A Hummingbirds' Guide to M.E.

Hints and tips are in two sections:

Practical Hints (on this page) and

Hints for Coping with M.E. Emotionally

Written/compiled by Jodi Bassett 2004
This version updated March 2009

Beds and pillows

• There are contoured pillows that hold the head and neck in a better position. But Robin McKenzie in his book ‘Treat Your Own Neck’ recommends pillows that you can adjust to your shape as being the best. He writes ‘ideally feathers or kapok, with rubber or foam chips as a second choice. Make a hollow for your head and bunch the edge to form a thick support for your neck. If the pillow does not provide adequate support for your neck, use a supportive roll in addition. Make a soft foam roll of about 8cm in diameter and 45cm long. Place this inside your pillowcase, on top of the pillow and along its lower border. Alternatively, use a small hand towel of about 50cm long and wide. Fold this in half and roll it loosely, then wind it round your neck and pin the ends together in front. The measurements are a guide, each person needs to experiment for himself.’ (IRISH)
• When lying on your side, it may improve comfort to have a pillow or cushion between your knees. Try bunching a duvet around your head, neck and back; you can change its shape to support you in different ways. You may find a small towel helpful sometimes to give extra support for your lower back. An unsuitable mattress can cause much discomfort. If you have the opportunity to try different types in a shop or when you stay somewhere else this may give you some idea of what you need. Joint pain may mean that the surface of the mattress is too hard, and back pain that it is too soft. The ideal is a good level of support with a soft surface. Mattress overlays can be obtained which may help if the mattress is too hard. Pressure relieving measures can be beneficial for painful muscles or joints and for general comfort, as well as for prevention of sores. (IRISH)
• A bed cradle keeps the weight of the covers off your feet, or you could try a pillow by your feet. You may need to use a double duvet or a blanket on the end to reduce draughts. If you are at risk of falling out of bed, consider getting a bed guard. Don’t be embarrassed to lie down in company or to have visitors when you are in bed. (IRISH)
• If you’re sore and achy all over in the morning and you have a bed that’s more than 10 years old, the pain might not all be M.E. related. My morning pain levels were cut in half when I just got rid of my 15-year-old saggy bed! Worth a thought anyway. Old beds can REALLY hurt. Not everything is the (just nearly everything.) (HUMMINGBIRD)
• There are some kind of air mattresses with holes in it which you can just lay on your mattress. Such an air mattress is very comfortable, since then I have no/less pressure pain. There are pillows, also called body pillows. You can use these in many different ways like for back support and meantime as pillow between your knees and/or (depending on the size) to support your arms and shoulders etc. I use it to support my arms and shoulders, this way I lay more relaxed. They are with different fillings like sand, foam, hard or soft etc. My mom made mine herself with soft foam, because I hurt a lot. (INGEBORG)
• Having at least 3 layers on a bed lets you deal with the hot/cold/hot/cold thing somewhat easier. A sheet, then a thin blanket and then a thicker blanket or doona on top of the bed lets you throw off the heavier top layers if you don't need them (that minute!) (HUMMINGBIRD)

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Bedroom

• If you’ve spent years in the same room, having a selection of vases, ornaments and pictures that you can rearrange every now and then really helps. Stops you going completely insane (if you’re lucky). Repainting a wall or 2 with a different colour every now and then is great if you can get someone to do it as well. It really stops everything being quite so samey. Make sure you use a low VOC (volatile organic compound) paint though and choose a colour that wont be too overstimulating to look at all day. Colours really can affect your mood. Reducing clutter also really helps your brain feel somewhat less overstimulated. (HUMMINGBIRD)
• Use lightweight drawers, tidy pockets, shelving systems and containers to keep frequently used items organised and within reach. One person with M.E. attaches her watch to a table light instead of her wrist. Although some parts of the room are likely to be visually busy, have a specific area for work/clutter and try to include other areas which are more peaceful to look at, in order to avoid an over-stimulating environment. Drawers are less visually over-stimulating than shelves, or you can have a piece of material attached to the front of shelving systems so that you don’t have to look at everything. The place where you spend the most time should be as visually peaceful as possible. You may be able to position mess so that it is out of sight or cover it with a sheet. Bookcases are visually busy so they do not calm the overactive brain. Putting a piece of material in front can be enough to make it more restful (choose a quiet design). This can be put on a curtain rail or attached to the bookcase with Velcro or hooks. When decorating, it is worth bearing in mind that busy wallpaper can be over-stimulating. You might also prefer plain bedding. (IRISH)
• Avoid ionisers as they can produce dangerous gases as well as ions. (According to ‘A Treatment Guide’ by Verillo & Gellman). (HUMMINGBIRD)
• An air filter with a HEPA filter is a good idea if you have a big dust allergy. They’re also meant to be able to remove mould spores as well and some even have carbon filters to remove chemicals from the air too to a certain extent. Just make sure you don’t get a really noisy one! (HUMMINGBIRD)

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Buzzers

• There are various types of buzzer, with and without an intercom, to enable people to call their carer/P.A. A doorbell intercom, portable doorbell, or baby intercom monitor (e.g. from ARGOS or MOTHERCARE) may be useful for this purpose. Some carers carry a mobile phone or pager so that they can be contacted when they are out. (IRISH)
• If you have trouble speaking on an intercom, you could work out codes: 1 beep means I am well enough to eat my lunch now while 2 beeps might mean something else. Working out an emergency signal is probably also a good idea. (HUMMINGBIRD)

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Carers

• If you rely on carers/Personal Assistants and are often too ill to explain what you want them to do, develop a system so that you can leave instructions when you are well enough. Some people use index cards, with each card having instructions about a particular job. Having detailed instructions written out also makes it easier when there is a new carer/PA. Another possibility is to leave a recorded message on a dictaphone or tape recorder. (IRISH)

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Celebrations

• Life with M.E. can be monotonous. One idea is to turn some days into gentle celebrations. If you would like to see in the new year, but can’t stay up late without ill effects, try going to sleep at the usual time on New Year’s Eve and getting woken up just before midnight. Birthdays and Christmas can be emotionally difficult. Re-prioritise your Christmas, choosing which traditions suit you and your illness, and dumping those that don’t. Try to do activities such as shopping, cooking, writing and wrapping up in advance so that if you are ill you won’t be worrying that there is so much to do. If you want to put a letter in with Christmas cards, writing just one and getting it photocopied saves time and effort (also good for thank you letters). Keep a supply of suitable cards, small presents and wrapping paper handy and use a birthday book or list. To avoid having to find the end of the Sellotape every time, use a dispenser (which can be used one-handed). (IRISH)
• You may find it more enjoyable to celebrate your birthday or Christmas over a two or three-week period e.g. stagger visitors or telephone calls and open cards and presents on different days. Use other people’s arms to open cards and presents if it’s easier for you. Presents are easier to open if they have the minimum amount of sticky tape, and tissue paper is easier to rip. Envelopes don’t always need to be stuck closed. Depending on the illness, it is possible to include people with M.E. in events such as weddings and parties which they are unable to attend. For example they may be able to look at photos, watch or listen to a video or cassette of a wedding, receive a phone call from a party or enjoy a piece of cake or buffet. Even a simple message or note to show that they were remembered can mean a great deal, and if the illness is severe this may be all they are well enough for. (IRISH)

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Chemical sensitivities

• If you have become sensitive to chemicals, make sure that you, and if necessary those around you, stick to unscented, non-aerosol deodorants, toiletries, and cleaning products. Try to find ‘natural’ alternatives. Bicarbonate of soda can be used as a cleaning agent, (it can be bought more cheaply from a chemists) and table salt as a scouring powder. White vinegar mixed half-and-half with water can be used to clean glass or remove scale and stains. Certain plants help to clean the air. New clothes might need a good soak and/or washing a few times to reduce the chemicals. Printed material, especially on shiny paper, can cause problems, but may improve after an airing. Open post in a different room so that you can get away from it if it causes symptoms. If your skin reacts, try wearing gloves. Read second-hand books instead of new ones, as some of the chemicals will have been released. If you react to other people’s perfume, deodorant etc. it may be possible to get a letter from your doctor stating that you have allergies or chemical sensitivities and listing problem substances. This can be photocopied and sent in advance to people who are visiting your house, asking them to avoid these things. It may be worth going to stay somewhere else if you or a neighbour are having work done. Some materials release chemicals for a short time and then stop, others continue off-gassing. (IRISH)

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Clothes

• If lying down for long periods, avoid garments with pockets or bulky seams. Jumble sales and charity shops sell clothes more cheaply, which is especially useful if you have difficulty finding clothes that are comfortable. Try out different types of garments to see which cause you the least pain or discomfort. You may be surprised and find that, for example, a lightweight silk shirt is better than a nightie or T-shirt. Slippery material slides easily over the skin and may irritate your muscles less; slippery clothes and sheets can also make it a bit easier to turn over in bed. Cotton clothes may be best for sensitive skin. Socks that would usually be considered too big might be better than a close-fitting size. Well-cushioned trainers may be more comfortable than slippers. There is no need to get changed in the morning and evening as long as you wear clothes that are comfortable enough to sleep in – change when you are well enough. Try not to be embarrassed if you are better off wearing nightclothes. You may be able to find some in a ‘daytime’ style, or try elasticated trousers and a T-shirt. Trousers which are loose around the waist can ease abdominal pain. Front fastening bras are easier to take on and off and cardigans are easier than jumpers. Fasten shoes by bringing your feet up on a chair or step rather than putting your head down. If you have difficulty with zips and buttons replace them with press-studs or Velcro (bear in mind that Velcro catches on some materials). A carer could do up most of the buttons before you get dressed, leaving the top one undone so that you can slip it over your head. Fleeces are warm and lightweight. Wearing several layers of thin clothes is more flexible for temperature control, or use blankets and a duvet. If you can’t wear long sleeved tops and don’t mind looking unusual in order to keep warm, try cutting the sleeves off a sweatshirt, hem the top of each sleeve with some elastic (not too tight) and wear the sleeves with a top you can tolerate. Alternatively, use leg warmers or a loose tubigrip bandage. Another option is to wear a shirt back to front – it is easier to take on and off while lying down and shouldn’t irritate your back muscles. Soft padding can be sewn into sleeves to give pressure relief for elbows. If it is difficult to get things washed, it may be worth having extra garments, sheets etc. (IRISH)
• Use a folding laundry rack which stands on the floor. Hanging the laundry above your head is often much too exhausting and with such a laundry rack you can even hang on your laundry while sitting. (INGEBORG)
• I find wearing shiny fabrics in bed helps me turn over just that bit easier. I am unable to turn myself at all if I wear flannelette or have flannelette sheets! The right fabric choice can sometimes just make the difference between being able to turn yourself or not - worth a try anyway! (HUMMINGBIRD)

