Here are some practical tips for managing at home, school, play and away.
Shift focus away from what can’t be done or is difficult to do. Encourage a ‘can do’ attitude.
Get ready for change
JIA can be marked by painful flare-ups. If this happens, current treatments might need to be reviewed, medications changed, and splints or extra physiotherapy recommended.
Everyday tasks can be made easier with a little planning.
- If there’s morning stiffness, lay clothes out the night before.
- Velcro fastenings, large buttons and looser styles can make getting dressed easier.
- Specially adapted kitchen and eating utensils are available as are modified pens, pencils and paint brushes.
- Lever taps can make turning water on and off easier and bathrooms can be readily modified. Hand and grab rails can also be installed.
- A range of adjustable furniture is also available.
Start the day a little later
JIA can interfere with early morning activities.
- Starting the day with a warm shower can ease stiffness as can placing a hot water bottle in bed 30 minutes before it’s time to get up.
- Tasks attempted first thing might be easier later in the morning.
- Catching up with friends in the afternoon can be preferable to spending a whole day at home alone.
Move it or lose it
Strength and mobility is built and maintained through movement.
- Swimming and aquarobics are excellent as is just paddling in warm water, tai chi, introductory yoga or even air guitar on slower days.
- Bending and stretching every joint every day is recommended as is avoiding being in one posture, especially sitting, for too long.
- A health professional can advise if it’s safe to exercise during severe flare-ups.
Mood and movement
Mood can be as much as an indicator of being in pain as limited or slow movement.
- Being unusually quiet and withdrawn or appearing tense or even being a bit difficult can signal pain.
- Keeping a joint such as a knee or finger bent can also show there’s discomfort.
Diet is important
Reducing exercise and everyday physical activities can lead to weight gain.
- Some medications also stimulate appetite.
- Extra weight puts extra pressure on bones and joints.
- Foods low in fat and sugar are advised, and fast foods should be minimised.
Appetite can also be lost. If this happens, small frequent meals can help maintain weight.
Let the school principal, teachers, sports coaches, and group leaders know about JIA. Give them a copy of our booklet Juvenile Arthritis – a teachers guide
Ask that JIA be considered in everyday situations.
- For example, arrange to be able to stretch or walk around during exams and ask for extra time to complete assignments.
- Know it’s OK to wear splints and use things like writing boards, adjustable chairs, and modified computers at school.
Monitor the meds
Monitor all medications and inform health professionals of any over-the-counter preparations from chemist shops, supermarkets and health food stores that are also being taken for JIA or any other condition.
JIA camps provide a valuable opportunity for children and young people with juvenile arthritis to have fun, meet others and share experiences in a supportive environment. Dedicated team leaders and staff, including health professionals, attend camp and guide participants through a range of exciting activities and fun education.
For details of the camps for kids with JIA run by Arthritis NSW, visit here.
Pull-along school and travel bags on wheels are widely available and make carrying things much easier. Wheelchairs can be hired on a one-off basis to ensure very special events can be attended.
Avoid the rush
If balance and coordination are a problem, try avoiding peak hour pedestrian crushes or moving through large crowds.
Take it with you
Travel with medicines, a copy of prescriptions as well as medical notes and emergency contact numbers.
Check with travel companies for special arrangements for carers as well as wheelchairs and other aids.
Down the aisle
Book seats or sit near the aisle when attending events. Find out in advance the location of things like toilets, food outlets, and alternative entrances and exits.
Have a go
JIA can be predictably unpredictable so sometimes it’s best to get in and have a go rather than wait on the sidelines.
Playing goal keeper rather than centre or being on court for just the first and third quarters can encourage participation as can taking on new roles such as umpire, score keeper, costume and set designer, ‘meeter-and-greeter’, coach, special helper or ticket seller.
Words of the well meaning
There are perhaps as many myths about arthritis as there are people with it!
And with one in six Australians having some form of arthritis that means there is a lot of misunderstanding about its causes and supposed cures.
Despite the good intentions of many, there is no scientific proof, for example, that not eating tomatoes, wearing copper bracelets or using magnetic underlays will prevent or improve any form of arthritis, including juvenile arthritis.
Talk about JIA
Most importantly, talk about JIA with your child. Talk about fears, concerns and frustration, as well as discoveries, adventures and triumphs.