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This page contains great advice to make life easier! If you have any advice that others might find helpful, please help us to help others by sending them to info@anzmes.org.nz. Much more useful information on a wide range of practical topics are published in ANZMES' quarterly pubication 'Meeting Place'. Get this information sent to you by subscribing - go to our Join Us page. More tips are listed on the More Tips page.
General tips... Showering If your shower isn't over the bath, a plastic stool can be purchased from retailers such as Payless Plastics for less than $20. Sports Bottles are great, as they will let you drink without sitting up. For those of us bedridden some or all of the time, this can be another thing to help save a little bit of energy. Sports water bottles on a strap are also useful when you are out or not near the kitchen. Hand muscles can get tired holding a bottle for very long. They can be purchased inexpensively from plastics retailers. Some models have a thermal cover to keep the drink cool, and also have pockets for keys, etc., and a long over the shoulder strap. Use conveniences where you can. A clothes dryer takes less effort than hanging clothes on a line and taking them down. If that's too expensive, a cheap drying rack in the laundry room takes less effort than a clothesline in the back yard. Leaving washed dishes in the rack to air dry is easier than drying everything off. Lists A pillbox marked off with sections for each day of the week and each time of the day you need to take pills can be invaluable. These are especially useful if you suffer from brain-fog and sometimes can't remember if you've taken pills. A heating pad, hot water bottle, hot pack or wheat bag can all help with those sore tired muscles. Also good for keeping warm on cold nights! Books on Tape Use a walking stick though you probably don't need it - others get up and give you their bus seat and it just makes things just that little bit easier as people watch out for you. If you do feel ill a stick can give you more support with walking and balance. A cheap, light and foldable stool can be kept in the boot of your car or taken with you, so you are not left standing when you would rather sit. Sitting conserves energy for other tasks, especially when in long queues. Cooking Use pre-prepared meals if you can afford it. If you can't afford it (or would prefer to spend the money on treatments!) investigate Meals on Wheels or similar projects. Meals on Wheels and the like also give you some human contact with someone who cares. Some of the local hotels also give meal services. Get a stool to help with tasks like washing dishes. Sitting while you wash dishes, prepare meals, etc. takes less energy than standing to do the same tasks. Make sure the stool you get is high enough to let you do these tasks without bending, and if you need it get one with arms and a back. Guest Chef: If you have to have dinner parties or a family gathering get a "guest chef". I have friends who cook and everyone would enjoy getting together. I'll just sit on the sofa and be entertaining. Another idea is to get everyone to pitch in some money and buy in Chinese, Italian food etc. so there is no preparation at all. Cooking Extra: When you're well enough to cook, make enough for two or three meals and freeze the rest in individual portions. Then on days when you can't cook, you can just pull them out of the freezer and heat them up. This works best with things like soups, stews and rice dishes, but most anything can be frozen if you don't mind the texture changing a bit. Appliances Electric toothbrush Cordless phone Dishwasher Answerphone Video
[Back to Top of Page] 1. Bed: Check your bed. Is it comfortable? Are your pillows at the right height? Are you too hot or too cold? 2. Withdraw from bensodiazepines. They actually aggravate the sleep cycle and can worsen quality of sleep. You have to withdraw these drugs slowly over time. 3. TCA's Tricyclics like amitriptyline, doxepin,nortriptyline are often found to be the most useful medication for sleep and pain relief. Very large doses of these drugs are used as antidepressants but tiny doses such as 5-10mg taken at about 5pm will often restore the sleep cycle in ME/CFS sufferers. It may take 2-3 weeks before it works properly. Some people need a little more. Take it 5 hours before bedtime, as it is actually a slightly energizing effect to start with (it is a body clock organiser). It gives an 8-hour sleep and thick headedness and brain fogginess can occur for the first week while your body gets used to it. 4. Melatonin is a sleep hormone and is prescribed by your Doctor and can be helpful to some people. Others feel worse on this. 5. Antihistamines like phenergen or polaramine taken an hour before bedtime can also help if you can't tolerate Tricyclics. 