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Computer

• There are several ways of making computers easier to use. A type of adjustable armrest is available. You rest your arms on them and then you can move your arms more freely (although it takes a bit of time to get used to). This can be used in combination with a computer keyboard that can be split and a foam pad to rest your wrists on. If you find using a mouse difficult you can get a large track ball where you use the whole hand. Alternatively you can use a small square pad where you point with your finger or a special pen instead of a mouse. A strong trolley that can slide over the bed may enable you to use a computer in bed. Some keyboards are specially shaped to reduce muscle strength usage. Tilt the screen so that you can use the computer in a more comfortable position. Software is available which is voice responsive, enabling the user to dictate into their computer and operate all functions, including E-mail, by voice. You can use a combination of voice, keyboard and mouse if you want to. Computers can be used for organising lists, appointments etc. Time and effort can be saved by using standard letters that can be sent to more than one person, and printed labels for addressing envelopes. (IRISH)
• If you have NMH and are struggling to sit up to use a computer, get a laptop or notebook computer if you possibly can so you can use the computer lying down in bed. Sitting up is just a waste when you could so easily lie down. I’ve also found that the glare from the computer screen is greatly reduced on a laptop. You can get reconditioned laptops for not too much money. If you can afford it – do it! (HUMMINGBIRD)
• NEW!!!! I have finally found a stand that lets me use my laptop/notebook computer lying completely flat in bed! Click here for more information. It's brilliant. The stand isn't cheap but it might be well worth it if you find it difficult (or impossible) to have to use your computer in the upright position. (HUMMINGBIRD)
• Did you know that (in Windows XP anyway) you can adjust some of the settings on your computer to make it easier to use? Things like making the text or cursor bigger and even changing the size of your scroll bars (which I would *really* recommend) and lots more. Even if you aren't that disabled it just makes working on your computer that much less effort. To make changes, go into Start, then All Programs, then Accessories, then Accessibility - then just follow the prompts on the Accessibility Wizard. You can undo any changes you make by running the wizard again incidentally. (HUMMINGBIRD)
• Online support groups are a must and there are so many now online. You can’t and shouldn’t have to go through this alone. It can take a while sometimes to find a group that suits you, it helps if you have illness severity in common among other things and sometimes you might have to join more than one group to find the right one for you. Click here for a list of some groups. (HUMMINGBIRD)
• Becoming educated about M.E. really is a must too if you are at all able. Understanding your symptoms lets you deal with them better and knowing a bit about the politics of the whole thing means you can argue your case better if you need to. You really need to be selective about what you read though – there’s a whole lotta crap out there! Click here to read some book reviews of some really great M.E. books or here to sign up for some M.E. research email groups. (HUMMINGBIRD)
• If you can’t sit behind the computer, print your emails and write your replies on paper and let someone type them and send them. If you have a laptop with no internet then use a disk to download your emails on and write also on this disk your email so someone then can put the emails on a computer with internet-connection and send them. (INGEBORG)
• I have a new computer system; a 19 inch TFT-monitor which is placed with an arm against the wall. The desktop is a few meters away in the tv cabinet. I use a trackball, you have them in different kinds and I have tried them all. The one I have now works best, the ball feels good and rolls real flexible and light. The keyboard I use is small and light, so light that even I can lift it! I turn on my pc by pushing the space-bar. With this system I am no longer dependent on other to use the computer (INGEBRG)
• If you have trouble with your vision I got the following tip from someone. You can adjust the font size on your computer to the size which is easy for you to read. I use this tip for several years now; it's so common for me that I don't see it as a tip anymore, but maybe some of you didn't know this tip yet. You can also adjust the screen of your computer (for example in word, outlook, excel etc) in for example a soft colour. White hurts my eyes and makes reading even more difficult. That's why I always have a soft window colour like soft yellow or soft grey. Of course it's also possible to get it in negative. I also got the following great tip from someone to disable all animated images and banners on all websites [which can cause huge problems in M.E.!!] => start Internet Explorer and Go to:
  - Extra
  - Internet Options
  - choose tab Advanced
  - scroll down to Multimedia
  - uncheck "play animations on web pages" (3rd option, it can have another name, I'm using the Dutch version of IE) (INGEBORG)
• I always loved making jigsaws, but since I am fully bedridden in 1998 isn't that possible for me anymore. You must be able to sit at a table or sit/lay on the floor. But now I have found a site where you can make jigsaws on your pc (online, but also offline). They have over 800 jigsaws and you can make each jigsaw in 32 different ways, for example easy 6 pieces or pieces in the shape of stars or lizards and even hard 247 pieces. If you want to make them offline you have to do it as follow: download the jigsaws you want to make, click each jigsaw down to your taskbar, leave your pc on when you want to make the jigsaws the next day. If you become a member you will get every day an e-mail with the link to the jigsaw of that day. They have really nice jigsaws, take a look at www.jigzone.com. (INGEBORG)

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Cooking

• Food processors, electric can openers, lightweight mixers, electric knife sharpeners and electric knives can make cooking a lot easier, but not all are practical or suit your particular needs. Take any opportunity to try them before buying. If knives are kept sharp it takes less force to chop food. Organise your kitchen so that the things you use most often are within easy reach. Make as few movements as possible when cooking a meal. Using a small jug to carry water to a kettle or pan, avoids lifting a whole pan full of water. Kettle tippers, available from disability catalogues, hold the weight of the kettle or jug to make it easier to pour. Eat simple meals requiring minimum effort to cook and prepare. Sit down wherever possible; potatoes can be peeled in an armchair. Keep a tall stool or office chair in the kitchen. Cooking vegetables in a wire basket in a saucepan saves lifting a heavy pan. When able, prepare extra quantities and freeze some for a later date. Portions of casseroles, mashed potato, cooked rice, ham, sauces for pasta, and fresh cream in ice cube moulds can also be frozen. Find out which fresh foods and vegetables freeze well. Keep a supply of convenience foods for bad days. A microwave is useful for re-heating. You may be eligible for social services help such as: meals on wheels, frozen meals delivery service, or a carer who will cook for you. If you are having visitors, think about getting a takeaway, preparing food in advance, asking guests to bring a dish or getting them to do the cooking. Paper plates and disposable knives and forks save washing up if you don’t have a helper. (IRISH)

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Doctors/Medical

• Work out what you want to say before a doctor’s appointment and write a list as a memory jogger. It might be worth taking a tape recorder and asking if you could record important consultations, in case you’re not well enough to take everything in at the time. If travelling is likely to be bad for your health do ask (and keep asking) for a home visit or contact by phone, letter or E-mail. You might be able to send a representative, such as a well-briefed friend or carer, and get it tape recorded in your absence. (IRISH
• Find out what you can about M.E., as your doctor may not know very much about it. Doctors, as well as patients, find this illness frustrating and difficult. You could ask your local group or contact if they know of any understanding doctors in your area. If you are very unhappy with your GP, you should be able to change. You can ask for a preliminary appointment with prospective new doctors, either for yourself or a carer to attend. Keep a handout of your medical history, your known allergies, what drugs you are on etc. as you never know what emergency might crop up. (IRISH)

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Door

• If you have difficulty answering the door, consider getting an intercom. This is also good for security purposes. You might like to give a front door key to some friends or neighbours. An automatic door opener has a buzzer and speaker grille by the front door connected to a ‘phone’ by the bed. You can speak to the visitor and then press a button, which releases the door catch, if you want to let them in. If you sit or lie in other rooms sometimes, you can have more entry phones fitted there too. It is also possible to have a switch fitted in the phone to enable you to turn the buzzer off when you do not want to be disturbed. There is another type of lock, where visitors can let themselves in if they know the code. However, this type doesn’t give you as much control over who enters your home. If you choose a combination lock, make sure you change the number initially as all locks of that model come fitted with the same code. Both these locks may be available through an Occupational Therapist. (IRISH)

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Drinking

• Kettle tippers, available from disability catalogues, hold the weight of the kettle or jug to make it easier to pour. Use a small jug to carry water to the kettle rather than carrying a full kettle. Lightweight china or plastic cups take less strength to lift. Drinking straws enable you to drink lying down or without holding the cup, and a long straw can be made by taping two straws together. Warm drinks can be drunk through a straw as long as they are not too hot. Wide straws are useful for thick soups. A cup with a spout may be helpful as they spill less, are lighter and can hook over your hand if grip is a problem. Some bottles have a nozzle lid - the liquid comes out slower and more controlled, so you can drink lying down. Keep a bottle of water next to the bed or chair (perhaps with a kettle tipper) so that you can refill the cup more easily. Thirst is a symptom of M.E. It may be worth taking water with you when you go out. Many people with M.E. find it better to avoid caffeine and alcohol. You might also decide to drink filtered or mineral water. (IRISH)
• Put a jug or bottle with water in it next to you so you don’t need to walk that often. If you have trouble holding for example a glass, get a bottle little children use, it’s not as heavy as a glass. Or use a water bottle or a so-called camelback. [A bag of water which sits above you with a straw which comes down for you to drink from]Nowadays there are even special mugs with which you can lay completely flat on your back, so you even don't need to lift up your head a bit. (INGEBORG)
• I like to have 3 1.5 litre water bottles on one table, and 4 glasses of water on another closer one. It means my carers don't have to be getting me water all the time, they just refill the bottles every 2 or 3 days. It also means that when I (or someone else) pours me a glass of water they or I can pour 4 at once which saves effort as well as reduces the amount of time I have to hear water being poured!! (One of the WORST things ever for hyperacusis - it's the tone *shudder*) (HUMMINGBIRD)

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Dust

• Dusting with a wet cloth rather than a dry one causes less dust to get into the air. (IRISH)
• An air filter with a HEPA filter is a good idea if you have a big dust allergy. They’re also meant to be able to remove mould spores as well and some even have carbon filters to remove chemicals from the air too to a certain extent. Just make sure you don’t get a really noisy one! (HUMMINGBIRD)

