Eating, Drinking and Swallowing
Eating is such a normal part of everyday life that you take it for granted until you are unable to. ME can affect your digestive system in the same way it does other parts of your body, causing pain and fatigue. Even the smallest meals can be exhausting. Look for foods that are easy to eat and digest. It can be very hard having to live on the same food; but with time you will be able to eat more. For the moment try to be creative.
The food that Severely affected can manage varies from person to person. Generally your body craves the things it needs – so listen to it! Even if this is just having chocolate nearly all the time.
Some people manage to eat crunchy crispy foods that go down to nothing and are then easy to swallow. Others have one piece of normal food e.g. a sandwich or a piece of cake, which they can slowly eat throughout the day, so they don’t have to sit up for long periods. If you have problems swallowing and digesting food, due to the muscles in your oesophagus/throat or stomach, then you may only be able to manage liquids like soup, yoghurt, milkshakes/smoothies or fruit/vegetable juices.
Small meals little and often are good. Food takes energy to digest as well as to eat, so rest after every meal. Some foods take more digesting than others, particularly red meat, rich food and anything with lots of additives. Some people find it helps staying off these.
Your carer can make simple, easy to swallow meals by cooking a casserole of meat (optional if your vegetarian) and vegetables. If you can’t swallow solid food then you can just eat the gravy or you can blitz it in a blender/food processor. You can get handheld ones, which are useful.
When pureeing food keep different items separate and lay them out on a plate in separate sections the way you would normal food. Try to make it as attractive as possible.
Babylicious make a range of frozen baby foods, which are a good ready to heat option. They are available from Iceland. Check on their site for other stockists and information on the areas covered by home delivery. www.babylicious.co.uk
People with swallowing problems may need extra liquids to help food down. Serve everything with gravy or soup. Try a range of packet soups, sauces and gravies to add variety.
Some people have problems with starch grains scratching their sensitive throats, so you can avoid using potatoes or anything you have problems with. If you don’t have this problem then rice, potatoes, pasta or dumplings can be added to cook in the casserole to add a bit of variety.
Vegetable Mash - Mashed potato and other vegetable purees can be a good soft meal. Try unusual vegetables like butternut squash, spinach or sweet potato.
Soups - Soups are good and very nutritious. It is a good idea to get some special soup recipe books, these can be ordered from the library. Have a go at different ones and see what works for you. You may only be able to manage a small amount at a time, so freeze the rest if the recipe says you can. Complan and Slimfast make filling soups, don’t use all of the packet at once - it is very strong!
To make the soup more interesting swirl in some cream, yoghurt or sour cream. Fry small pieces of bread or breadcrumbs to make croutons. Use different oils to fry the in, to add flavour.
Fruit - Stewed or tinned fruit can be served as it is or pureed. You can also have grated apple or mashed banana. Any of these can be mixed with yoghurt and honey, cream, crushed meringues, custard or ice cream. Different supermarkets do a wide variety of mousses, yoghurts, crème caramels and creamy desserts. It is worth rotating where your carer shops, therefore increasing the amount of variety of desserts you have to eat. All these desserts may give you ideas of some to make up on your own .
Jelly - This can be made with a little extra water to make it thinner or by substituting half of the water for milk or lemonade. Why not add some fruit into the mix before it sets. You can buy pre-made pots to keep in the cupboard.
Blancmange - Packet mixes can be bought in a variety of flavours from the supermarkets. Again add a little extra milk to make them less solid.
Custard - Fresh custard can be bought from all good supermarkets. Add extra milk to make it thinner. You can even get chocolate custard, delicious served with ice cream and/or tinned fruit, especially pears.
You can also get packet mixes of custard to keep in the cupboard or small ready made pots – these come in lots of different flavours.
You can make your own custard and sauces to add variety to a wide range of foods, especially fruit or ice cream.
Milk Puddings - Flaked rice, tapioca, rice pudding, creamola, macaroni, ground rice and porridge/ready brek can all be bought in packet form and made up. Add sugar, honey, jam, fruit sauces, maple syrup or chocolate spread for a variety of flavours. You can also add drinking chocolate powder and less sugar to the milk when making it up to give a different flavour e.g. white chocolate, mint and orange.
Different flavoured drinking chocolates are available. Milo is a good brand as it is high in nutrients and is called “a food drink”. You can also heat two cardamom pods in a cup of milk or add a grating of nutmeg for an alternative flavour.
Warm milky drinks are an easy way to take in nutrients e.g. hot chocolate, horlicks etc, as are Complan and other convalescent food drinks available from chemists. Hot drinks are also a good way of warming up your hands. Biscuits dunked in a hot drink are easier to eat!!
Build Up Drinks / Milkshakes contain all the necessary vitamins and minerals and give you a boost of sugar; but may be too sweet for people suffering from nausea.
Smoothies are great. You can blend your favourite fruit with milk and possibly ice cream or yoghurt for a refreshing, nutritious and tasty drink. Use soya or rice milk for a dairy free alternative. Add sugar, honey or fruit sauces to taste. Some tasty fruit sauces are available from Lakeland Ltd although intended for yoghurt they can be used for anything.
Fruit or vegetable juices are a good option; but may be difficult if you are affected by the acidity of foods. It’s amazing how sharp apple juice is! Juicers are available from John Lewis, Argos and other good electrical suppliers.
Maxijul powder or dried milk powder can be added to food/drinks to give you an extra boost – it’s a good idea for the carer/parent to slowly build up the amount in food/drink so the severely affected person does not taste it. As the severely affected person begins to recover this can slowly be decreased.
It can be very hard for a carer, who has spent hours preparing a meal that is then too difficult/painful to eat. It is essential that they remember this is not your choice, if you could eat it you would and you are not just being difficult. It is always worth having stand-by foods in the fridge that you know you can always swallow.
