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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?

More Somersaults in the Air: the fun of flying with POTS and ME/CFS Part 2

7 Sep
Approaching Landing, flying over the Thames River. Photo by Jess B

Approaching Landing, flying over the Thames River. Photo by Jess B

This post continues the tale of when Me, Mr B and my ME/CFS and POTS took to the skies. If you missed part 1 read it here.

Of course wonderful things never last forever and our holiday had to end and we had to fly home.

The departure time of our flight home had been changed from early afternoon to 7.30 pm. This was less than helpful. We had specifically stayed an extra night in France in order to get a flight time that wasn’t inhospitable to ME/CFS. Not too early in the morning when my pain levels are always worse or too late when my fatigue would be worse. Air France had other ideas. So by the time it got to check in time at the airport Mr B and I and our trusty travel companions ME/CFS and POTS had already had a long day of basically killing time before our flight. I’d rested as much as I could but I was still exhausted by early evening. The lovely owners of the B&B that we had stayed at ( Le Manoir de Laumeil if you’re ever in the area look it up) kindly allowed us to use their facilities after room check out time which was a life saver. Without their comfy sofas and shaded sun loungers to relax on I would have been in a whole world of trouble. As it was my trouble was bad enough.

Brive airport has been open for two years but still the security staff seemed highly bemused and perplexed by a girl in a wheelchair and how to get her through the body scanner. There was lots of muttering and looks cast in our direction. After we’d finally successfully traversed security, we then had passport control to contend with. At a ‘normal’ airport this takes a matter of seconds, a quick cursory glance at the picture in your passport compared with an even quicker glance at your face usually sees you moved on through to departures. And to give Brive Customs Officers their due, this is what they did…after 20 minutes of us waiting trapped between security and passport control whilst the two customs officer went off outside for a fag break. Yes really. No replacement officer so we just got to wait, not having a clue what was going on. Thank goodness I had my wheelchair to sit in.

Le Manoir du Laumeil B&B. Photo by Jess B.

Le Manoir du Laumeil B&B. Photo by Jess B.

Once that hurdle was passed and we made it through to the cast iron shed type room that Brive airport calls the departure lounge. A cafe? Shops? You’ve got to be kidding, a vending machine was the only option for drinks never mind food.  Needless to say all the waiting around did nothing for my fatigue and pain, both reaching peak levels by the time boarding commenced. I’ve flown a few times now since being ill and requiring wheelchair assistance has always previously meant that me and my little entourage of chronic illnesses and Mr B of course, have got to board the plane first. This means no queuing up the airplane steps, lots of time for my wheelchair to be safely stowed before take off, time to get settled on the plane, for me to rest before take off etc. Gotta love the little Frenchies, we were kept back and were literally the last people to board the flight. We were sat in the departure lounge waiting and waiting, not allowed to cross the 100 yards (max) of tarmac between the departure gate and the plane until an ‘assistant’ came to push me. I’m sure there is some health and safety law that dictated this action but seriously Mr B could easily have pushed me and given we were the only flight to depart Brive airport that day (yes really) I think we could have safely made it to the plane without getting run down by an errant plane or loading vehicle. And Mr B would probably not have nearly tipped me out as the assistant tried to do as we crossed the ridge onto the runway. But no we just got to wait. With no one telling us what was really going on. I was incredibly fatigued by this point and the stress of waiting was making things much worse. Of course we didn’t get left behind but little misses ME/CFS and POTS did not know that and my anxiety, pain and fatigue were ramping up and up.

I was so exhausted by the time I made it into my seat on the plane I was in tears. My body hurt so much. And if I thought ME/CFS and POTS misbehaved on the outbound flight well, it was nothing compared to their antics on the flight home. As we taxied and took off into the air I thought my head was going to explode the pressure inside it seemed so great. Again wave after wave of nausea hit me as the insides of my head did somersaults as if it was in an Olympic gymnastics display going for gold. Tears streamed down my face as I tried to breathe deeply and remain (haha reclaim more like) calm. There was a little girl sat across the aisle from us who kept looking at me, as if to say why is that grown up lady crying? My thoughts exactly. Not a high (pun in tended) point of my life.

On the Ground, Phew! Photo by Jess B.

On the Ground, Phew! Photo by Jess B.

Once we were airborne things settled down for me. Though the heavy leg and ankle pain continued full throttle. But of course then came our descent and landing. Don’t think I need to elaborate on how fun that was. I don’t think I’ve ever been so pleased to get off an airplane before.