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Eating

• If you’re using that line about "I’ve had to give up so much, I’m not giving up nice food as well" why not just TRY a healthier diet for a few weeks or months (taking out the processed food, preservatives, wheat and dairy, yeasty and mouldy foods, foods from the nightshade family, and the sugar and white flour for example). You might notice such an improvement it’d be worth it - feeling a bit better really does ‘taste’ so much better than mere food ever could! (HUMMINGBIRD) A whole page devoted solely to diet is COMING SOON to this site!
• A thermos flask can be useful to keep drinks, soups or food in, because they can keep things hot (or cold) for several hours, which can save you or your carer time and energy. Plates with a lip are available which make it easier to eat certain foods with one hand (e.g. lying down). There are also non-slip mats to stop the plate sliding around. If eating a complete meal is difficult, try to eat little and often. This could be better for anybody, particularly if low blood sugar is a problem; although it’s not so good for teeth. Make sure you always have some food with you especially if you often feel faint. Keep an overnight snack by the bed. It might be worth taking water to drink when you go out. Soft food can be very helpful when recovering from a collapse, saving your strength for something big or if you are too ill to chew. Wide straws are useful for soups. Plastic cutlery, plates and cups are lightweight and also quieter than metal and china. A variety of adapted cutlery can be obtained some of which is bent at a particular angle. Others have built up handles for people with weak grip, although they may be heavier than standard cutlery. If you need an assistant to feed you, the long handles of knickerbocker glory spoons may save them having to lean over you. If you have a willing assistant and not too many allergies, food can play an important part in quality of life, especially if you spend a lot of your strength eating. Try out new foods and recipes, use an attractive bowl or cup, have sandwiches cut into interesting shapes. If you want to eat cornflakes but find them too crunchy, leave them in a bowl of milk until they get soggy. Heated muesli also loses some of its chewiness. People with very severe difficulty eating may benefit from liquid oral feeds or naso-gastric tube feeding. (IRISH)
• People on restricted diets may have a higher chance of developing an intolerance or allergy to that food, so try to eat as varied a diet as possible. Wheat and dairy products are the two most common intolerances, and many people with M.E. find it better to avoid caffeine, sugar and alcohol. If you suspect you may have food allergies or intolerances it might be worth seeking advice. A GP can refer you to a dietician. (IRISH)
• ‘Soft Options – for adults who have difficulty chewing’ by Rita Greer might be useful. This book has recipes and advice on how to adapt foods to make eating easier. Here are some tips from the book: A bowl and spoon are easier to manage than a plate with a knife and fork, but there is still quite a long way from the table to the mouth. If the bowl is held near the mouth then the problem is not so great. A spoon of a size between a teaspoon and a dessert spoon with a matching fork will probably be of most use. Some people who have difficulty chewing, require extra liquid with their food. This can be in the form of a sauce, gravy or a drink with the food. ‘Soft Options’ eaters should be encouraged to savour the non-chew food by holding it in the mouth and moving it around with the tongue if possible. It is important to lubricate the food with saliva that contains enzymes to start off the digestive process. There is a knack in feeding someone else with food. It needs to be done at the right pace, with the correct-sized spoonful. The food needs to be put into the person’s mouth, not just to the lips, with a large napkin to catch the inevitable spillage. Sitting facing someone to feed him or her is more difficult than at their side. The temperature of the food should be appropriate for the person being fed. If feeding takes a long time due to difficulties, divide hot food into two amounts and keep one half warm while you feed the first half. Food that is puréed or finely chopped will go down to half its original size. Bear this in mind when dishing up, as it is very easy to overestimate the portion and give people far too much. It is always worth taking trouble to present food attractively, especially if it is of a new kind. (IRISH)
• If you have trouble swallowing food, mix it and do some soup with it so it’s easier to swallow. This way you still get your vitamins and minerals.(INGEBORG)
• Always have a variety of foods at hand near your bed for emergencies; nuts, peanut paste and a spoon, protein bars, fruit - whatever you can handle. (HUMMINGBIRD)

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Environmental Control Systems

• These systems aim to make it easier to operate things like lamps, curtains, buzzers, door and telephone from a bed or chair. The Department of Health may fund equipment for people who are severely disabled. (IRISH)

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Funerals

• If you are unable to attend a funeral as you would like, it might be suitable to have a small ceremony of your own at home, perhaps at the same time as the main funeral. Light a candle (making sure it is safe), and remember the person who has died. A hymn, poem, photo, music and/or bible reading may be appropriate. (IRISH)
• Funerals can sometimes be arranged to be viewed over the internet on a live feed if you can't make it in person. It is also good to talk to people who did go to the funeral if you can, get them to tell you in detail what it was like. (HUMMINGBIRD)

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Gardening

• Consider keeping a chair outside so that you have somewhere to sit down without moving furniture. A raised flower bed enables one to do gardening from a wheelchair or seat. Think about how your garden might be adapted to reduce the amount of work, for example using paving slabs or gravel beds. A garden kneeler or seat might be useful. Pace yourself carefully and don’t be tempted to finish a job just because you started it. Consider having a tap in the front and back gardens. (IRISH)

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Grip

• Taps can be replaced with a long handled design. Tap turners from disability catalogues are a cheaper but generally less effective alternative. Some pens are designed to be easier to grip. Handles can be built up using padded racket tape from a sports shop. There is also cutlery with built up handles which are easier for some people, although they may be heavier than standard cutlery. Rubber gadgets for opening jars are available. Using a towel gives more grip than just using your hands. Kettle tippers, available from disability catalogues, hold the weight of the kettle or jug to make it easier to pour. Use a small jug to carry water to the kettle rather than carrying a full kettle. (IRISH)

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Hair

• Diluting shampoo with warm water makes it lather up more easily. A useful technique for washing hair is to sit on your bath/shower seat, bend forward and lean your arms and the weight of your upper body on your thighs. This way you can reach your head without having to hold your arms up. If you wash your hair in a shower, do it first so that it can be rinsing while you get washed. Dry shampoo can be sprayed on to hair and brushed out, making unwashed hair look a bit more presentable. Try rubbing flour into greasy hair as a dry shampoo. Alternatively, just wash the fringe, and perhaps tie it back if you have long hair. Short hair is easier to wash. Having someone else wash your hair saves relapses; don’t deny yourself the pleasure of clean hair for the sake of false pride; even healthy people have help at the hairdresser. There are several designs of trays to enable an assistant to wash hair more easily at a sink or in bed. The ones for use in bed can be solid plastic or inflatable. Ask an Occupational Therapist, who may be able to provide one, or buy one privately from a disability catalogue. Another method which you may find less uncomfortable than using a tray is to lie on your front with your head over the edge of the bed. Place a pillow under your chest with plastic on it so it won’t get wet. Put plastic on the floor and a big bucket on the floor under your head. An assistant can then pour water over your hair with a jug. A hair dryer can be stuck in a toothbrush and mug holder so that you only need to move your head when drying and don’t have to hold up the dryer, but don’t use electrical appliances in the bathroom. Leave hair to dry naturally to save effort, putting a towel on your pillow or round your shoulders. It is quite possible to live happily without having a hair-wash at all. Some hairdressers do home visits. If sitting up to have it cut is a problem, have a style that will look fine if it doesn’t get cut for a while. It may be worth pacing a hair cut by having a short rest halfway through. You could ask the hairdresser not to chat and to place more importance on speed than perfection. (IRISH)
• If you can’t shower and you don’t have a bath but you want to wash your hair then lay down on bed with your head over the side. Lay some kind of plastic on the floor before the bed, put a big bucket before the bed and fill a small one with warm water. It’s more comfortable if you lay on your belly; if you lay on your back you get cramp in your neck because of holding your head up, that's also why I can't let my hair wash in those inflatable hair wash basins for in bed. Lay a pillow underneath your chest with plastic over it so it can’t get wet. Lie down on bed and let someone flush water over your head with a big jug or something, let her/him wash your hair and flush again water over your hair while hanging with your head above the big bucket. (INGEBORG)

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Headaches

• A cold flannel or ice pack may help, or alternatively a hot wheat pack. Eye masks (containing blue gel), can be cooled in the fridge or heated. Putting one hand on your forehead and the other behind the back of your skull can be soothing for headaches or use a bandage for a similar effect. Look for things that might be triggering the headaches such as mental activity, noise, sleep disturbance, over-stimulation, stress or particular foods (commonly cheese and chocolate). (IRISH)

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Holidays

• Packing in advance when you are well enough reduces the pressure. Make sure the accommodation is suitable, for example you may need adequate heating, nearby parking, wheelchair access or a lift. You may feel worse than usual after a journey and so be less able to tackle stairs, walking and general activity. Travel at off-peak times to avoid predictable traffic jams. Self-catering accommodation or a camper vehicle enables you to rest and get up when you like. Enlist help so that you can take most of your food with you to avoid using up your abilities shopping. Your holiday destination may be quieter if you go at an off-peak time of year. (IRISH)
• If travelling is difficult, stay somewhere close to home or have a virtual holiday at home. You might like to base your virtual holiday in a particular place. Look at pictures of that place and eat appropriate foods (such as croissants, baguettes, garlic and cheese if you ‘go’ to France). Having decorations or pictures put up in your room changes the scene if you are up to the stimulation. Another possibility is to have a project holiday where you could spend a week at home learning about a particular topic, or doing something you enjoy. Short ‘holidays’ of a day or two may be easier to arrange and can be spread throughout the year. It is harder to switch off if you are still at home, but treat it as you would any other holiday. Although you can’t get away from your symptoms and limitations, you may be able to have a break from other difficult things. (IRISH)

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Household

• Consider getting a dishwasher, if funds permit. Long-life energy-efficient bulbs need replacing less frequently. If you are thinking of moving house, look at bungalows, ground floor flats and houses with a downstairs toilet, which could enable you to live downstairs most, or all of the time. When decorating it is worth bearing in mind that busy wallpaper will be more stimulating. (IRISH)
• At my bed I have a connector with power-points and an on/off-switch. In the connector sits 1 plug on which the 2 lights I have are connected. If I want the lights on I push the switch to 'on' (meaning power available), if I want them off I of course push the switch to 'off' (no power). With the heating I have the same problems as with the lights and beside that the control for the heating hangs too high for me to reach it from my wheelchair (this is also with the controls of the big lamps like the spots hanging down from the ceiling). This is solved with a bell thermostat and of course it has been put lower in wheelchair-height. The bell thermostat is now been put on 2 stand (it has a max. of 8 stands); the first stand is the time I usually just about awake and the 2nd stand is when I go to sleep, both of course with a different temperature. You can also operate the thermostat with the telephone or computer, but this has still to be sorted out for me. (INGEBORG)

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Ironing

• Look in the local press to find out whether your area has an ironing service that will collect things from your home to be ironed. Sitting down to iron takes the strain off your legs. If you have plenty of space, consider leaving your ironing board up. Buy non-crease clothes and don’t iron anything that doesn’t really need it. (IRISH)
• Learn to live with wrinkled clothes - the ones you have from pre-illness, then ONLY buy things from then on that don't need ironing! I think even healthy people should do this - life is too short to be wasted ironing!!! (HUMMINGBIRD)

