Communicating with people
Communicating with the outside world can be very difficult when you are bedbound, even getting the attention of someone in the same house can seem impossible. There are several ways though to call people even if you can’t speak.
- Indoor Bell – these can be purchased from Argos & Homebase and work in the same way as a normal doorbell. The bell can be moved around to different areas in the house and you are left with a control button, which you can push to make the bell ring. You can work out different ring patterns for different needs:
- e.g. One ring for company
- Two rings for the toilet
- Three rings for an emergency
- An intercom – you can use an intercom or baby alarm to talk to a person in a different area of the house. If you can’t speak then you can use a rattle, whistle or anything that makes a noise. E.g. A teddy bear that squeaks
- A mobile phone by the bed – if you have a mobile phone it is an idea to keep it switched on but on “silent”. You can then have numbers programmed in for speed dial. E.g. House phone number . Parent/carers mobile phone or work numbers if you are left on your own
- If you are unable to speak, then you can get a carer to make up a board or piece of card with important words, photos or pictures on it – like food, drink, toilet, yes/no, which you can then point to. You can also have the alphabet if you need to communicate something that is not on the board.
- The board can be difficult if you are in a darkened room, so you can use fingers as signals. Your carer can feel for your hand and the number of fingers.
- e.g. One for drink
- Two for food
- Three for medication
- Four for the toilet
- Thumb for Yes
- Little Finger for No
If the severely affected person is paralysed, then the carer will be the best person to learn what they want. This can be extremely difficult and frustrating for both people involved; but over time you will develop your own system. e.g. flicking eyes for attention, deep breathing or sighing as a specific yes or no.
Communicating with the Outside World
Contact with the outside world can be a mixed blessing, at times it’s nice to know that there are other people out there, thinking of you; but at other times it can be difficult hearing what is going on, while you are stuck inside.
It’s good to have friends with ME, who, if not entirely understanding, have an idea of what it’s like to be ill. Some ME charities run pen pal schemes which are a good way of meeting people in a similar situation.
Often a pretty card or postcard is more valuable than a long letter. It’s the receiving of something that matters - allowing you to look forward to the arrival of the postman. This is also a good way to stay in contact with people without hearing too much of what is going on with their life. Suggest this to family and friends.
To let other people know how you are doing or about a special event like your birthday you can dictate a letter to a carer or record it on a voice recorder, possibly only doing a couple of lines a day. They can then write/type it out and then photocopy/print off more than one copy.
This is a good way to stay in contact with lots of people with the minimum of effort for you and your carer. Letters can be decorated with stickers, ink stamps or little drawings. In the same way you can also make little cards to send to people. Fold a small piece of oblong card in two and decorate. There are some beautiful stickers available from garden centres, craft shops and mail order catalogues. This is great, even if you have to get a carer to lift off a sticker for you to put in place on the card. It takes a little effort; but is very satisfying.
During your time as severely affected you may or may not want to have visitors. If you do decide to see people then get your carer to explain the situation to them. Devise a method to show them when you need to rest.
- Use a timer and get your carer to set it for a slightly shorter time period than you think you can cope with. This means you don’t over do it. Either keep the timer in the room or get your carer to hold onto it and come and collect your visitors when the timer goes off.
- Have a card warning system like in football. Place a yellow card on the bed as you start to feel tired and then a red card to show you need them to leave immediately.
- Alternatively just ask them to leave when you start to feel tired. This can be very difficult to do at first but if you say something like “I’m sorry I need a rest now”. This is simple and to the point, without being rude.
Think about topics of conversation beforehand, so you aren’t stuck trying to think of things to say.
Text messages are a great form of communication; but they require a certain amount of energy and concentration, unless you’ve got a willing carer or relation to whom you can dictate a message. It’s an idea to get them to type somewhere else as the noise can get too much. There are phones available with keyboards on which you can type easily just like on a computer e.g. the Nokia 6800. These take a lot less energy.
Talking on the phone
Some people enjoy talking on the phone or even just listening as a friend talks to them. Get someone to explain to the person that you might not be able to concentrate for the whole of the call or might have to end it suddenly. Use a special phrase to ask them to stop talking. There are special phones available that are like headsets, so that you don’t have to hold the phone up to your ear. (See Argos Catalogue)
Social Media, Email & The Internet
This is another form of communication; but takes a lot of concentration and energy - whether you're using a smart phone, notebook/iPad or laptop. If you have a computer literate carer they can do some things for you; but it can still take a lot of energy just having someone in the same room using a computer, so it’s a good idea for them to do it in a different room and print off things to bring in and show you. If you can use a notebook or laptop it can be placed on a pillow, lap tray or on a table beside you. You can turn down the brightness of the screen. It can be quite addictive using social media and may be worth setting a timer, so that you don’t over do it.
Tape Recorders or Voice Recorders
Audio recorders are a great way of recording your thoughts and feelings and allow you to dictate letters when you are on your own. You can use an old tape recorder, a smart phone or iPad. Recording your own voice can be a very strange experience. The best advice is to relax and not to worry how you sound. You can dictate letters to be written out by a carer or you can email the voice note directly to the person to listen to. Perhaps they could record a message to send back to you.
Just because you are bed/house bound doesn’t mean that friendships have to end. It can be hard hearing what other people are up to and if necessary you can get a carer to ask people not to talk or write about certain things. At the end of the day it is important to know you are not alone.
‘Friends are like stars You can’t always see them But you know they are always there’