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Making Eating & Drinking Easier

To make eating and drinking easier always have food and drink easily in reach, especially if you have restricted mobility. 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.

Eating

If you are bed bound then lap trays are essential. Place a non-slip mat on top to stop things moving. Inflatable swimming pool trays for food and drink 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.

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.

Some 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.

Other people have problems with liquids and food that is too thin. In this case a special thickener can be added to food, which bulks it up. This is available through hospitals, talk to your doctor, speech and language therapist or specialist. There are a number of ways to thicken up food naturally you can mix a tablespoon or arrowroot mixed with water into soups and stews or add potatoes when cooking. Add bananas to smoothies for a thicker texture.

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.

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 not working, then you may only be able to manage liquids like soup, yoghurt, milk shakes/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.

The food people can manage varies from person to person. Generally your body craves the things it needs – so listen to it!

Speech Therapists can often help with swallowing problems, they are used to testing swallowing problems and can offer safe and easier ways to swallow. Ask your doctor for a referral or visit the Royal College of Speech andLanguagee Therapists (RCSLT) www.rcslt.org.

Drinking

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 fluid necessary each day to prevent dehydration.

You can get pretty plastic jugs with lids from shops like Morrisons 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 you're alone and possibly unable to lift a heavy jug. Get your 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 flat frizzy drinks like coke or lemonade. Use ice lolly or ice cube moulds.

Feeding

Some people are 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, some people are 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.

Dietary Requirements

Many people are on special diets due to food intolerance. The recipes on the site have notes on what they contain.

There are special products which can be used to substitute ingredients to make them appropriate for everyone. For example use Gluten free flour, use vegetarian gelatine, leave out the nuts, or substitute the Chicken Stock cube for a Vegetable stock cube.

The recipes are just a guide, adapt them for you eating requirements.

Tube Feeding

Tube-feeding can be a bit of an ordeal for some patients, although it is nothing to be scared of and you do get used to it. There are many reasons why people are tube-fed because of nausea, low appetite, inability to swallow, chew or suck, excessive sleeping or simply being too weak. Very often doctors are more worried about tube-feeding than patients, because it seems like such a drastic step. But for doctors (and carers) who are worried that a patient's low weight might mean they are getting inadequate nutrition, tube-feeding can reassure them that this is not the case, and gives the doctor (and patient) one less thing to worry about.

Tube-feeding usually arises by discussion with your GP or Consultant, who will refer the matter on to a nurse to do the procedure.

Types of Tube

The most common type of tube is a nasogastric tube (NG tube) which goes up the nose, down the throat and into the stomach. There are special silk ones that are thinner and easier to fit, and long term tubes that you can keep down for a longer time, meaning they don't have to be changed so often. It is usually easier for the patient if the nurse has a lot of experience fitting feeding tubes. If an NG tube is not possible you can have a percutaneous endoscopic gastroscopy (PEG), which is a tube that goes directly into your stomach through a small incision in your abdomen. This has to be fitted in hospital under a light general anaesthetic, doesn't need changing nearly so often, and is more appropriate if you suffer from vomiting.

Tube-feeding at home

Hospital doctors may be worried about authorising tube-feeding at home because they aren't used to doing medical procedures outside the control of the hospital. They may be worried that if something goes wrong, they will be blamed. You may therefore be told that the initial fitting of an NG tube must be done in hospital. However, tube-feeding can be done perfectly well at home with minimum disruption to life. NG tubes can be fitted at home by a nurse or you can go to hospital as a day case and go straight home afterwards to recuperate. Some training is needed for your carer.

The trickiest part is 'aspirating' the tube, which means checking that it's in the correct position. To do this your carer connects a syringe to the tube and withdraws a small amount of stomach fluid which turns blue litmus pink, showing that it's in the stomach.

Apart from that it mainly involves holding a tube in the air! (Some tubes are operated by pumps that put the feed in slowly over night). If the tube accidentally goes down the wrong way (into your lung) you will know about it because you will cough and gag, but you'll be fine as soon as it's withdrawn, although you may feel upset or need a rest.

You may feel shocked or frightened when an NG tube is fitted for the first time, even if it's done at home, and it can be uncomfortable, especially if one of your symptoms is a sore throat. You need to swallow regularly while the tube is going down your throat, which may be difficult for some. Try to stay relaxed, and say if you need a break between each swallow.