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Light Sensitivity

• Many sunglasses let in light at the sides; if this bothers you look for a ‘wraparound’ style. Prescription sunglasses can be obtained. There are also wrap-around sunglasses that fit between your glasses and eyes (ask an optician), and others which will go over the top of glasses.(IRISH)
• A baseball cap or sun-hat shades the eyes (preferably with a dark coloured peak which reflects less light). Blindfolds/sleep masks are available from some chemists (e.g. SUPERDRUG), or if you know someone who is travelling, airlines give them out on long flights. They can also be improvised or home made using several thicknesses of cotton folded with aluminium foil. Some lampshades (e.g. ‘up lighters’) diffuse the light more than others. Several lamps with low watt bulbs are easier on the eyes than one bright one. Dimmer switches (which buzz a little) and different coloured bulbs may also be worth a try. Bulbs can be bought with a silver coating, which reflects the light upwards so it is more dispersed. If your light sensitivity is severe, you may find indirect light best, perhaps from an electric night light, candle, torch or illuminated globe. Blinds reduce the glare of the sun without making the room dark. Blackout curtain lining and blackout blinds are available. Some specialist blackout blinds are sealed at the edges and can be used to make the room pitch black, but new blinds release chemicals for over a week after installation. The father of one girl with M.E. turned her bed into a four-poster. She uses the curtains when the light in her room gets too bright. (IRISH)
• If you can’t tolerate light very well, put on your sunglasses, this is also more relaxing when you watch TV. If you can’t tolerate light at all, get an eye mask. (INGEBORG)

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Memory

• Write lists and notes to yourself and keep them in a place where you won’t lose them. A computer, dictaphone, personal organiser or Filofax might help. Small photo albums are good for storing flat items you want to have at hand such as notes to yourself, stamps and address stickers. Try having a pen and paper in each room. Before making a phone call write a brief memory jogger to say who you are ringing and what you want to say. This is also a good idea for doctor’s appointments or any situation where you might forget something important. You could also ask to tape record a consultation so you can listen to it again afterwards. Make sure you keep a record of all appointments in a diary or calendar. If you have difficulty keeping track of time, try a watch that beeps regularly. Set a timer to remind you to stop an activity before you do too much. Set an alarm for your favourite television programme or other time you want to remember (if necessary, write a note of what it was for). Most mobile phones now have a reminder option as to some computer pages. If you tend to forget where you are going and get lost, write out directions to frequently visited places. Pillboxes can be obtained with different days and/or times on the lids, so that you can tell if you have taken your tablets (ask a chemist). (IRISH)
• If you have a M.E. affected brain, notebooks can be kind of like little spiral-bound external brains - if you don't use them already, get some!!! I have one beside my bed, 2 beside my daybed as well as 2 whiteboards and a few lists on the computer too. I do still forget lots of things but I wouldn't remember to do anything at all without them! (HUMMINGBIRD)
• Try to get into the habit of putting things back in the same place after you use them - even if it does make you look like a control freak to those around you - it really is the only way to remember where all your stuff is if you don't have a memory anymore. (HUMMINGBIRD)
• Get a pill box with at least enough compartments that it’ll last you a week. Life is just too short to mess with pills more often than you have to! Mine last me for a fortnight, it’s so much easier than doing all your meds one by one each day – you’ll never go back! (HUMMINGBIRD)

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Nature

• A bed, mattress (on a ground sheet) or sun-lounger set up outside may enable you to enjoy some fresh air for a bit. Here are a few ways to experience the great outdoors inside: ask people to bring autumn leaves, conkers and fir cones; a bit of snow, hail or ice; or a shell or pebble if they visit a beach. Spend time looking at a photograph or painting of a landscape, a postcard or a picture book. Some relaxation tapes use imagery and recording of appropriate soundscapes and can provide an atmospheric background to a picture of the sea, a wood or a rainy day. Use nature programmes on TV or radio. Grow some seeds (with help) on windowsills, and ask a friend or relative to plant them out. If you grow bean sprouts or cress, you can eat them as well as watching them. Flowers are nice if you’re not allergic to them. You may be able to ask someone to bring a snail, ladybird, worm or caterpillar to visit. (IRISH)

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Neurally Mediated Hypotension

• You can get a wedge of foam custom cut at any custom foam shop to put under your legs and raise them up to help with NMH. They really help. Mine is 60cm x 60cm x 17cm. Make sure you get firm foam. (HUMMINGBIRD)
• Support socks help with NMH too. Jobst ones are good, as are the hospital issue ones. (HUMMINGBIRD)
• If you have NMH and are struggling to sit up to use a computer, get a laptop or notebook computer if you possibly can so you can use the computer lying down in bed. Sitting up is just a waste when you could so easily lie down. I’ve also found that the glare from the computer screen is greatly reduced on a laptop. You can get reconditioned laptops for not too much money. If you can afford it – do it! (HUMMINGBIRD)
• I have finally found a stand that lets me use my laptop/notebook computer lying completely flat in bed! Click here for more information. It's brilliant. The stand isn't cheap but it might be well worth it if you find it difficult (or impossible) to have to use your computer in the upright position. (HUMMINGBIRD)

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Noise Sensitivity or Hyperacusis

• Hyperacusis (severe noise sensitivity) is a huge problem for me (as you’ll know if you’ve read my "Day in the life of severe M.E." and about the only thing I’ve found that helps is my noise-cancelling headset. It plays white noise – the sound you hear between songs when you listen to cassette tapes. They don’t block out really loud noises but they do make a huge difference. They are pretty expensive but well worth it if your hyperacusis is really severe. I can’t tolerate normal headphones or earplugs at all but these ones are very comfortable to wear. You can get them from www.bose.com and last time I looked they have a deal where you can try them for free at your home for 21 days. See also: www.sony.com They can also be attached to your Walkman or computer for really clear sounding music and double the noise blocking capabilities! If noise is very severe and the headset isn’t blocking it all out (or you don’t have one) playing music over the top of it can help. If you are really neurologically overstimulated and not well enough for normal music I find certain types of classical music can be much better tolerated. You need to make sure you get a CD of really slow and mellow ones though - no crashing cymbals and marching music! The other thing that’s helped the hyperacusis is installing thick solid doors internally and externally and attaching rubber seals to them as well so that the room is kind of airtight. They block out quite a bit of the noise but of course, are fairly expensive as well so not for everybody. I also keep a small stereo with a remote control near my bed so that if I’m woken up by loud noise I can lessen the impact by putting the radio or a CD on straight away. Of course the noise is still there, but nicer noise over the top of it does seem to help the hyperacusis a little bit somehow. Plus, just knowing you have some option, some action to take when agonising noise hits, can help somehow too. Stops you feeling so powerless to the pain. (HUMMINGBIRD)
• Try earplugs, headphones or cotton wool. Ear defenders are available from building suppliers or gun clubs, and may be more comfortable than earplugs. Prices range from around €7to over €150 (approx), some of which have a built in radio. If you need to wear ear defenders a lot, you may end up spending much time lying on your back, in which case watch out for pressure sores. Sundays tend to be quieter than weekdays so it may be a better day to do things like going outside. There is also some predictable variation of noise level over the course of the day; quietest in the middle of the night and never quiet during the rush hour. Many electrical appliances hum so it might be worth thinking about this when buying a new appliance. The literature about some appliances includes noise levels during operation. Consider turning off plugs or central heating while you rest if they disturb you. (IRISH)
• Properly sealed double-glazing cuts out more noise than single. Apparently, up to a point, the bigger the space between the two panes of glass, the more the noise level will be reduced. It is worth seeking professional advice from someone who knows about noise reduction if you are considering replacing windows. You may choose a window with a large opening section so that you can have a change of air quickly with the minimum of exposure to outside noise. (IRISH)
• It may be worth trying to escape temporary severe noise by going to stay somewhere else. Write a respectful letter to your neighbours explaining that your illness is affected by noise and asking for their help in one or two specific and realistic ways. For example, ask if they might be able to let you know beforehand what dates they expect to use noisy machines. (IRISH)
• Plastic cutlery is quieter than metal. A ‘Do Not Disturb’ or ‘Quiet Please’ sign can let other householders know when you particularly want quiet. You might find that some rooms in your house tend to be noisier than others; it may be worth using the quietest room as a rest room. Other family members may be willing to use headphones when they are watching TV if the noise affects you. Some people with M.E. watch television with the sound off (some sports and nature programmes are suitable for silent viewing), although the high-pitched noise may still be too much. Try subtitles on Teletext page 888. Using a tape-head cleaning cassette reduces the buzz from the tape recorder. M.E. groups may like to try an idea from the Deaf Community and use waving as a quiet alternative to clapping. (IRISH)
• If you can tolerate noise sometimes but no music, there are also relaxing-cd’s without music with only rain for example. This is really relaxing, as far as you can relax. If you can't tolerate noise at all, you can try ear plugs. The earplugs I use now are so called swimming/water-earplugs which are being adjusted to your ear. They do it at home, at least they did with me. You first lye on 1 ear while they put some kind of liquid rubber into your ear. This has to harden before they can pull it out of your ear and then the other ear will be done. Normal swimming/water-earplugs are kind of small, but my earplugs also cover the ear-entrance. This way less sound can come in. You sometimes have to maintain the earplugs by putting them in a bit oil (olive oil for example), this way they don't dry out and don't break in 2 that easily. If you also use the earplugs when sleeping as I do, then ask for the softest rubber... the harder the rubber, the less comfy to lie on, but it may still take a while to get used to. (INGEBORG)
• I like to have 3 1.5 litre water bottles on one table, and 4 glasses of water on another closer one. It means my carers don't have to be getting me water all the time, they just refill the bottles every 2 or 3 days. It also means that when I (or someone else) pours me a glass of water they or I can pour 4 at once which saves effort as well as reduces the amount of time I have to hear water being poured!! (One of the WORST things ever for hyperacusis - it's the tone *shudder*) (HUMMINGBIRD)

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Opticians

• Some opticians provide home visits for people who cannot visit the practice due to illness or disability. Flexible metal frames (‘Flexon’) are expensive, but more comfortable to wear lying down. (IRISH)

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Over-Stimulation

• With M.E. it becomes difficult for the brain to process information and to filter out excess stimuli. If you often find yourself over-stimulated and unable to rest properly, observe when this happens. Are there any particular things which tend to trigger it, or any activities which help or which do not trigger it? Television, noise, caffeine and clutter are all stimulating. Some activities are more stimulating than others. I find skim reading particularly bad as my brain can’t select only the words I want to see and gets overloaded. You may find gentle physical activity, such as having a wash, less over-stimulating than mental activity; it may help to alternate the two. Try to pace your activities carefully and do only one thing at a time (See section on Pacing). Stress can contribute to the problem of over-stimulation, so look at ways of reducing and managing stress (See Coping Strategies). Practice relaxation techniques to help you rest as deeply as possible. Wearing a blindfold and earplugs or ear defenders during rest periods minimises the stimulation reaching your brain. Blindfolds are available from some chemists, or if you know anyone who is travelling, airlines give them out on long flights. Once over-stimulated you may need a long rest to give your brain time to wind down. Frequent short rests may help you to avoid becoming over-stimulated. The place where you spend the most time should be as visually peaceful as possible. You may be able to position mess so that it is out of sight or cover it with a sheet. Bookcases are visually busy so they do not calm the overactive brain. Putting a piece of material in front can be enough to make it more restful (choose a quiet design). This can be put on a curtain rail or attached to the bookcase with Velcro or hooks. When decorating, it is worth bearing in mind that busy wallpaper can be over-stimulating. You might also prefer plain bedding. If you are sensitive to touch and find showering difficult, see if it helps to bounce the water off your hand onto your body. (IRISH)