6. Sometimes muscle relaxants are given if you have stiff, sore muscles causing pain. Diet and fluid intake Two New Zealanders researching ME/CFS in Kings College Hospital in London have discovered that the sight of a plate of scrumptious looking food stimulates salivation. Digestion starts in the mouth. When you take a vitamin pill the digestive process does not begin properly as the saliva and stomach juices do not flow as freely. Your vitamins and minerals are thus more readily absorbed from food. b. Frequent small meals. Eat little and often. Graze. Eat small amounts every two hours. You can take small sips of water or have gravy with your meal, but separate the main drinking from eating. Eat then drink an hour later. In people with ME it has been found that food moves slowly through the system. If you drink a lot of fluid with your meal it has been found that the food bloats up and moves more sluggishly. It is now suggested to drink up to 2-3 litres of fluid a day as well. Don't drink coffee, Coca Cola, energy drinks or alcohol as the body finds them hard work. Drink herb drinks, water, fruit juice, weak tea, etc. True food allergies are more obvious as you may get hives and rashes. With food sensitivities you often have had too much of one food. i.e. in strawberry season if you eat strawberries every day you will start finding they upset you. Eat no food too often and you will avoid sensitivities. Rotate food. c. Lower fat intake. d. Caffeine is hard work for the body to deal with. Watch coffee, Coca-Cola, chocolate, energy drinks, etc. as they are high in caffeine. Alcohol aggravates the liver so many people do not tolerate this. e. Extra salt. It is very important for those with normal or low blood pressure to take extra salt. This increases blood volume as research has shown that some ME/CFS sufferers have low blood volume and low blood pressure. Take a pinch of salt in your drink or a small sprinkle on your sandwich or honey on your toast. Traveling But
where to go? Going on a cruise is a good option if you can afford it.
Another idea is to rent or buy a mobile home/campervan. You can also go
to the same place over and over again, getting to know it well. This
will mean you will know the best places to stay and eat, what to do, how
to get around and when it’s best to go. Once
you have decided where to go, it is time to plan the trip. Plan well in
advance. Make a list of all the tasks that need to be done and try to
tick at least one off each day. By
planning ahead you can write to hotels, visitor bureaus, etc and ask for
more information about the places you are going and whether they will be
accessible for you. Ask things like whether there are lifts available or
just stairs? Is public transport nearby? How hilly is the area? The
internet can also be a good source of information; you do have to sift
through a lot of useless information though. As you collect this
information, be on the lookout for things that could be useful on your
trip. Photocopy or print out useful maps etc to take with you. Try to be as flexible as possible with your plans. This will allow you to adjust what you do depending on how well you feel on the day. Although it is attractive to have the whole trip organized by someone else, the pace that most organized tour groups go at is much more than most ME sufferers can deal with. However, some travel agents and senior citizens’ clubs organize special tours with more leisurely travel and sightseeing schedules. If you can find a tour like this it may be worth considering. While
away, take your time. Try and schedule regular days without any journeys
or activities so that you can rest if you need to. If you don’t need
to rest you have a bonus day! On the days when you do have fixed
activities that you can’t change, don’t plan too many!! Always allow
for the chance you will have a bad day. Avoid
peak times. You can also try to arrange it so that major journeys and
visits to attraction are on weekdays rather than weekends to avoid big
crowds and longer waiting times. Travel
insurance is a must. Remember to disclose that you have ME, this will
probably mean increased premiums and/or excess but if you do not
disclose it you risk having your claim refused, even if ME had nothing
to do with the mishap that befell you. It
is also a good idea to discuss your plans with your doctor. He or she
will be able to advice you on any extra medication may be helpful and
what to do in case of a relapse while traveling. If you are crossing
time zones, it can be helpful to gradually adjust the times you take you
medications to fit the new time zone you will be moving to during the
days before you depart. What
to take with you Make
sure to pack all of your regular medications. Take more than enough to
last your entire trip in case of emergencies. If you are crossing a
border you will need a doctor’s letter stating that you need those
medications and be sure to leave them in their original packaging. Travel
as lightly as possible. Consider going where the climate is reasonable
stable i.e. always hot or always cold so that you only need to take the
appropriate clothes. Clothes should be loose and comfortable. In any
case, you should not need more than one weeks worth of clothes, no