Feeds

There are many different sorts of feed available - your dietician will advise on what is most suitable. Some dieticians may select heavy feeds to build up patients' weight quickly. However, some patients find these unsuitable, especially if nausea is a problem. You may need to try several different feeds before finding one that suits you. One thing to be aware of is the speed at which the feed enters the stomach. Feeds may have to be administered slowly, otherwise the patient might vomit. If the patient hasn't been eating much for some time, it may be better to start with a light feed over a slow speed of several hours to reduce feelings of nausea and bloating. Tube-feeding may not alleviate nausea completely, but it may reduce it.

Liquid medications can be put down the tube, as can ground-up tablets that have been mixed to a paste with water. This can aggravate nausea, but there's not much that you can do about that.

Remember to drink lots of fluids when being tube-fed. If you are unable to drink, sucking an ice lolly will keep your mouth moist and may help with nausea. Remember you still need to clean your teeth even if you are not eating.

Re-introducing food

It is unnecessary to eat whilst on a feeding tube, and this should not be forced. However, when you are able to tolerate soft food or small meals, it is helpful to introduce them into your diet whilst the tube is in place, to reach a happy balance. Building up eating whilst cutting back on tube-feeding is sensible, and reduces any anxiety about whether you will be able to manage if the tube is suddenly withdrawn. If the tube is removed and you have a set back don't worry. Nothing is irreversible and a new tube can be fitted.

Advice
Community nurses can provide written tips and guidelines, be telephoned for advice, or visit to give help if needed. Ward nurses may be confident enough to insert tubes at home if a community nurse feels uncomfortable doing so.

Tips for living with an NG tube

RELAX as the tube is being put in. The natural reaction is to tense up but this will make things harder.

Most tubes have markers and/or numbers along them, so you know how far it has to go in. Keep a note of the number so you can tell the nurses when the tube is changed.

Soak the end of the tube in water to soften it first. You can use Aqua gel but this has a strong taste, which can aggravate nausea.

You can have an anaesthetic spray to help numb your throat before the tube is put down.

It is possible to have a slight sedative to help you relax. It is very light and you are fully conscious, it just helps your throat relax.

If you have been tube-fed for a long time you may develop scar-tissue in the nasal passage, which can make inserting the tube difficult. Using a nasal spray for polyps may help, as it will open up the nasal passage.

If you vomit, pull the tube out of your nose and then consult a doctor about having a new one put back in.

Stick the tube to your cheek rather than your nose as it is more comfy and doesn't get pulled as easily. You can then tuck it behind your ear out of the way. If you have sensitive skin and are allergic to normal adhesive tape you can use hypoallergenic Micropore or Hypafix. Alternatively put the tube through a hair clip.

Some people enjoy the cold feel of the feed; but you can have it warmed up.

Constipation can be a problem, so you can put fruit juice down the tube very slowly, using the pump, when the feed isn't going through. Prune juice is the best one; but doesn't look very nice and can cause nausea. Any fruit juice is good. Don't use bulk forming products like "Fybogel" as this will swell and block the tube.

Always flush your tube out with 10-20mls of clear water after putting anything down.
If the tube gets blocked there are several things that can be put down it to clear it out while it is still in the stomach. Try coke, lemon juice or bicarbonate of soda.

Disclaimer
This information is compiled from personal experience and research of other young people with ME and their families. It is intended for information and guidance; it is not intended to replace medical advice. The contributors to this web site are not medically trained but many live with or have significant experience with swallowing problems.

Not all the tips will help everyone. Readers are strongly urged to consult a professional medical practitioner for a proper diagnosis or assessment before trying any of the treatments or medications outlined. As with all medical treatments, always consult your GP, specialist, speech and language therapist, nutrionist or pharmacist and tell them about other medications, treatments or herbal preparations you are already undergoing, always read the label and patient information leaflet.

No responsibility for loss occasioned to any person acting or refraining from action as a result of any statement in this work can be accepted by the author. No part of this work may be reproduced or transmitted in any form or by any means (photocopying, electronic, recording or otherwise) except for personal or non-commercial use without the permission of Claire Wade.