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Pacing

• Split tasks into small manageable chunks and do a bit at a time. Think about how each activity might be done in a more efficient way; for example many things such as ironing and teeth brushing can be done sitting rather than standing. (IRISH)
• Decide which jobs actually need to be done and do any vital things first in case you become too ill to finsih. Try to leave more than enough time and effort to complete each task. Hunting for scissors or keys wastes time and effort, so have homes for different items and try to keep organised.(IRISH)
• Use equipment that will save your strength, such as a wheelchair. Use other people’s health and try not to feel shy about asking for help. If finance permits, employ people to do domestic jobs. You can be selective, for example employ someone to dig the garden but you may be able to do some of the lighter work, such as planting out bedding plants. (IRISH)
• Alternate activity and rest. You may well find that you can do more of if you do an activity in short bursts. For example it is better to listen to a talking book for fifteen minutes then have a rest before listening to a bit more, than it is to listen to half an hour in one go and feel very ill. A countdown timer or alarm clock will remind you to rest and may help you to avoid doing too much, especially when doing something you enjoy or want to complete. Alternate different types of activity, particularly physical and mental tasks, so as not to overuse your brain, legs, arms or whatever. (IRISH)
• Many people find it helpful to keep a diary of their activities. Use it to learn about your individual illness, how much you are able to do, and what things make your M.E. worse. Listen to your body and respect what it is trying to tell you. Never be afraid to decline an invitation or visitor or to refuse a request if you are not feeling well enough. Try to be flexible and change plans according to how well you are. Plan big events carefully, preparing things in advance so that you can manage your illness as well as possible. Sometimes it is worth feeling really ill as a result of doing too much, in order to do something special. It is up to you (and nobody else) to decide whether a certain activity is worth the recovery period. Learn to be assertive about your needs. It is easier for those around you if you recognise and respond when you need a rest. (IRISH)
• When trying out a new activity, start by doing it for a short time that you know you can manage. If it is OK, experiment with doing it for a bit longer next time, cautiously testing your limits. Be realistic about your limitations and don’t over-estimate what you can do. It is sometimes recommended that people with M.E. should do only about 80% of what they think they can do. This leaves a bit of leeway for unpredictability and may actually give the body a better chance of improving. Although pacing is very important for living with M.E., no-one paces well all the time - don’t be too hard on yourself when you don’t manage it as well as you had hoped. (IRISH)
• It is also really important that if you get the flu on top of your M.E. that you rest. Even 'normal' people have had fatal heart attacks because they exercised/overexerted themselves while they had the flu. Those of us with pre-existing M.E. related heart problems may be at an even greater risk so if you have the flu, rest is not optional - do not exercise or exert yourself at all! Why take the risk? This whole marketing message we're continually being fed to 'take drugs and keep going through the flu' is just plain dangerous. (HUMMINGBIRD)

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Pain

• Heat or cold can help with pain. Try an electric heat pad, wheat pack such as a ‘Hot Bot’ (which can be used hot or cold), hot water bottle, cold flannel or ice pack. If you get attacks of chest pain, look for possible triggers such as exposure to chemicals. Some people find a bath soothing and a foot spa may relieve aching feet. Try cold (or hot) drinks for nausea or sore throats. Pressure relieving measures can be beneficial for painful muscles or joints and for general comfort as well as for prevention of pressure sores. Alternate different types of activities to give different parts of your body time to recover. For example if sitting up causes pain, do it for short periods at a time, interspersed with rests or activities you can do lying down. If, after an activity, the pain is bad or you feel more ill, try doing it for a shorter period next time. You may well find that you can sit up for longer altogether, if you do it in short bursts, than if you sit up for long enough to cause a flare up of symptoms. Sleep disturbance can exacerbate pain, and vice versa, so strategies and treatments aimed at minimising sleep problems may indirectly help with pain. Pain clinics have helped some people (they need a GP referral). (IRISH)
• Electric heat packs are BRILLIANT!! They are around half the size of a pillow and they are good for period pain, cold fevers, cold feet, pain and just for warming you up! They’re also very handy for when it gets colder suddenly and you can’t get up to get another blanket …and they just feel nice and any part of you feeling ‘nice’ when you have M.E. is pretty rare! I think they’re a must have. (HUMMINGBIRD)

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Paperwork

• If possible keep papers in a place where you will not have to look at them when you are trying to rest. Try to file things promptly so they don’t get lost. A4 tidy trays are useful if you can’t lift files. Write to organisations that keep sending junk mail, and ask for them to remove you from their mailing list. A Filofax or computer may help you to keep lists and notes organised. It may be easier to have regular bills paid direct from a bank account (standing order or direct debit). (IRISH)
• Using a letter opener saves effort and fitting a cage to the letterbox means you don’t have to pick up mail from the floor. (IRISH)

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Parking Concessions

• If you are able to drive but have considerable difficulty in walking, it may be worth applying for a parking permit for people with disabilities. (IRISH)

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Passive Physio

• Careful passive physiotherapy with the aim of keeping joints mobile and maintaining the angle of foot to leg can be worthwhile for some people who are bed bound. When lying down or sitting, the Achilles tendon shortens. The foot can be propped up with a bolster pillow in bed in order to lengthen the tendon. A physiotherapist may be able to advise carers on how to move the M.E. sufferer’s joints passively. Splints may be used for contractures in the hands. (IRISH)
• If you feel able to try some exercise, modify basic exercises so that they can be done safely. Be aware that even gentle stretching and relaxing while in bed can be beneficial compared to no exercise at all. But if some muscles are particularly painful, do not exercise them until they have settled down.
• A brief routine of stretching and breathing exercise at bed-time may help alleviate sleep disturbances.

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People

• Practice being assertive about your needs, this involves communicating clearly and respectfully. It is easier for those around you if you recognise and respond when you need to rest. Try to be patient with people, many don’t know how to treat people who are ill or disabled. They may not be willing or able to face the changes in your life. Learn about how to look after your health and be realistic about your limitations. Don’t let anybody persuade you into trying any treatment which you are not happy with. M.E. can be very isolating. It might be worth looking out for others locally who are also isolated for whatever reason. Many people with M.E. appreciate having contact with other M.E. sufferers, either through their local group, by phone, letters, E-mail or talking letters recorded onto cassette. It may be easier to explain about your illness to friends and relatives in writing, in your own words, or using leaflets, articles or books on M.E. Keep a handout of your medical history, your known allergies, what drugs you are on etc. to help with communication in an emergency. (IRISH)

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Pets

• ‘Furry therapists’ are great companions and pets are known to reduce stress (as long as you are not allergic to them). One person with M.E. likes to break the good news to her dog when it is time for him to be fed or taken for a walk. A friend may be able to bring their animal to visit you, or you could perhaps have a ‘part time pet’ – looking after an animal when its family are away or at work. Cats take less effort to look after than dogs. (IRISH)
• • A cat needs less cleaning and care and still you get attention, they love to lay on your bed beside you. (INGEBORG)

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Pressure Sores

• Pressure sores can occur when the cells in the skin and tissues become damaged by insufficient blood supply. This usually happens when a person has been in one position for a long time. They can also be caused by friction or shearing, for example sliding down in bed. Pressure sores can lead to pain and infection, but fortunately they can often be prevented. (IRISH)
• If you are able to get up briefly sometimes (e.g. to walk to the toilet), this will help to prevent sores. Otherwise, try to change position every hour or two, perhaps using pillows to redistribute the weight away from bony areas. If sitting in a chair, rock from one buttock to the other for a short time. A pressure-relieving mattress, mattress overlay or a special cushion can be useful to distribute your weight more evenly and may also be more comfortable. When moving try to avoid dragging your skin across the bed or chair. If this is unavoidable, consider different techniques such as using a transfer board or hoist. (IRISH)
• Watch out for feelings of numbness or a reddening or darkening of the skin (especially if it stays red when pressed). If this happens, take the weight off that area to give it time to recover. (IRISH)
• Crumpled sheets and crumbs can cause problems, so it's good to have the bed re-made. Keeping clean is also helpful, if you're well enough, especially if you have incontinence or are sweaty. A healthy diet and plenty to drink with enough rest and sleep are all recommended. (IRISH)
• If you think you may have a pressure sore, contact your doctor or district nurse. (IRISH)

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Reaching

• There are devices called ‘grab-sticks’ or ‘helping hands’, which have a claw on the end to help pick up things which would otherwise be out of reach. Some versions have a magnet for picking up small metal items. They come in two lengths; the longer ones often have a supportive wrist cuff. (IRISH)

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Reading

• Large print may be easier to read. Some companies will send bills in large print, or on cassette, on request. Try a large magnifying glass for small writing. A reading aid can be made out of a piece of plain card. Cut a slit in the card and place it over the page so that only one line of print is visible at a time. This cuts out the distraction of all the other words on the page. Or simply hold a bit of card under the line you are reading to help stop you jumping lines. Read small manageable chunks – listen to your body; don’t push through the symptoms (easier said than done, of course). You may find short stories, children’s books, comics, cartoon books or poetry more manageable than a novel, or try books on cassette (see Talking books). There are computer programmes which can speak text from the screen. (e.g. ‘Text HELP! Read and Write’). Ask other people to read aloud to you. Letters can be sent on tape. When reading through a text it is sometimes useful to highlight important passages for ease of future reference. You may find it easier to read while lying down, and printing text onto coloured paper can also be helpful. I find skim reading particularly over-stimulating, as my brain can’t select only the words I want to see and gets overloaded. To avoid skimming when looking at an index, focus on one word then jump to another word and read it properly, rather than scanning lots of words. Keep jumping until you get close to the word you are looking for. When searching for a particular page number in a book, keep your gaze on the numbers only; take care not to look at the rest of the page until you get to the one you want. If holding a book is difficult there are many designs of bookstand, which vary in their effectiveness for different sizes of book. Some local libraries operate a delivery service for housebound people and they may have large print books and also books on tape. (IRISH)
• A ‘Page Up’ is a small gadget which holds a piece of paper (or several) Website: www.mypageup.com (IRISH)
• Coloured overlays to place over text when reading have been found to reduce visual stress and increase reading fluency in about 20% of school children. In M.E., light sensitivity may contribute to reading difficulties, and overlays may reduce the effects. (IRISH)

