was nothing I could safely eat. I was very grateful for my supply of home made granola bars, nuts and raisins, rice cakes, carrot sticks etc.
  • Medication – pack all your medications in your carry on bag just in case your checked bag ends up in Hawaii and you’re in Australia…Take extra medication, just in case you get significantly delayed (remember the Ash cloud?) I took pain killers before my flights to numb my body a bit and took them as often as safely I could on the flight (remember time zone changes when taking medication). Take a stash with you, you may need more than usual. I did.
  • Rest Routine – on a longer flight I try to to keep roughly to my routine of rests and activity i.e. I don’t read for longer than I normally can manage without getting fatigued, ditto with watching TV, I do regular rest meditations as I would at home, if not more frequently. On a short flight I simply put my headphones on and listen to a meditation, trying to rest as much as possible.
  • Headphones – I have noise cancellation headphones which are amazing, pricey but amazing. Mine were a gift, buy the best headphones you can afford (or smile nicely at your relatives, Christmas is coming after all). Or use ear plugs, anything to dampen down the noise of the aircraft and people around you.
  • Stay warm – planes are cold, take a blind fold, socks and blanket.
  • Pillow – I have a memory foam neck pillow (£15 Amazon) which is a wonderful support, far better than those ‘pillows’ you get given in economy class on flights.
  • Photo by Jess B.

    Photo by Jess B.

    Tiger balm is wonderful at easing pain and easily  rubbed into aching joints or muscles on a flight.

  • Water – once through security stock up on some bottled water for the flight.
  • Melatonin – if your flight is long enough to get some sleep, consider taking melatonin as you board the plane to help induce sleep, this worked a treat for me and helped me cope so much better with the return night flight from Philadelphia in April.
  • D-Ribose – my secret weapon. D-Ribose is a naturally occurring sugar in our blood that is part of the ATP energy production in our body’s cells. I take a D-Ribose supplement to keep my energy a bit more stable. I increased my dose slightly on travel days and this helped so much (always consult your doctor before starting any new medication or supplement).
  • Flight Time – choose your flight time carefully if you can – choose a time that suits your body. For me this would be a flight early afternoon. Mornings my pain is worse and late afternoon, evenings my fatigue is worse. Of course you’re stuck at the hands of the airline on this and it won’t always go to plan (Air France unhelpfully pushed our return flight back by 5 hours this summer)
  • Break your journey – if you do not live near the airport, consider staying in an airport hotel night before. We did this before we flew to Philly. It meant I got a lie in and didn’t have to rush the morning of the flight.

This may seem like a mammoth list. But don’t be put off. If you want to travel with ME/CFS or POTS or another chronic illness being prepared is key. Little things really do make a big difference. It will still be hard on your body but if you think that’s worth it to make the trip then DO IT! GO! But do it in a prepared, well thought out and measured way. Good Luck!

Although this list is pretty long, I’m bound not to have covered everything, anyone got any other top tips for travelling with chronic illness you’d like to add?


9 Responses to “Flying with ME/CFS: My Top Tips”

  1. Jumping_Jenny_444 September 9, 2013 at 12:11 pm #

    Those were some great tips! I will definitely keep those in mind when I’m ready to travel. 🙂

  2. thehomeschoolingdoctor September 9, 2013 at 1:08 pm #

    Great list! This has to be so helpful for someone with symptoms/diagnoses like yours!

    • myjourneythrume September 10, 2013 at 10:07 am #

      Thank you Terri, I hope they can help anyone in my situation and similar.

  3. Diana - Chronic Chic September 10, 2013 at 5:21 pm #

    Great list! My parents have been asking me to take a trip to their condo in Florida, but I’ve been so worried about the airport/plane situation. This helps a lot.

    For some reason I feel silly requesting wheel chair assistance, even though I have difficulty standing and walking for long periods of time.

    • myjourneythrume September 10, 2013 at 7:48 pm #

      I felt silly and uncomfortable getting wheelchair assistance too. I totally relate to what you mean there. But honestly it is so worth it and you get easier with it over time. I hope you make the trip to Florida.

  4. Hayley-Eszti September 10, 2013 at 9:04 pm #

    I recently wrote a post on my blog about me experience flying with M.E. The airport assistance was a life saver and made travelling for me possible. Luckily I had put most of your points into action but there’s a few I didn’t think about which I will do next time! Flying with a chronic illness can be very daunting and even put a person off but with the right steps and precautions it can be possible! Take care hun x Hayley-Eszti x

    • myjourneythrume September 10, 2013 at 9:07 pm #

      Awh thanks Hayley, I will definitely check out your post. I think you’re so right, it can be daunting but it doesn’t have to be. Hope you’re having a good week Jx

    • myjourneythrume September 10, 2013 at 9:22 pm #

      I just tried on commenting on your blog, twice, but it didn’t work 😦 so I thought I’d post my comment here instead: you look gorgeous in the pics of your cousins wedding, I know how hard that day will have been for you (I’ve been to two weddings since being sick and I know how long those days are) and I’m so happy you got to be there.

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