Traveling long distances with ME/CFS or FM – most of us avoid it at all costs! It’s just too much for our bodies to handle!
I had the very same opinion because I was (and still am) largely housebound due to Post Viral Fatigue Syndrome (also known as ME/CFS). But as a result, I had forfeited seeing my beloved family (who live abroad) for four long years. So recently, I decided to ‘bite the bullet’ and go. Post Viral Fatigue Syndrome or not.
I had a lovely time there, but the voyage there and back raised quite a few issues for me as a sufferer of Post Viral Fatigue Syndrome.
When it comes to ME/CFS no one sufferer has the same experience as the next. For a start, you may suffer from this condition less or more severely than I do. You probably also experience a different mix of symptoms. But there are a few things you can bear in mind if you do plan on making a long trip:
1) Rest adequately beforehand.
This might mean not exerting yourself mentally or physically for a number of days or even weeks beforehand – easier said than done, I know. But bear in mind that resting is a BIG priority PRE-trip.
2) Plan your trip.
Leave LOTS of time in-between train, bus or plane times so that you don’t have to rush. **Over-estimate** the amount of time it will take you. That way, if you get there early you can just sit and rest instead of rushing and stressing, which will only make you feel more weak and ill.
3) Get help.
If you’re making a long trip then it’s advisable that you ask someone (like a relative or friend) to accompany you there and back. Ideally, this would be someone who understands your condition and how it affects you. If you have trouble walking (or if this wears you out too much usually) then consider asking someone from the train or plane company to meet you with a wheelchair. Most large commercial companies seem to offer this service, but you usually have to tell them in advance. You might also consider using a walking stick. Anything to help you get there in one piece, right?
4) Don’t rush.
Pack slowly. Don’t leave it until the last minute! I had an open suitcase in my bedroom in which I put things as I thought of them. I also made a checklist for the morning of the trip, so that I didn’t forget the things that I needed to pack after using them that morning (like toothbrush, toothpaste, tablets, etc).
5) Pack light!
If you’re going on a short trip, then maybe you can get away with not packing any luggage at all?
—– SIDE NOTE —– If you’re traveling to a different time zone, consider taking some earplugs and a light-blocking sleep mask with you, just in case you need to sleep during the day. —– SIDE NOTE —–
6) Don’t forget to pack your medicines, vitamins, and supplements!
Don’t make the mistake of not packing enough. Count out how many tablets you’ll need just to make sure.
7) Warn the people you’re going to be staying with about your needs.
This maybe your family, friends or the hotel manager. Let them know about your sleeping habits and your dietary needs. Is there anything you *can’t* eat or drink? Caffeine or dairy, for example? Should they get some special food or drink in like say soya milk?
8) Bring a book on ME/CFS with you just in case the people you stay with are interested in your condition.
If you have ME/CFS then I really recommend Lynn Michell’s book ‘Shattered’, because it really explains what it’s like to live with the condition. AND it packs a punch – just in case you face any skepticism while you’re there! No need to start explaining yourself – just hand them the book. 😉
9) Sensory overload.
When you suffer from ME/CFS, visual and aural stimuli can be too overwhelming for your brain to process adequately. This is especially true when you’re traveling…
… the noise of the train, bus or plane, the chatting people, the fast-moving countryside outside, the throng of other travelers…
All of this can play havoc with your brain and can end up making you feel even *more* exhausted, and your brain even *more* foggy!
There’s not much you can do about this. But say you’re on a train for example – if the fast-moving countryside is making you feel dizzy, then try to avoid looking out the window. Close your eyes if you have to, or wear a sleep mask. If you find that you’re getting dizzy and tired when you’re in a busy corridor full of commuters in the subway, for example, stop and face the wall for a few seconds to regroup and regain your clarity and balance.
10) Wear some magnetic insoles.
I had made it a point to see my Nutritionist/ Kinesiologist before I left for my trip abroad. She tested me with all the supplements I took daily and found that the ‘Pure Synergy’ superfood powder really raised my vital force (see point 11 below).
But perhaps even more astounding was the magnetic insoles she gave me – they raised my vital force so much that at first, it literally felt like I was standing on a power pod! I could even feel a subtle tingling sensation in my legs!
I wore my magnetic insoles on the trip and I have to say that I *did* feel more energized! It’s a very subtle feeling and after an hour or so of using them, the tingling went away. You may or may not have the same sensations when you first try them – depending on how severe your ME/CFS is and how susceptible you are to external forces. But they’re well worth a try. I now make it a point to wear my magnetic insoles whenever I have to venture outside and now that I know how much they help me, I most certainly wouldn’t be without them.
11) Perhaps most importantly, pack some nourishing food and supplements specifically for your voyage.
It’s important to eat small amounts regularly especially when you travel. It’s not a good idea to eat sugary foods or anything containing caffeine (including coffee, tea, sweets or chocolate) because although that may pep you up for the first few minutes, they are likely to make you feel a lot worse in the long term.
I took a few of Dr. Gillian McKeith’s ‘Living Food Energy Bars’ with me – I always keep a spare one in my handbag for emergencies anyway. Nuts are also a great idea when you’re traveling (if you’re not allergic to them that is).
I also took some of that amazing ‘Pure Synergy’ superfood powder and mixed it in with some cooled herbal tea in a small bottle. No sugar. No caffeine.
It was my energy pep-up drink – and I swigged it all the way back on my voyage. It did the trick.