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Resting

• Resting is part of pacing. You may well find that you can do more altogether if you do an activity in short bursts and stop to rest before the symptoms flare up. (IRISH)
• Your need for rest will be individual so experiment to find out what works best for you at your current level of health. Some people benefit from having rest periods at set times every day (including good days). This could be in form of one long rest in the afternoon, or many shorter ones spread throughout the day. If well enough, you might be able to rest adequately sitting quietly in a comfortable chair with your feet up, or you may be better off going to bed to rest, especially if you live in a busy household. When in other people’s houses ask to lie down if you need to. Listening to the radio, talking, reading and sitting up are not resting; remember that M.E. brains need rest as much as M.E. bodies. (IRISH)
• Rest will be more effective if you relax as deeply as you can. Turn off the phone or use an answering machine to avoid being tempted to jump up in the middle of a rest. Also turn off central heating and electrical appliances if they disturb you. A ‘Quiet Please’ or ‘ Do not disturb’ sign can let householders know when you particularly want quiet. If it is noisy, try earplugs or ear defenders (see noise sensitivity). A blindfold/sleep mask or a darkened room may be helpful. Blindfolds are available from some chemists or if you know anyone who is travelling, airlines give them out on long flights. (IRISH)
• Make sure you are warm or cool enough, lie down flat and close your eyes. Try to get as comfortable and fully supported as you can, perhaps using extra pillows or rolled up towels by your sides, and under your arms, knees, or legs (slightly raising the legs relieves tension in the lower back). (IRISH)
• Learn meditation or relaxation techniques to improve the quality of rest and help you cope with the frustration. To find an approach that suits you, try listening to several different guided relaxation recordings. In time you will be able to practise relaxation without needing a tape and you may find silence more relaxing. If you are too ill to listen for more than a couple of minutes, you might like to play short pieces of relaxing music before a silent rest. Some people find recordings of rain and other soundscapes easier than those containing music or speech. You may find familiar pieces of music are more restful than pieces that are new to you. It may also be easier to listen to a recording of one or two instruments, rather than many different parts. (IRISH)

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Shopping

• Some major stores have a first aid room where people with M.E. can rest. Ask for help; for example shop assistants may be willing to carry things to the car for you. A shopping bag on wheels saves carrying, and some designs have a seat on the top. It is possible to borrow wheelchairs at some large shops, and also an assistant to push you. (IRISH)
• There is a lot of sensory information for the brain to process in a supermarket; you may find smaller shops less exhausting. Make a standard shopping list for regular items and photocopy it, then you can just add other items you need. Some shops will deliver to people’s homes and others are willing to put together your order so that you only need to get it collected. Have heavy items delivered or collected for you. Buying in bulk is cheaper, and reduces the number of times you (or your helpers) have to shop. If you have milk deliveries, they may also deliver drinks, eggs and potatoes. Many things can be bought by mail order, including food. Some high street shops are able to take orders over the phone using a debit or credit card and then send it to you by post. Write down details of your order so that things can be chased up if necessary. Some large stores have magazines that can keep housebound people up to date with new products. Many shops can now be accessed via the Internet. When ordering food over the phone, it is not always necessary to struggle with a catalogue; if you explain your disability some people are very willing to help. (IRISH)
• If you’re trying to buy appliances or anything substantial over the phone or in person, don’t forget to try to bargain (or get someone else to do it on your behalf if you can’t). Very often they’ll reduce the price by quite a lot, they want your business and are quite happy to reduce the price to get it if you just ask. I recently just saved 130$ on my air filter and 125$ on a new stereo just by asking!! I didn’t even have to talk them into it or offer reasons – it really surprised me. Their advertised prices really aren’t what they expect you to pay sometimes. It can’t hurt to try. (HUMMINGBIRD)

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Sitting

• If you are able to do jobs like ironing or cooking, these will take less out of you if you sit rather than stand. Sit to brush your teeth, wash etc. Walking sticks with a built in seat are available; many people with M.E. use these for going out so that they can sit down when they need to (see Walking). Keep a chair in every room, so you are able to sit down while you are doing things. A tall stool or office chair can be very useful in the kitchen. An electric riser-recliner chair is a help to some people. Putting your legs up, perhaps on a high footstool, aids the circulation. It may also help to have a little walk around occasionally. You might find it easier to sit on the floor than on a chair, and this has the advantage of always being at hand. Some people with M.E. find beanbags more comfortable than chairs, or try sitting or lying on cushions on the floor. An inflatable armchair is lightweight and easy to move around. (IRISH)
• When sitting, try to get your body as fully supported as possible on either side, behind and underneath, by using a few extra cushions or a V shaped pillow. V-pillows (which are available from disability catalogues and ARGOS) are often recommended but you may find that they push your head forward awkwardly. A solid foam wedge is another possibility for use in bed. It keeps your back straight when you sit up only slightly. Some catalogues also sell these, or you might be able to obtain one more cheaply from a shop which cuts foam shapes. An inflatable neck support pillow is good for some people. They are often sold as travel pillows. If you can use your arms but have difficulty manoeuvring to sit up in bed, a rope ladder bed hoist may be of use. This consists of strong nylon rope and plastic rungs. It fastens to the legs of the bed and lies over the top enabling you to pull yourself up into a sitting position. They can be obtained from disability catalogues. There are electric mattress raisers (for single beds) or electric inflatable pillow lifts, which enable people to sit up in bed by pressing a button. A bed, mattress (on a ground sheet) or sun-lounger set up outside may enable you to enjoy some fresh air for a bit without having to sit up. (IRISH)
• A lot of people with M.E. have great difficulty sitting up even if they are very well supported. As with other activities, sitting up needs to be carefully paced if the M.E. is severe. People with M.E. may get an overwhelming need to lie down urgently which can be difficult if there are lots of pillows to get rid of. Be alert for warning signs if you are liable to get this symptom. (IRISH)
• There are a number of pieces of equipment designed to aid transferring from a wheelchair to a bed or chair. If you are able to stand a little with assistance, there are turntables to put under your feet. Alternatively a transfer board may be useful if the seats are of compatible height. One end of the board goes on the wheelchair seat, the other on the bed or chair, creating a continuous surface to manoeuvre along. A cushion may be used to make a low seat higher. There are specially designed chair or bed raisers which can be put under the castors if you find it easier to rise from a high seat. Some chairs have an electric seat which moves to assist you into a standing position. A hoist may be required if you need a lot of help with transferring. (IRISH)

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Sleep

• If you find a bath relaxing, the evening can be a good time to have one, to help you unwind before settling to sleep. Having a small supper (preferably complex carbohydrates such as wholemeal bread) may avoid a blood sugar low in the night. Keep a snack such as a banana by the bed in case you get hungry during the night. Comfort is important and poor sleep may mean that the bed or mattress needs replacing. Avoid anything stimulating for a couple of hours before settling to sleep (e.g. bright lighting, tea, coffee, coca cola, TV – especially exciting or distressing programmes). (IRISH)
• Earplugs may help you to sleep through noise. Using a commode at night may be less likely to keep you awake than walking all the way to the toilet. (IRISH)
• Spending time awake in bed can contribute to difficulty sleeping, but this cannot be helped when you have M.E. and need good quality rest. Having two beds – a ‘day bed’ and a ‘night bed’ gets around this problem; or if this is not possible try sleeping with your head at the foot of the bed so that you are in a different position from the daytime. With luck your brain may come to associate the night bed or night position with sleep. Opinion is divided about lie–ins and daytime naps – some doctors advise avoiding them and others feel that people with M.E. should sleep whenever it comes. Experiment to find out which is better for you. Try settling at a similar time every day; with M.E. one late night can be enough to disrupt sleep patterns for weeks. (IRISH)
• If you can’t get enough sleep because of light, these tactics might be worth trying. Try wearing a blindfold/sleep mask, which are available from some chemists, or if you know anyone who is travelling, airlines give them out on long flights. In the long term, consider getting a blackout blind or blackout curtain lining. Some specialist blackout blinds are sealed at the edges and can be used to make the room pitch black, but new blinds release chemicals for over a week after installation. Blackout material can be fixed to the window frame with adhesive Velcro (not suitable for sunny daytimes as the glass might heat up). During light evenings wear dark glasses and, if necessary, blackout your room and use low level artificial lighting. Try using a very dim light, or a torch at night, perhaps with a red coloured bulb. (IRISH)
• If sleep does not seem imminent, a personal stereo can help to pass the time during the night, although listening to anything too stimulating may keep you awake. Choose a light programme or talking book, or relaxing music. If you are kept awake by thoughts or worries, set aside a time earlier in the evening to think, write things down or make lists. Relaxation techniques can be helpful (see Resting). A Dictaphone may be the least stimulating way to jot down thoughts in the middle of the night. (IRISH)

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Speech Difficulties

• If you are able to speak, but only quietly, have something with which you can make a noise, in order to alert people when you want to speak. Some telephones can amplify outgoing (or incoming) sound. It may be worth learning a bit of sign language or inventing some signs of your own. A speech therapist may be able to provide more information or equipment e.g. a computer. Computers can provide an artificial voice if you are able to use one. Some people communicate by blowing or moving to indicate each letter, while another person says the alphabet. It is more efficient if the alphabet is ordered so that the most common letter comes first. Here is one such English language ordering: e t a o i n s r h l d c u m f p g w y b v k x j q z. Other people trace letters with their finger on a helper’s hand. Alternative methods of communication include boards (bought or home made) with pictures, words, symbols or letters. The person who is ill indicates either by pointing, moving their eyes or making some signal as the helper points. However, some people with M.E. are too ill even to do the thinking required for communication. (IRISH)

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Stairs

• Think ahead to minimise the number of trips up and down stairs. Make a collection of things to take up or down with you next time you go, or ask someone else to take them. Try to keep things that you will want during the day on one level of your home. Get duplicates of some items and keep one upstairs and one downstairs; e.g. a second lightweight vacuum cleaner, a telephone and small items such as scissors and paper. Keep a duvet and pillow downstairs and something to lie on such as a travel mattress, or even a second bed so that you can rest without having to go upstairs. It might be possible to re-arrange your house in a way that enables you to live downstairs. Consider having a downstairs toilet fitted or use a commode chair. Alternatively, you could have a small kitchen area upstairs. However, you may find that some rooms tend to be noisier than others, so consider factors such as proximity to household activity (which may be worse downstairs) and the transmission of outside noise. Go downstairs slowly one step at a time sitting down, or stand and make use of the handrail. A stairlift can be very helpful, although they are expensive. Social services might be able to provide one, depending on the local budget. They can be bought second-hand through local newspapers, stairlift companies, or disability organisations. If you are thinking of moving house, look at bungalows, ground floor flats and houses with a downstairs toilet. (IRISH)