No matter what you can eat it is important to keep up your sugar–levels because if you go hypoglycaemic you will feel sick, dizzy, get a bad headache and generally feel worse than you do already. It is a good idea to have a bowl of chocolate beside you to keep nibbling on throughout the day. Chocolate buttons are good because they slip down easily, even if you have to break them into quarters if you are feeling really bad. Eating chocolate then makes you need a drink, so is a good way to keep up your fluid levels, which is essential to avoid dehydration and admittance into hospital to be put on a drip for rehydration.
You’ll be amazed at how different chocolates can have different tastes. Here are a few of my favourites...
Leave chocolate on radiator in winter to soften but not for too long!
Easter is a great time because there are so many different chocolates available, so stock up on lots of eggs. Get someone to break the eggs into small pieces so they are easy to eat.
Making Eating & Drinking Easier
To make eating and drinking easier always have food and drink easily in reach. Keep a table beside you on which you can put anything that you may need. Place a tray on top to stop things rolling off. Buy a domed shape cover to put over food to keep flies away in the summer.
Drinking It is essential that you keep your fluids up to prevent dehydration and the need to go in to hospital.
First thing in the morning get your carer to measure out at least two litres into a jug. From this you can then make sure you drink the minimum requirement of water necessary each day to prevent dehydration. You can get pretty plastic jugs with lids from places like Morrisions and Homebase, mainly during the summer. It’s worth getting a couple so there is always one clean. Always have two glasses poured. This ensures that you have always got something to drink, even when resting and alone. Get your parent or carer to refill them when they come back.
Straws are useful because they save you having to tilt the glass. To make it easier to drink from cut the straw so that it is just a couple of centimetres above the rim of the glass. This means you don’t have to chase the end when going for a drink. Buy pretty, colourful straws from supermarkets or alternatively use straws from fast food restaurants. These are good because they are wider and you can drink more in one go.
Cups with lids and straws are also an option because they prevent spilling or use a cup with a spout. If you get very weak then a carer can squeeze water into your mouth through a sports drinks bottle or you can be fed with liquid on a spoon or suck a flannel or sponge.
During hot weather ice cubes are an option, as the liquid slips down your throat without you realising. For an alternative you can freeze fruit juice or suck ice lollies.
You can now get mini fridges to keep in your room, good for storing drinks and yogurts. Available from www.minicoolers.co.uk It does have a fan; but it is quiet. If you find it too noisy you can keep it in a wardrobe or cupboard.
Water dispensers can be sat on a top with easy access and no need to lift a heavy jug, available from Argos www.argos.co.uk . Stand the dispenser on a tray to avoid leaks/spills.
Make sure you have regular little sips of water from a small glass, possibly using a straw.
It is also important to keep your blood sugars up because hypoglycaemia causes nausea and dizziness. You can get a special powder called Maxijul (on prescription) to add to water to boost the sugar levels. Start on a very small amount, e.g. a tablespoon in a litre of water and then gradually increase it so that you can’t taste it.
At times drinking can seem impossible and it feels easier not to bother because you feel worse afterwards; but the alternative is having to go into hospital and be put on a drip. While this is nothing to be scared about, it is something to avoid if possible.
Lap trays are essential if you can eat more than a couple of mouthfuls at a time. Place a non-slip mat on top to stop things moving. Inflatable swimming pool food and drink trays also provide a stable alternative.
Use plastic plates, bowls, glasses and cutlery as these are lighter and easier to use and can be bright and colourful. Alternatively use children’s cutlery and teaspoons to eat. If you have problems holding cutlery then specially adapted ones are available from care shops. Bowls are easier to eat and feed from. They hold more liquid/gravy than plates.
Have a flannel or damp tissue by you to wipe your fingers on. Keep a towel and box of tissues close in case of spills.
Crumbs in bed are uncomfortable to lay on and can cause pressure/friction probs. You can now buy crumb pets which roll along and pick up crumbs. They are quieter than a Hoover and quite light. www.legendcookshop.co.uk
Feeding. Some severely affected people become too weak to feed themselves and need help. This is very hard and you feel like a baby again; but sometimes it is the only option.
Feeding someone/being fed is a refined art and at first will be quite messy, especially if you have problems opening your mouth or if you can’t sit up. Get your carer to cover you and the bed with towels, just in case. Get them to use a small spoon and take it slowly.
Make sure the food is at the right temperature, severely affected people become very sensitive to temperature and may need it a lot colder than they would normally have it.
If it takes a long time to eat, then divide the food into two halves, keeping one half warm as you use the other.
If you have problems swallowing you may feel like you are gagging and about to choke/throw up. This is an instinctive reaction and one that is hard to overcome. Try and stay relaxed, telling yourself you are not going to be sick and that everything is okay. Concentrate on breathing regularly and always have a drink at hand.
Some good books to get are:-
Mail Order Meals
Frozen meals can be bought from special companies who deliver to your door. Some offer meals for special diets and soft food options.
Weight Loss & Gain
Severely affected people seem to be divided into two categories: - the ones who lose weight rapidly and the ones who put on weight despite eating less. Both situations can cause problems.
Severely affected people are often accused of being anorexic due to such a great weight loss and people find it hard to understand how tiring eating is. If you lose a lot of weight then it is an idea to eat calorie rich food as much as possible. You can get special build up soups and drinks, which have extra calories
Other severely affected people who can eat relatively normally put on weight easily as their body is not burning the food. This can be very hard emotionally but is often unavoidable. Stick to a healthy balanced diet and try to tell yourself that you will lose the weight when you are better.
The best advice is to eat when you feel you need to, make sure that you choose foods that appeal and always keep drinking.
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