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Alison Bailey Castellina's Profile
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Enjoying Holidays with a disability- Holidaying in 40 degree heat
Over the years, I have gained knowledge on how to manage ME/CFS abroad. I make sure that holidays refresh me, rather than wreck me.
On short haul flights
, I always take a half litre bottle of water and avoid all caffeine or alcohol. With the new flight rules relating to security, I guess one has to buy a bottle of water in duty free or on the plane. I have consulted airlines about minimising the risk of getting infections on flights. Their advice is to a) sip plain water throughout the flight and b) "sniff it" (in practice moisten the end of your nose now and then!). They tell me that some people get infections on flights because at 34,000 feet, the humidity in the flight cabin is about 10%. At that level, the protective hairs in your throat and nostrils dry out and stop filtering germs. One should keep them as moist as possible: they are a valuable part of one's immune system. So far, I have not succumbed to any in-flight infections.
In 2006, I went to Istria in Croatia. Croatian is a Slavic language. So I prepared by doing "my homework" in advance, which, in this case, was asking a friend who had been there about the range of products in sale in supermarkets. So I knew that shops stocked foods that I could eat.
People with ME/CFS not only have to negotiate travel, heat and diet in a foreign country but if they expose themselves to the negative effects of bites, stings, jelly fish, mosquitoes, food allergies, sunburn, heat exhaustion, climbing hills in the heat and dehydration, they can wreck their health, for weeks or years. How many times, over the years, have I have heard sufferers say:
"I was never the same again after I did such and such on that trip/holiday....."?
The last thing one wants is to return from a holiday ill.
The best prevention is information. First, I carefully
read the small print on insurance policies
in advance. In the EU and Switzerland, I make sure that I always carry my EU health card (European Health Insurance Card). Other stress precautions include: a) carrying a photocopy of my passport in my luggage b) wearing a security belt with mobile, phrase book, contact numbers of embassies and local police, details of my condition, blood group and special treatments in hospital and c) carrying a small personal alarm. I also take a stock of British pounds, in case of emergency. The stress of losing passport, papers and money abroad, or even ending up in a foreign hospital with a complex disability like this one, even requiring an operation, would not do one good, in the long run.
Global Warming and Disability
In July 2006, the temperatures in the UK reached a sweltering 35 degrees. Using the internet, I found that my holiday destination was predicted as 36-40 degrees centigrade. How would I cope, since in ME, I had been able to bear direct sunlight at all? First, an electric fan is essential over 30 degrees. In the event, my accommodation had good air conditioning. Most days, temperatures reached 36 degrees. At times, I longed for the cooler weather but I coped well, even allowing myself a very slight tan. Best of all, I climbed about 500 feet to the top of a hill, without any ill effects, using
Nordic Walking Poles,
which are like having "sprung" shoes, though I carefully rested along the way. I savoured the wonderful view of the gorge down which, in ancient times, Jason and the Argonauts fled with the Golden Fleece. This was a real assurance of renewed fitness, but not be undertaken lightly, since heat plus exhaustion can be damaging, for people with disabilities.
Coping strategies in Extreme Heat
The best heat strategy for people with disabilities is to
wear very light, long, cotton clothes, UV tested sunglasses, a large hat and to carry a water bottle
. To help with any flat walking, you can use Nordic Walking Poles which greatly aid muscular effort, particularly on gentle gradients. Since it is scientifically proved that sun depletes certain functions of the immune system, all very strong sunlight should be avoided. In cases of acute immune weakness (e.g. after operations or immune treatments) sun can more easily cause skin cancer. People with an acute disability or recovering from an operation must cover up. Exposed skin, including on face and nose, should be amply covered with suncream (30-50 protection rating) as should one's feet. A
large brimmed solid sun hat
should be worn at all times in the sun.
I took a rucksack with
a litre and a half water bottle
in an ice cooler on all excursions and in the car, especially on Continental motorways. Be wary if you are travelling during "les grandes vacances" in Italy or France from 1-31 August: you could get trapped in 36 degree heat, in a motorway jam, with no water for several hours. One must
drink 2-3 litres of water per day
in heat and at all costs avoid dehydration, which will quickly leech out precious minerals and vitamins from the body (very weakening for immune conditions). One should eat less in the heat, including
moderate amounts of salt
(salt lost in the heat must be replaced) and take mineral and vitamin supplements. As an emergency measure, I always pack
fast replacement body salts
, in case I develop heat exhaustion, which I once did, in the Sahara, in August. I also
carry information on how to treat heat exhaustion
, taken from the Department of Health website.
I take an
emergency first aid kit
with basic drugs - aspirin, plasters, antiseptics and antihistamines and one kit, given to me by a Swiss doctor, in case of an allergic "attack". I carry instructions on the kinds of anaesthetics that can be used on someone with my condition.
The best sun avoidance strategy is always to
walk on the shady of the street
. Above 30 degrees, I
observe the siesta rule
. I go out until just before midday, return for a light lunch, taken in the shade and sleep between 3pm and 4.30pm. Remember that Sicilians sleep all afternnoon and start their evening meal at 10pm. They go bed at 2am. I enjoy a longer evening than normal, in the cool of the day. If you have a moderately bad condition or are recuperating following an operation, this pattern will help you abroad, as it minimises the stress of the day and maximises your energy. When swimming or simply standing in the water, be aware that you are exposing yourself to UV rays and strictly limit the time swimming, or even floating in water. With a disability, never overexert yourself and
never actually "swim" in thermal water
as this can really damage one. Heat depletes the immune system, particularly when combined with exertion.
Coping with mosquito bites
I have different skin reactions to mosquito bites from those before my condition. I tend to produce larger reactions. Anywhere, even in southern Europe, people with unusual reactions can make effective use of
a mosquito net,
available on the internet. Mosquitoes "come out on the prowl" from 5 o'clock sharp (allowing for time differences!) so at 4.45pm, I apply an natural geranium or lemon-scented spray, available in Continental pharmacies, on all exposed areas. I avoid insecticide, either in suncream, or as a spray. The first time I had a reaction, I urgently consulted a foreign doctor and he instructed me to take an antihistamine.
Avoiding Jelly Fish, Sting Rays and other Beach Hazards
People with allergies and other disabilities should try
at all costs
to avoid being stung by jelly fish or sting rays, treading on something sharp and needing a tetanus injection, though after consultation with a doctor one can be risked, usually with no ill effects.Read up guide books about the sea conditions and hazards, talk to local people, check for prevalence of jelly fish or sting rays with locals and wear a pair of plastic sandals even when swimming (though sting rays can pierce these). Carry antihistamines at all times..
Emergency treatment: jelly fish -
cover the bite immediately with dry sand, leave it on for five minutes and then remove it with a knife blade. Do not use wet sand. In the case of someone with allergies, they should do this
also immediately consult a doctor, testing at the same time whether an allergic reaction is taking place and taking preventative steps.
Emergency treatment : sting rays -
If in a remote area, treat the pain by immersing the injured area in water as hot (but not burning) as can be tolerated (113°F or 45°C) for 30-90 minutes. This neutralizes the effects of the venom because the venom is inactivated by heat. At the same time, monitor allergic reactions and get to the nearest hospital as soon as possible.
When everything is managed to perfection, someone with a disability can sit back, rest and thoroughly enjoy the revitalising change of scene that a foreign or exotic holiday can offer them.
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