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Talking Books

• Talking Newspapers and Magazines. The following organisations all require a doctor’s signature to show that the person has an illness or disability which causes difficulty in reading or holding books/magazines. If you can’t listen to very much, try tapes of short stories, children’s books or poetry. Use a tape head cleaner regularly to minimise background noise when playing cassettes. Some tape recorders have a ‘cue and review’ facility. This enables the listener to fast forward audibly and to hear when there is a change or silence. Some recordings take advantage of this possibility so that in, for example, a taped magazine you can find the beginning of the next article. Many local libraries stock talking books, which are available for anyone to borrow. Some also have a delivery service for people who are housebound. (IRISH)

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Teeth

• It takes less effort to brush teeth if you do it sitting down. Some people find an electric toothbrush useful. If travelling is likely to be bad for your health, ask for a home visit from a dentist. Try a mouthwash if you can’t always brush your teeth. (IRISH)
• Get an electric toothbrush! You may even be able to use it to brush your teeth lying down in bed or in the bath. A toothpaste like Biotene for dry mouths may also be helpful. (HUMMINGBIRD)

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Telephone

• Phone calls are often unpredicted and it is easy to find yourself in a severe relapse because of them. Arranging times for phone conversations in advance can make illness-management a bit easier. It may also help to let the other person know how long you expect to be able to talk for, and perhaps to use a timer (see Pacing for details of a timer). Practice being assertive – "I’m sorry, I’m not up to talking at the moment, can I arrange a time to ring you back?". With an answer phone you can receive messages without needing to answer or you can get a voice mailbox ("Call Answering") with Eircom (i.e. one doesn’t need an answerphone). Rests will be better quality if you don’t leap up to answer the phone in the middle; you might like to turn the ringing off at these times, or leave only one phone audible. Answer phones can also be used to screen calls so you can choose which ones to answer. Phone 1471(works in both Ireland and Great Britain) to find out the last number that dialled you. There is a Caller Display service in the UK that enables you to tell who is ringing by displaying their number on the screen of your phone and an automatic ‘Reminder Call’. In the ROI, either look at the products and services section at the start of the phone book or ring Customer Services (1901 with Eircom). To save rushing to the phone when you are up to answering, have extra phones in different rooms, or at least one upstairs and one down. Position them so that you are able to sit or lie down while you talk. Telephone extension leads and cordless phones can be used. Hands-free operation is possible with some telephones, either by means of a headset (which can be used lying down) or a built in speaker and microphone. It may be necessary to speak quite loudly into this kind of microphone. (IRISH)
• Some phones also have the ability to amplify outgoing (or incoming) sound. The telephone can be used for shopping, banking, and keeping in touch with friends (a three-way call is possible). If it is easier for you to listen to a conversation than to take part, you could listen while another person talks. With two phones or a hands free phone you can hear both sides of the conversation and participate a bit if you want to. Some carers carry a mobile phone so they can be contacted when they are out. Mobiles are also useful it you are able to go out alone, in case you need to call for a lift, taxi or breakdown service. (IRISH)
• If you are able to telephone but you can’t hold the phone for long, get a phone with intercom. (I have a Swatch telephone and if I want to call someone I lay the phone on my belly, the intercom stands further away because of the noise. With this phone you also can call internal if you have a second handset, so if you need help you can phone to someone downstairs. It is expensive, but really worth it. (INGEBORG)

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Television and Radio

• A special filter fixed to the front of the TV screen may make it a bit easier to watch, as may sunglasses. A remote control saves getting up, multi-purpose remote controls can be obtained and also ones with large buttons. If you don’t have a TV with a remote control, but you do have a video with one; if you switch your TV to the video channel, you can then change channels using the video remote. Record your favourite programmes to enjoy at your best time of day, watching or listening to it in short sessions if necessary. Using a video enables you to fast forward through the adverts. Some people with M.E. watch television with the sound off (some sports and nature programmes are suitable for silent viewing), although the high-pitched noise may still be too much. Try subtitles on Teletext page 888 (British & Irish channels); Aertel on RTE1 page 366 has a list of the programmes with subtitles for that day on RTE. Use the mute button if sudden loud patches are difficult. If you are well enough, you might like to hire a video and invite a friend. Friends in different places can hire the same video and talk about it on the telephone. It might be worth buying a film guide in order to select the best films to watch. Many people with M.E. find radio or cassettes easier than television. Some radios and televisions have a timer and can turn themselves off. Other family members may be willing to use headphones when they watch TV if the noise affects you. (IRISH)

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Temperature Control -

• Have extra clothing with you when out, especially a warm light garment such as a fleece. A hot or cold drink or a warm bath can help (see Washing and Drinking). Soak icy feet in a bowl of warm water. If you are well enough, try wearing several layers of thin clothes, as it is more flexible for varying temperature. Two thin pairs of trousers, or long johns and trousers, may be more comfortable than one bulky pair. Use extra covers on the bed if needed, this may enable you to have the window open sometimes for fresh air. Duvets are lighter than blankets. Cellular blankets are warm and lightweight. A blanket can be folded and used over part of your body for localised coldness. An electric oil-filled radiator is very useful for keeping one room warmer than the others. A lot of warmth is lost through the head, so try putting on a soft hat if you get cold in the middle of the night. One person with M.E. keeps a designated kettle next to her bed. She tips water straight from a hot water bottle back into the kettle to be reheated. Wrapping a hot water bottle in a blanket or towels will keep it warm for a while until you need it. An electric or folded paper fan may be of use. (IRISH)

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Tinnitus

• Recordings of relaxing sounds can help to mask tinnitus.(IRISH)

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Toilet

• Children at school may require special permission to allow them to eat, drink and use the toilet when they need to as needing the toilet frequently is a symptom of M.E. - Castor chairs are wheelchairs for use indoors which require no turning circle so they can get to some places that would be inaccessible to a larger chair. There are also special chairs with a hole in the seat, which can be wheeled over the toilet and also used for showering/washing. There are cushioned toilet seats for people who find hard seats painful. A raised toilet seat with handles or a grab rail might be of use if you have difficulty rising from a seated position. Social Services may be willing to provide any of this equipment. Although there is a risk of losing muscle bulk if you walk less, as long as you are aware of this, using a commode intelligently can increase flexibility. If walking is very limited, reducing the amount used on getting to the toilet can leave more walking ability free for other things such as going into other rooms, tackling stairs or going outside. You may be able to use toilet paper while sitting down. A commode or bottle can be useful if you need to go to the toilet frequently (especially if the bathroom is occupied!). If you can’t get to the toilet, use a commode or urine bottle (male and female versions available), or ladies’ slipper urinal (from BOOTS – these can be used lying down). People with difficulty sitting up to use the toilet/commode might benefit from having a back to front dining chair to lean forward onto, with a pillow for padding. (IRISH)
• There are urinals for women; you have them for sitting or standing use and you have them for lying down use only. (INGEBORG)

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Travelling

• In addition to Parking Concessions, various schemes are run in conjunction with local councils/social services departments in the UK, which allow disabled people to use public transport for free (e.g. the Freedom pass in London) or to take advantage of reduced fares in wheelchair accessible taxis. If you have a car, use the back seat as a place to rest with a pillow and sleeping bag (remember to lock the doors). (IRISH)
• An M.E. travel kit bag might contain some or all of the following: eye mask, ear defenders, ear plugs, wrap-around sunglasses, sun cap, plastic bags for travel sickness, a damp flannel, water to drink and snacks.(IRISH)
• Try to get as comfortable and well supported as possible before setting off. You may benefit from having padding under your legs and arms, a neck pillow and perhaps a hand-towel around your waist as a lumbar support. Reduce vibration by sitting on a pillow and putting another under your feet. Relaxation techniques such as breathing exercises can help to reduce the impact of the movement (see section on Resting). Smooth, straight roads are generally the easiest, although motorways are noisy and full of fumes. You may find air conditioning and good suspension helpful. Keeping your eyes closed when travelling reduces the stimulation. If you are able to rest in the vehicle, it can help to stop regularly, although some people find it easier to do the whole lot in one go. (IRISH)
• A carer may be able to check out the route beforehand to minimise problems on the day. Plan routes around toilet stops or if necessary take a portable urinal. Travel at off-peak times to avoid predictable traffic jams. Some road rescue services have priority service for disabled customers. Consider taking a mobile phone if you have one. Explain a bit about your needs to the person driving; for example asking them to drive as smoothly as possible and not to chat or have the radio on. As the driver will be occupied, it may be worth having a second helper to care for you while on the move. (IRISH)
• You may need to travel lying down or in a reclined position, although this leaves you without the protection of a safety belt. The most widely used method is to recline the front seat. You could try sitting in the back with your legs raised on a pillow on the fully reclined front seat. Another method is to lie on cushions on the back seat, or in a large car lay the back seats down flat and create a ‘bed’ with lots of padding, in the boot space. Probably the safest method of travelling in a horizontal position is by stretcher ambulance. With a doctor’s backing, these can be provided on the NHS (in the UK) for medical journeys. It is possible to hire one from St John’s Ambulance or the Red Cross (which operate both in the ROI and the UK) but this is very expensive. Funding for a particular journey can be sought from local charities such as Rotary and Lions Clubs. Ambulances and Dial-a-ride services often go round picking up several people, which extends the length of the journey. If this would make you more ill explain your difficulty and request a direct route. (IRISH)
• Bear in mind that you may feel worse than usual after a journey and so be less able to tackle stairs, walking and general activity. It’s an idea to try and organise for a room to be ready before you arrive so you can rest without delays. Packing and other preparation should be done well in advance (ideally by another person) to enable you to get plenty of rest before the journey. (IRISH)
• It may be worth suffering for a few days in order to get a change of scene, but perhaps only if you stay for a fortnight or so to give yourself time to recover and have some quality time. Staying somewhere close to home can make a journey more manageable (even the next street is a change if you can’t normally go there). Where travelling is likely to be bad for your health, do ask (and keep asking) for home visits from doctors, dentists and therapists wherever possible. If having both a journey and an event in one day is too much, you might be able to stagger it by staying somewhere for a night or two. For example, a hospital appointment may be more possible as an inpatient than as an outpatient. If the aim in an outing is to improve quality of life, and yet you suffer so much that it has the opposite effect, you may find you benefit more from staying at home and finding other things to enjoy.(IRISH)
• Train travel can be demanding due to the distance from ticket desk to platform in large stations. Iarnrod Eireann states that most large stations have a wheelchair available while Heuston Station, Dublin also has a buggy. On arrival, ask at Information Desk (allow extra time) and a staff member will assist. If travelling to a large station, ask a staff member to phone ahead to request wheelchair/buggy assistance on disembarking. (IRISH)

