Downgrading from a busy and active lifestyle to one that may be bedridden or housebound for a considerable time usually requires a great deal of adjustment. For this group of sufferers, whose physical and mental limitations and un-wellness are so extreme, finding meaning and purpose during the waking hours to break the monotony of enforced inactivity is an enormous challenge.
The following suggestions are to be used as a guide only, and to encourage readers to come up with more creative or individual ideas to add to the list. The addition of further innovative ideas will contribute to a wider range of choices for the benefit of sufferers.
Staying awake for long enough during the day to engage in meaningful activities may be difficult for some sufferers who have sleep disorders. Seek practitioner advice if you need help to sleep at night.
Try to establish a regular pattern for sleeping and waking as close to normal as possible.
Try to differentiate what you do during the day by establishing a daytime routine and a separate night routine.
Use a combination of an adjustable bed, back rests, pillows and cushions for support, to comfortably prop yourself up to a semi reclining or sitting position during the day.
Engage in any activity within a timeframe which you can comfortably manage, such as up to thirty minutes.
Take frequent breaks during an activity as well as between activities.
Have a drink or something to eat during breaks. Try to include some protein foods in your snacks.
Try a range of activities to provide variety during the day.
Listening to radio programs, cassette tapes, and compact disks of your choice.
Watching television programs and videos of your choice.
Reading novels, magazines and newspapers.
Contact the local library in your area for a range of outreach services, such as a home visiting service which brings you library materials of your choice.
Vision Australia and Royal Victorian Institute for the Blind also have talking books on tapes for those preferring listening to reading. Contact their library services.
If you are able to continue with an existing craft or hobby, then this is ideal.
For the beginner or someone searching for new ideas or activities, there are many handicrafts to choose from; such as paper craft, origami, collage, macramé, felt and fabric craft, stitchery, and so on.
The best way to gain an overview of what the different crafts are and to select the ones that suit you, is to borrow some books on handicrafts from the library. You can enlist the help of the library home visiting service, or ask someone to help you.
- Knitting has become popular for male and female, young and old. Knit woollen squares to be made into rugs for charities or gifts. Knitters can have fun using different coloured wools and patterns for the squares. Beginners can knit plain stitching to form squares.
- Using 8 ply wool and size 8 or 9 knitting needles:
The dimensions for the larger squares are:
Cast on 40 stitches, knit 36 rows plain, then cast off.
The dimensions for the smaller squares are:
Cast on 20 stitches, knit 18 rows plain, then cast off.
The finished squares are first colour matched and the patterns arranged into a pleasing effect prior to being sewn or crocheted together to form a rug. The effort required initially in learning to knit is well worth it, because it is a clean, lightweight activity with a pleasing and satisfying result.
- Take care when packing up craft materials, ensuring all needles, pins, and any other sharp items are accounted for, and nothing is left behind on chairs or bed to cause injury.
When engaged in any craft activity, try to take frequent breaks to minimise muscle strain and fatigue. For example, gently stretching limbs, breathe in through the nose and exhale through the mouth a few times; then move eyes to focus on different objects in the room, and out the window to a distant view; then go back to the activity.
If you have bits and pieces of collectibles, such as postcards, paper cuttings, etc., stored away in the cupboard, now is a good time to arrange them into a scrapbooking kit or album.
Organising photos into photo albums with dates and descriptions beside each photo, to help preserve precious memories. If you are able to, taking up photography as a hobby may be an option.
Collect used stamps for charities to help raise money. Ask family, friends, or carers, to save their old envelopes. When there is a sufficiently large enough bundle collected, use scissors to cut off stamps neatly, leaving a 5mm plus gap all around the stamp. Contact local charities or churches for collection as well as for supplies of more old envelopes for trimming.
If you are looking for a challenge and able to concentrate on solving mind games, there are many choices ranging from easy puzzles to complicated crosswords. The newspapers have a section each day on puzzles and crosswords, including solutions. If you are able to find someone willing to donate their newspapers to you, or have newspapers delivered daily at home, then you will always have a ready supply of mind games.
Play card games such as Solitaire or Patience on your own, or play with a friend; or play card games such as Solitaire or Free Cell on a computer.
Send a card, photo, poem, verse, joke or e-card to cheer up a friend.
If you have the use of a computer with Internet access, this is a way to communicate and connect to the outside world, and opens up a whole new dimension for the bedridden and homebound. The services offered by this technology include sending and receiving of emails, sharing of information on chat groups, accessing information on news, events, searching the Web for information on any topic, paying bills, banking services, online shopping, downloading of music, and so on. The ability to utilise these services will contribute to more independence, less dependence, and increase self esteem, resulting in an improved quality of life.
- Adaptive programs and devices are available for computers to help people with vision impairment or special needs, including:
- screen enlargers that enhance the picture from your monitor if your vision is limited
- voice activated programs such as Dragon Naturally Speaking, which enables you to speak your thoughts directly on to the screen, reducing the need to type and so saving energy
- language recognition programs such as Dragon Dictate for the vision impaired
- other specialised aids and equipment may be available to enhance the independence of people with disabilities. If you have needs which cannot be met commercially, contact:
Phone: (03) 9853 8655
An assessment by an Occupational Therapist can advise on equipment modification to assist sufferers of ME/CFS and others with special physical requirements to use the computer with more ease, comfort and safety. Refer Resources Section for contact details.
Alternatively, if you wish to obtain a computer related accessory, or make a particular modification, then computer /electronic shops such as Dick Smith or Tandy Electronics may be able to advise and assist.
Wesley Do Care is a social support service that addresses social isolation and assists individuals to become involved with and remain in their community. They offer a number of services both for the physically active and those who are bedridden and homebound, and these include the following:
- Telelink. This program enables groups of up to ten people to talk together on the telephone on a weekly basis in the comfort of their own homes. Friendship and special interest groups operate on different days of the week, enabling you to connect and talk with others on the phone on a daily basis if you wish.
- Do Care can provide a volunteer visitor to your home for social support and friendship. The one to one matched volunteer is provided with training and ongoing support. Contact the Wesley Do Care co-ordinators for further information on Telelinks, volunteer visitors, or other services.
Three way chat link. This telephone link enables private individuals to connect with two other friends and talk three ways at the same time. A telephone with a Three Way Chat or Recall button will enable this link up to occur. There will be a small extra charge added on to the cost of the call. Check the availability and cost of this service with your telephone service provider.
Contact your local churches or service organisations for volunteers to visit and just sit with you, if at times you lack the energy to interact or maintain a conversation. Ask the volunteers to bring a book or hobby with them if appropriate.
Wesley Homeshare is a shared housing arrangement based on the barter system. The Householder provides a bedroom and shares facilities. The Home sharer provides companionship and some practical assistance in daily living by mutual agreement. The program co-ordinators maintain contact and provide ongoing support to the match. At the time of writing, the program is available only in certain suburbs and only under certain criteria. More information can be obtained by contacting the Wesley Homeshare co-ordinators.
Wesley Homeshare Co-ordinator
Phone: (03) 9569 2177
Wesley Do Care Telelink Co-ordinator
Phone: (03) 9762 5211
Royal Victorian Institute for the Blind
FreeCall: 1800 335 588
Vision Australia Foundation
Phone: (03) 9864 9222
Neighbourhood Houses and Community Houses/Centres provide a range of leisure, craft, educational, and personal development opportunities for residents.
Local Community Health Services provide information on a range of leisure activities in your area.
Phone: (03) 9853 8655
Provide affordable computers to Healthcare, Aged, or Disability Pension cardholders
Phone: (03) 9418 7400