matter how long you are going for, as you can wash clothes while away. A
walking stick is useful if you will be doing a fair bit of walking even
if you don’t normally need one, as they can make walking a lot less
tiring. You can buy lightweight, retractable walking sticks made for
tramping from camping stores. A
neck cushion eye mask and earplugs will come in handy. Make up a calendar with all the days you are going to be away on it. You can then write down your itinerary, important phone numbers, addresses and all other useful information on it. Include things like how you are planning to get from the airport to your accommodation, what attractions you hope to visit on each day etc. You can then refer to it while you are away and will have all the information at your fingertips. No need to hunt around or try to remember important details when you are exhausted. Make copies of this and all other important documents e.g. Passport, insurance details, tickets etc. Leave a copy at home and scatter the rest around the different bags you are taking. The
Journey If
you are traveling by plane, book non-stop flights as even if you don’t
have to change planes stopovers add extra time to the journey. If you
must get a connecting flight, always allow ample time between them. Inform
the airline about your illness/ disability well before the flight and
even if you never normally use one, request a wheelchair for when you
disembark. This will mean no standing in long queues at customs and if
you have a connecting flight you will have someone to take you through
the maze of terminals, freeing you from having to navigate them while
you are exhausted. You can also ask that your luggage be tagged as
priority luggage. This will mean it will come off the plane quicker,
meaning you will spend less time waiting around when you are exhausted
after the flight. If
you require a special diet, again tell the airline well in advance. Some
flights do not include meals, so ask when you book. Pre-book
a seat with more leg-room. On the large planes, the seats near the
windows at the back of the plane tend to be roomier. This is because
there is not enough room for the usual three seats per row but more room
than is needed for the two that are there. It is also more likely that
the seat next to you will be empty, as these seats are less popular with
well passengers, allowing you to lie down during the flight. If
you have a choice, take a train rather than a bus. It is a much more
steady journey and hence less tiring. In addition, the seats are usually
much roomier. No matter what form of transport you are on, try and get
up and move around to minimise stiffness. This is easy on a train and
you can do it relatively easily on a plane too. For this reason, take
frequent rest breaks when traveling by your own vehicle. The
small ‘Link’ airplanes are boarded via steps. If you can’t manage
steps, speak to the airline when booking and order a wheelchair (to get
from the public area to the airplane), either a ramp or a forklift (the
smaller regional airports have ramps, larger centres have forklifts with
a platform that lifts you up and down) and an aisle chair (that you are
strapped to as you get on and off the plane). Auckland
Domestic Airport (and maybe other NZ airports) has a sick bay with a
bed. It is adjacent to the disabled toilet and you don’t need special
permission or a key to use it. Small
airplanes are very noisy and earplugs should reduce the stress on your
body. Accommodation Avoid
backpacker dorms as it’s virtually impossible to get an undisturbed
sleep in such accommodation. Also avoid rooms above pubs and nightclubs. There
are a number of internet based organizations that organize house swaps. ANZMES
also has a ‘Holidays for people with CFS/ME’ program. Members who
have room at home and would like to offer this as holiday accommodation
to other members can have their contact details listed in the ANZMES
magazine ‘Meeting Place’. When
booking your accommodation be sure to request a room that meets your
physical needs, near the lifts for example. Make sure the hotel is aware
of you illness/disability. If you have chemical sensitivities, you can
request that no soaps or perfumes are put/used in your room. When
out and about Carry
a days worth of money and other things like maps that you need to access
easily in a bumbag or light backpack. Always
have plenty of water with you and don’t let yourself get dehydrated.
Have a supply of snacks such as nuts and raisins, scroggin/trail mix,
lollies or chocolate as a pick-me-up
when that blood-sugar
gets low. Eat regular small meals, it may help to pack sandwiches or
something similar that you know you can eat so that you don’t have to
hunt around for somewhere that has suitable food for you during the day. You
may find you need rests or a nap during the day. If you just need a
break, find a quiet, cool spot or café. By taking frequent rests, you
may be able to avoid or at least postpone needing a nap. If you do find
you need to take naps, plan your days around them. More tips are listed on the More Tips page. |