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Trolley

• A trolley or table on wheels can be useful to save carrying things backwards and forwards. Load it up in the morning with things you will want during the day e.g. kettle, thermos, bowl, flannel, notepad. (IRISH)

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University

• ‘Choose your subject carefully and be organised.’ ‘On a practical level, find out how many lectures a week you will have to attend plus extra work on top of that.’ ‘Plan out a work time table.’ ‘Tell your lecturers, personal tutor, Department and Year heads about the situation.’ ‘Remember, always ask these people for help if you need it.’ Think carefully about the practicalities of university life, and what assistance you are likely to need. Some Halls of Residence have special rooms for people with disabilities, which may be more suitable. The University may have a society for students with disabilities. Many students now choose a university close to home and don’t travel away. (IRISH)

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Vertigo

• If you have Meniere’s disease, which shares some of the symptoms of M.E. hyperacusis, a low salt and sugar diet is recommended. I’ve found that a low sugar/carbohydrate diet really helps with my M.E. sound and balance/vertigo problems as well. They have improved about 30%, which I am just so grateful for so it might be well worth a try is your hyperacusis/vertigo is severe. It works by reducing the amount of fluid. (HUMMINGBIRD)
• If you can’t close your eyes when you are resting because the room spins with vertigo, putting a wheat bag or something else heavy over your eyes can help. It not only blocks the light out, but the weight of it lets your body know where ‘up’ is so you can get some rest hopefully without having to hold onto the side of the bed to stop yourself falling off! (HUMMINGBIRD)

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Visitors

• It isn’t easy to ask a visitor to leave. One idea, which doesn’t interrupt the flow of the conversation, is to use coloured cards. When you are OK, have a green card on view. An orange card silently indicates to the visitor that you need to wind down the conversation, and a red card means you need a rest urgently. Rudyard Kipling had an ornamental fish, which he turned to point away from the room when he wanted the visitor to leave. If possible plan visitors for your best time of day and perhaps decide beforehand how long they should stay. It might help to use a countdown timer, which will beep after a set period. Frequent short visits are better than getting worn out once a fortnight. (IRISH)
• One person with M.E. uses a signalling system where a specific curtain is left open if she is happy for a visitor to pop in, and closed if not. If you find it difficult to concentrate when there is more than one noise, ask visitors to try and avoid speaking at the same time as someone else or over the top of an aeroplane or television. Explain that your brain has trouble filtering out excess stimuli, and if necessary ask friends to visit one at a time. Make plans to minimise the chances of the conversation grinding to an awkward halt. Look out for interesting topics, facts or jokes. Think about what you might talk about, and maybe let the visitor know in advance. You might prefer to do something together such as playing games or watching television. Use refreshments. If you are too ill to have a long conversation, a friend might be able to pop in to see you, go and talk to another family member while you rest, then pop in to you again before they go; or you might be up to having them sit quietly in the room reading a book, studying or playing patience. Some people might like to share a time of silent meditation, prayer or deep relaxation with you. If you are very ill, your family may be able to keep up some contact with your friends on your behalf. Visitors who would stay the night if you were well enough might be able to stay at a local Bed & Breakfast instead. (IRISH)

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Walking

• A lightweight stick, walking frame or crutches might help. Some ramblers use ski sticks or walking poles. Wheelchairs save a lot of physical effort even if you are able to walk, and enable people with M.E. to go further. Walking is easier than standing for many people with M.E.; if this is the case for you, try walking on the spot or moving your legs around instead of standing still. Spreading salty sand on wet or icy steps will make them less slippery. (IRISH)

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Washing

• If hot baths make you ill, try one at body temperature. Grab rails can be fitted next to the bath, shower or toilet, or in other places where they might be useful. Consider getting a non-slip shower or bath mat. (IRISH)
• A seat for the bath or shower can be useful in minimising symptomatic payback, even if you are able to stand to wash. There are various types such as a simple four-legged stool, wall-mounted folding seats, or a seat that goes across the bath (ask an Occupational Therapist). An extra wall- fitting for the showerhead could be positioned lower down for a seated position. Have a stool by the basin as well. If there is room, a castor chair can be wheeled up to the basin to save lifting (Wheelchairs). Sit down when drying yourself, brushing teeth, or having a wash. (IRISH)
• A shower robe may enable you to get warm and have a rest before getting dressed and saves the effort of drying, or wrap yourself in a big bath towel or two. Towels or clothes can be warmed on a radiator or in a tumble drier. If you are too ill for a bath or shower, try having a wash in bed with or without assistance. It may be worth washing only one part of your body per session. Plastic bidets can be obtained which fit onto the toilet. (IRISH)
• Balls of soft mesh are available from chemists (known as ‘puffs’ or ‘body polishing sponges’). These lather up soap more easily, thus reducing the effort needed to wash. A particularly good type is the ‘Ulay puff’. A flannel mitt (or two face cloths sewn together) will help stop you dropping a face cloth. (IRISH)
• If you can’t wash every day, shaving armpits [and/or pubic hair] every week or two reduces body odour. You can wash hands in bed with no-water hand wash or vodka. Baby wipes can be used for keeping hands and body clean. Take care with new products if you have chemical sensitivities. If you find a bath relaxing, the evening can be a good time to have one, to help you unwind before settling to sleep. (IRISH)
• If you can’t stand for long, use a chair under the shower. (INGEBORG)

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Wheelchairs

• Using a wheelchair is much less physically taxing than walking. Take it slowly and get someone to push you. If you are quite severely ill, try it at home without moving around first. To minimise vibration, have large wheels with pneumatic tyres and stick to smooth surfaces. Wheelchairs are a form of transport, which can enable people with M.E. to go much further than they could walk. This needn’t stop you using your leg muscles if you can walk – think about a child’s use of a wheelchair. If you are embarrassed, go at first to a place where you are unlikely to see anyone you know. People who can’t sit up for long enough to use a standard chair may be able to use one that reclines fully or partially (fully reclining wheelchairs can be used lying down). Experiment with different cushions to try to minimise pain/discomfort. A headrest which supports the sides of the head may be useful. It might be suitable to combine a short trip in an upright chair with time lying down in a car or on a portable sun bed. Some people are not well enough to use a wheelchair at all. A castor chair is a wheelchair for use indoors which requires no turning circle. Lightweight chairs are easier to lift in and out of a vehicle and to self-propel. Electric wheelchairs and scooters can increase independence for some people with M.E. (IRISH)

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Writing

• It takes more muscle power to write with some pens than others. A ‘2B’ pencil requires less pressure than an ‘HB’ pencil, and a fibre tip or gel pen less pressure than most biros. Experiment with different writing implements. A pencil always works and a propelling pencil doesn’t need to be sharpened. Some pens have an area of rubber or serrated plastic to make them easier to grip, or you may find a special chunky pen easier. There are pen grips available from disability equipment catalogues, which fit onto ordinary biros or pencils, or make your own by wrapping a rubber band round the pen. The ink flow tends to be better with more expensive ballpoints, which makes them easier to write with. Lean on a hard surface such as a clipboard. (IRISH)
• Address stickers and headed notepaper save writing your address and can be obtained from many sources including some charities. Labels can also be used for messages such as ‘Happy Christmas, with love from Sophie.’ Some stationers sell cards printed with a message such as ‘Dear …, Thank you very much for the Christmas present. Love from …’ Pre-inked stamps can be made with an address or even a signature; ask a good stationers. (IRISH)
• Standard letters, which can be sent to more than one person, can save effort. These can be done on a computer or handwritten and photocopied. Computers can also be used to print out labels for addressing envelopes. Use highlighters and different coloured pens and paper to make filing systems and lists more user friendly. Post-it notes are also useful. Writing or dictating post cards or note cards rather than letters is enough to keep in touch. It doesn’t have to be finished all in one go, but can be written or dictated a few lines each day. Some people exchange talking letters, recorded on cassette. (IRISH)
• It may be possible to dictate into a tape recorder or dictaphone and then get someone to write it out later. A personal stereo/dictaphone, which uses full size cassettes and doesn’t need earphones, is available from ARGOS. Some tape recorders record when you speak and stop when it is quiet so there is no need to keep pressing buttons. It is also possible to dictate into a computer with the correct features. Other programs can minimise the number of letters typed by guessing the word or phrase as you type it (e.g. newer versions of Word for Windows). (IRISH)
• Some friends might be prepared to send you postcards or letters without receiving a reply. Creative writing such as poetry can provide a means of expression and enjoyment, but it can be difficult to switch off and rest when your brain is in the middle of composing a poem. Write lists and notes as an aid to memory. Keeping a diary or journal may help express your feelings. (IRISH)
• Some words are often shortened (and, street, road) but you can choose to shorten other words as well if you are writing notes 2 yslf, as long as you can remember what they mean! Some people use 4 instead of for, u instead of you. Shorthand is designed to be the most efficient way of writing. It takes time to learn in full but you can always use selected bits. Books are available to teach yourself ‘Pitman’s Script’. Using a letter opener can save muscle power and fitting a cage to the letterbox means you don’t have to pick up mail from the floor. (IRISH)
• A pencil always writes and costs less strength. If you really want or need to write with a pen choose a gelpen, these are more comfortable in your hand and write lighter. I have bought the so-called dr.grip-pen at Medifix (only Dutch) and I am really very happy with it. The pen is perfectly balanced, lightweight and soft in your hand and you just need to touch the paper and the pen already writes... you absolutely don't need to put any pressure. There are also special scissors which don't hurt you to use and which cost no/less strength', spring assisted scissors. (INGEBORG)

 

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A second list of tips which deals with how to cope with M.E. emotionally is also available: Hints for Coping with ME Emotionally

If you’d like to share some of your own tips please leave them at my guestbook or submit them by email but don’t forget to leave your email address too so I can get back to you - as well as your name so I can give you the credit for your ideas! (or you could be anonymous if you wanted to).

I hope you have found a few things here that will help you in some way with living with M.E. Best wishes to you all in your battle with M.E.

 

HUMMINGBIRD: Tips written by Jodi Bassett of A Hummingbirds Guide to ME.

INGEBORG: Tips taken from Ingeborg's M.E. Website 'Borg of Space'

IRISH: The Irish M.E. Tips Collection.

This chart, in Word format, has taken me ages to put together and so I thought I'd offer a sort of do-it-yourself version here for other MEites to download to maybe make all that time worth it a bit more!

It is a medication chart, but also lets you see exactly how much each medication is costing you on a daily, weekly and monthly basis, which can be really useful in working out how viable each treatment is with regards to cost. So it's a budget chart as well.

But I've also included some instructions on how to modify it, so you can monitor just those bits and pices YOU are interested in, and ignore the rest.

Click here to download the chart in Word format (that you can fill in either digitally, or by printing it out and filling it in by hand).