The symptoms of M.E. can make eating an ordeal for some people. Zoë Williams serves up practical advice for those who already have too much on their plate
'The sheer effort of eating was exhausting and painful', writes Diane Newman. 'I used to eat and wash in small achievable chunks with several hours recovering in between - this took up the entire day. I ate small meals of mashed food with a lightweight plastic spoon. Coordination problems meant that I kept digging the utensil into my face, so a spoon was better than a fork.'
Adapted cutlery can be obtained, some of which is bent at an angle, or with built-up handles for people with a weak grip. Plastic cutlery makes less noise and is lighter or you might get on better with 'finger foods'. 'I make sure I have food I can eat nearby at all times' says Linda.
Other aids that can make life easier include an over-bed table or beanbag tray (e.g. £6.99 from Argos), a non-slip mat, and pillows to go under your arms and legs. For drinks some people use a cup with a spout to avoid spillage, or a water bottle with a nozzle lid. Bendy straws can be used lying down, perhaps with a lidded beaker, and you might find a bowl easier to eat from than a plate.
Special dishes are available which can have hot water put inside them to keep food warm. Another tactic if it takes a while to eat, is to divide food into smaller portions to heat up separately. If you are able to eat some chewy foods but find this exhausting, try eating a small amount away from main mealtimes.
One woman said she found warm food took less energy to digest than cold, and another found it helpful to put a hot water bottle on her stomach after eating. Some people find that food or drink goes down the wrong way more frequently, or gets stuck in their throat. If you need to eat lying flat, you may find it helpful to sit up for a couple of seconds afterwards, to release gas (like burping a baby!).
In his book Living with M.E., Dr Charles Shepherd recommends discussing any gastric problems with your doctor, and getting any tests done that seem appropriate to rule out other causes such as coeliac disease, Crohn's disease, or giardia parasitic infection. Sue Firth, for instance, experienced bad indigestion-type pain which turned out to be a treatable stomach ulcer. Hypoglycemia (low blood sugar), irritable bowel syndrome, food sensitivities or an imbalance of gut organisms may be additional problems in some people with M.E. - for more information, see page 35.
'I had no appetite at all,' writes Diane. 'Food tasted like cotton wool, and my throat felt tender and lumpy, as though I had a piece of glass down my throat. I talked myself into eating by telling myself that the food would nurture my body.' When Alison Jacobs loses her appetite, the one thing she can manage is celery; she later discovered that celery contains an appetitepromoting substance.
You may find it easier to stomach fruit and veg which has been juiced. Alternatively, two people with nausea as part of their M.E. mentioned the prepared liquid food 'Slimfast' as something they could tolerate better - although it does contain a fair bit of sugar.
When I was more ill, soups and soft foods in small portions helped me to pace myself and avoid collapsing after every meal. I particularly enjoyed trying new recipes at a time when eating was taking up much of my energy.
Sometimes my dad arranged food in shapes such as a smiley face. I still find soft food very useful not only when I feel awful but also if I'm in danger of doing too much, or wanting to save energy for something else.
'I sometimes used baby food when I was finding it too hard to chew,' writes Daniel Doveton, who was unable to feed himself for six years, including some time tube-fed. 'One problem was that people tended to feed me too fast, which caused stomach problems. It was very painful returning to feeding myself when my health improved. I slowly built up from two mouthfuls per day with the help of careful passive physiotherapy.'
On the subject of tube-feeding, Lorraine adds: 'When my daughter couldn't eat enough to keep a fly alive, I was desperately worried. Tube-feeding helped her a lot and we were able to manage it at home (except for a hospital visit to have the tube put in and another to have it removed). It gave me more peace of mind to know she was getting enough nourishment.'
Naomi Whittingham also had her nutrition supported by tube-feeding. She writes: 'For me it was worthwhile. Although I found insertion of the tube traumatic, still experienced some nausea and could taste the feed, it was the only way I could possibly have reached a safe weight. I continued eating my usual small amount during the day, and was fed through the tube overnight.'
Dr Shepherd has conducted a small study of M.E. patients' experiences of tube-feeding, and hopes to publish a report in the near future. For further information or to share your experience, you can contact him do AfME at Box No. 3966
Lorraine is a member of the Tymes Trust Advice Line Team dealing specifically with tube-feeding enquiries. Tel: 01245 401080 weekdays 1 lam - 1 pm and 5pm - 7pm. The Association of Young People with M.E. can also give advice about tube-feeding relating to under 26s; tel. 01908 373300.
'Home Choice Meals' deliver frozen meals including some soft foods, tel: 0845 602 1123 www.homechoicemeals.co.uk
Wiltshire Farm Foods also offer a frozen meal service including special diets. Call 0800 773 773 or see InterAction 35 page 21 for more details (www.wiltshirefarmfoods.com).
Most social services departments have contacts with home meal delivery agencies and referral may mean you pay less.
The Motor Neurone Disease Association has put together a book called The Recipe Collection: Easy-to-swallow meals. Their free leaflet Eating and Drinking (which includes information about swallowing difficulties and dry mouth) is also available on their website: www.mndassociation.org (click on publications).
The book costs f2 to cover P&P Tel. 01604 611 870 or e-mail firstname.lastname@example.org.
Soft Options - for adults who have difficulty chewing by Rita Greer (ISBN 0-285-63447-X) costs f9.99 and is full of ideas on adapting food to make eating easier, including recipes and information on presentation and nutrition. Both books can be borrowed from the AfME library.
The Disabled Living Foundation can provide information about daily living aids mentioned in this article - tel: 020 7289 6111 or visit www.dif.org.uk
Argos Mail Order for juicers, blenders and beanbag laptray tel. 0870 600 2020 to order or pick up a catalogue in-store. With thanks to Dr Charles Shepherd for his help with this article.
Interaction Issue 45 – August 2003 p22 - 23
ACTION FOR M.E. 3rd Floor, Canningford House, 38 Victoria Street, BRISTOL, BS1 6BY