M.E. and long haul ­ the road less travelled

By Fiona Agombar

The best moment of my life occurred last March. The Taj Mahal was more wonderful than I could ever 
have imagined ­ like a giant wedding cake studded with precious jewels. Tears rolled down my cheeks. 
But I wasn't just crying because it was so beautiful. I have had M.E. for 14 years ­ and for the first five 
of those I was severely affected. I never thought I would be well enough to travel to India but earlier this 
year I did just that.

Fifteen years ago, my mother and I made a pact. One day we would travel to India together and see the 
Taj Mahal. Then, after a hefty bout of glandular fever I ended up crippled with M.E. For some time I was 
in a wheelchair.Reluctantly, I told my mother that the deal was off.
Over the next few years, thanks to judicious pacing, yoga and good diet, I made a partial recovery. 
Slowly I began to pursue my love of travel again, always allowing days either side of the journey to recover.

Assisted travel

Eventually I was well enough to try flying ­ but never outside Europe. At airports, I made friends with the 
ground crew and learned always to ask for assisted travel where they provide a wheelchair or buggy, so 
that I didn't use up precious energy with walking.
Finally in the summer of 2003, after a few weeks at a fantastic yoga retreat in Spain, my health seemed 
robust enough to consider the impossible. In September I announced to my mother that we would make 
it to India the following Spring.
Having made partial bookings with the tour company, I immediately relapsed for eight weeks. What was 
I thinking? I couldn't even travel into London, let alone all the way to Delhi!

Advice for the journey

I can only describe what I went through before the journey as a rollercoaster of fear and excitement. 
However, a friend with M.E. had lived in India and reckoned that the food and climate would suit me 
so well that I would be better there than in the UK. 'Have lots of ayurvedic massages' Trish urged, 'they 
are so cheap there. Try Indian head massage and don't be afraid to take sleeping tablets to help you 
survive the plane journey.' She also recommended a supplement called melatonin which helps jet-lag 
by resetting your body clock. Good advice, as I was to discover.
A more mildly affected M.E. friend who is a veteran of long-haul travel advised me to take lots of snacks 
for the journey, and to book into a hotel so that I could have at least 48 hours of undisturbed rest before 
going on anywhere else.
Meanwhile, my pal Erika worried about me getting 'Delhi-belly' and was less enthusiastic: 'You'll be on the 
loo all the time!' Her advice was to upgrade my seat to 'super economy' on the way out, so that I'd have 
extra leg room to make the journey more comfortable. Some AfME members have even secured a free 
upgrade by faxing a doctor's note or medical certificate about their disability to the airline in advance.

Slow and steady helps you pace

I decided to go out two weeks in advance of my mother so that I could rest before we started touring 
together. With the help of a wonderful Indian tour company called Trans Indus, we designed an 
M.E.-friendly package at a very reasonable price. While we were putting the itinerary together, I noticed 
points such as a train that left at 5am, or a stopover of only one night after a long journey. These were 
amended to make them more M.E. friendly ­ so that I was, literally, pacing my schedule.
The next decision I had to make was whether or not to have vaccinations or take anti-malaria drugs. 
There were points of view on both sides of the debate, but in the end my personal choice was not to 
have any inoculations in case they caused a flare-up of my symptoms. (It's less of a risk not to have 
vaccinations if you avoid malaria season and high-risk areas off the beaten track). 
I emphasise personal choice because other travellers with M.E. disagreed with me on this, one having 
lived in an area where she'd seen people die of malaria. Instead I took artemisia, an anti-parasitic herb 
sold as Eradicidin Forte by Biocare, and lots of acidophilus or 'friendly bacteria' to prepare my gut for 
any bugs. Recent clinical trials in Thailand have shown artemesia to be 90% effective ­ more than the 
standard drug, Chloroquine.
As I finalised my carefully-laid plans, my mother and I had a massive row, caused by nerves on both 
parts. We couldn't afford to have separate rooms, so there was even more pressure on me to 'be well'. 
While she worried about spending money on a trip where she might end up having to nurse me, I was 
nervous about sharing a room with someone quite chatty, when sleep was so essential to my health.
Meanwhile my husband booked me into a hotel near Heathrow so that I wouldn't have to make an extra 
journey to the airport before the flight. Luckily it only took seven and a half hours to Delhi and, thanks 
to the upgrade, the journey was pretty relaxing. As soon as I got off the plane there was a wheelchair 
to whisk me through immigration and Arrivals. There, I was met by a rep from Trans Indus, who took 
me to a hotel where I stayed for two nights, following my friend's advice to rest up. 