I really don’t want to put anyone off flying because of my experiences. The boost I got from going on holiday made the pain of the flights worth it. And when I flew to the USA back in April it was so much better and easier on me. Yes my body hurt and I was very fatigued but there was no dizziness, somersaults or nausea. A walk in the park compared to the flights I’ve described in this and my last post. But it was only after that trip in April that I developed significant POTS symptoms. And it was my POTS symptoms that acted up so much, and not ME/CFS, that made my flights to and from France so much fun. That’s my theory anyway.

POTS is still pretty new to me and whilst I’ve got a barrage of strategies to cope with ME/CFS and travel – which I will share in my next post, so stay tuned for that – POTS is still a bit (okay a lot) of an unknown quantity. I’m hoping my upcoming specialist appointment will give me some answers.

If you missed part 1 of my tale of flying with POTS and ME/CFS read it here.

Have you flown with POTS, ME/CFS or another chronic illness? What’s your experience of wheelchair assistance at airports?

Somersaults in the Air: the fun of flying with POTS and ME/CFS Part 1

5 Sep
High above the clouds. Photo by Jess B.

High above the clouds. Photo by Jess B.

As regular readers of my blog will know I recently went on holiday to France with Mr B and my family.

Whilst my parents and sister took the ferry and drove down across France to reach our holiday destination, Mr B and I flew from London City, a small airport just 15 minutes by car from our flat. Long car journeys + ME/CFS = one big fat ugly mess and as I’d flown earlier in the year, on a much longer transatlantic flight and not suffered too much during the actual flight, flying to France  was our much preferred option.

We thought that with London City being so close to home and such a small airport it would be fairly easy (all things being relative) on me and my ME/CFS. We took my wheelchair which was a huge help saving my little legs and depleted energy reserves for more fun holiday pursuits. Mr B pushed me – think comedy of him pushing me and trying to manoeuvre our two suitcases into the airport terminal, wide load is a fitting description as we struggled to get inside! But we made it, checked in and all was going smoothly. Once we were inside the terminal we were happily pounced on by wheelchair assistance people who took us through security (no standing in queues for us) through to departures. Come boarding time another helpful assistant appeared as if from nowhere and took us through a maze of ‘off stage’ corridors down to a waiting area separate from the general mellay of other travellers waiting to board out flight. We were the first to board the flight, me being pushed across the tarmac by our kind assistant who then safely stowed my wheelchair in the hold.

So far so good. London City airport is fab for wheelchair assistance, literally couldn’t fault them.

It all went a bit pear shaped once we were on the flight, or to be more precise once we started to taxi and lift off into the air. At this point little miss ME/CFS, or I think more accurately little miss POTS went into a rage. She didn’t like the take off experience and as a result neither did I. I was wearing my (uber sexy) compression stockings and had my feet propped up on my bag under the seat in front – lucky I have short legs – so the leg pain wasn’t too bad. What was bad was the goings on in my head. Light-headed and dizzy doesn’t begin to describe it. I felt extremely nauseous and as if my brain and contents of my skull were doing somersaults inside my head. It felt like my brain was lifting up and suddenly dropping back down. You know that feeling that happens in your stomach when you go over a drop or bump in the road too fast, you lose your stomach for a second. Yes well that was happening inside my head. Repeatedly. Over and over again as we ascended into the sky. Not at all nice.

Approaching land, time to descend. Photo by Jess B.

Approaching land, time to descend. Photo by Jess B.

Once we were up in the air high above the clouds at a stable height the somersaults calmed down and I was able to pop my headphones on and listen to a relaxation track for the rest of the short (1 hr 30 mins) flight.

But what goes up must come down…the descent was equally fun filled for me. Each drop in height as we descended into Brive airport resulted in me feeling like my head was going to lift off momentarily and then drop heavily back down on to my neck. The feeling of pressure on top of me made it exhausting and painful to keep my neck and shoulders upright. I just wanted to curl forwards into a ball and land as quickly as possible.

It’s a stretch to call Brive airport an airport. It is tiny. More like a large shed which just happens to have a strip of tarmac outside where the odd plane lands. But their wheelchair assistance was great met us at the bottom of the plane steps and took us through immigration. Sadly French assistants are more polite / less pushy than their British counterparts and we didn’t jump the queue (I was exhausted by this point so really would have liked to have done) but they located my own wheelchair (with some rudimentary French on my part ‘ou est ma chaise roullante’… a year spent living in Paris learning French during my gap year put to good use) and we were off on our holidays.

To Be Continued… I will talk about our flight home in my next post so stay tuned for more fun antics in the air with ME/CFS and POTS.

If you want to read about our wonderful holiday in France you can do so here, here and here.

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