Heightened experiences

Now my Indian adventure really started. The train journey to Rishikesh was very funny as I shared 
my overnight sleeper with three Indian men who were absolutely charming, looked after me ­ and all 
snored!  Thanks to the advice about taking sleeping tablets and using earplugs, I did manage to get 
some rest though. I was then taken to a stunning guesthouse high above Rishikesh in the Himalayas, 
overlooking the Ganges. To me this paradise-on-earth had an extra sweetness to it; living within the 
confines of M.E. for so many years made every new experience extra special. Here I joined a yoga 
retreat and also made lots of friends of different nationalities. The Ganges, known locally as the 
Ganga, is said to be a Goddess who fell to earth and became a holy river. It certainly felt very spiritual 
to me ­ high up in the mountains the water is green and crystal-clear, fringed with the whitest of sand. 
After ten days, refreshed by the yoga, clean air and excellent healthy food, it was time to leave and 
make the tortuous journey north to meet my mother at Amritsar. I was cheered along the way by 
meeting a hand-reared baby elephant called Yogi who was very cuddly. Memories of Yogi helped 
me accept the mini-relapse I then had at Amritsar, which meant a frustrating day in bed. Mum was 
great and totally accepting of my limitations. The old fear of 'I can't do this ­ I'm going to be too ill to 
travel', was overcome by doing meditations on the Bhagavad-Gita  (an Indian holy text we had studied 
by the Ganga) and the next day I travelled 16 hours south by train with my mother to Agra. 

Adventuring within my limits

The weather was now warming up and I was blooming in the sunshine and clear blue skies. Only if 
you have M.E. can you appreciate the sense of wonder and achievement I had at finally seeing the 
Taj Mahal shimmering majestically in the sunshine. Because of my illness, every experience was 
heightened ­ I took joy from just being there. For the next two weeks, my mother and I had a driver, 
Santoosh, and we worked out a system where I lay down in the back of the car, while she sat up front 
and chatted to him.
We had many adventures along the way ­ from riding an elephant and a camel, to meeting a Royal 
Maharaja, and consulting an astrologer who told me I had 'good health for all my life'. Hah!  What 
did he know? In addition, we ate delicious food, and as I was careful not to drink tap water or have ice 
cubes in drinks, I had no tummy upsets.
Some days were bad for me and meant I had to duck out of sightseeing and rest, feeling weak as a 
baby monkey compared to the vitality of my 72 year-old mother. But it was worth it. The ayurvedic 
treatments helped my health reach another level and apart from a massive nose bleed at the Lake 
Palace hotel in Udiapur, where I was told my body was creating too much 'pitta' (heat) from the food 
and climate, my health was pretty good.

Breaking out of the glass cage

I fell slap bang in love with India ­ with the people and their devotion to 'the Creator', with the Hindu culture, 
noisy trains, colourful markets, and delicately spiced food ­ not to mention all that sunshine. One month 
on and not only is my health still a couple of notches up but my confidence has also soared. Now I know 
that with careful planning I can manage such a major trip, the world is my oyster and not my jailor.
Dr Clare Fleming once likened M.E. to being trapped in a glass cage and, for the first time in 15 years, 
I broke through the confines of that cage and expanded in mind, body and spirit. As for the astrologer, 
my yoga teacher has pointed out that he could be referring to my spiritual health rather than just my 
physical state.
Was it worth the angst and aggro of organising the trip around M.E? Yes, yes and yes! I can't wait to go 
back.

My tips for travelling

Plan your trip and flight times carefully, factoring in lots of rest breaks and avoiding extreme temperatures
 
Take high-protein snacks for energy with you and drink lots of water during the flight 

Request assisted transport at airports as soon as you check in (or better still, in advance). Be assertive 
about the effects of your disability and ask if you can book a front row seat for more leg-room 

Discuss vaccinations or anti-malaria treatments (including herbal alternatives like artemesia) carefully with 
your GP or travel adviser, or for further information, visit www.masta.org. Biocare can advise on their products 
­ for contact details, see page 26.

I chose to travel during the non-malaria season but you need to consider the risk of life-threatening diseases 
compared to the toll injections and medicine may have on your M.E. For more information, see 'Dear Doctor' 
in InterAction 42 about the pros and cons of vaccinations ­ (photocopies free from the Wells office on request)

Take an eye mask and earplugs to help block out light and noise when you need to rest e.g. from www.shop.
store.yahoo.com/earplugstore/

If sleep is a problem, ask your doctor for sleeping tablets to help you survive longer flights or adapt to a new 
time zone without getting overtired. The sleep hormone melatonin can help deal with jet lag and is available 
from the USA via www.immunesupport.com 

Avoid ice and water unless bottled. Check that the seal is opened in front of you 

Visit www.flying-with-disability.org for more useful travel tips including advice on travel insurers for people with 
healthproblems

And finally ­ pace, pace, pace. It's tempting when sightseeing to think that you can do a bit extra or walk a bit 
further ­ but of course, you risk a relapse. I insisted that sightseeing tours were split over two days and that I 
always had at least a day's rest after travelling

Fiona Agombar is an AfME trustee and author of Beat Fatigue with Yoga.She'll be leading a two-week yoga 
ayurvedic retreat in Kerala, south India in October 2005 ­ more details from Trans Indus, tel. 020 8566 2729.
Alternatively, you can write to her at Box No. 4040 or e-mail FionaAgombar@aol.com