Live Well: Back-up Plans

Life is unpredictable.

For all of us.  

Chronic illness, injury or disability add complications to coping in a crisis. 

Chronic illnesses themselves can be unpredictable, even in the best-managed scenarios. 
It is important to be prepared.

My condition, mixed connective tissue disease is a remitting and relapsing one.  
With fluctuating symptoms, it can be difficult to assess whether to ride out a relapse or to recognise a serious progression and seek extra help. 

There will be times when a flare-up of symptoms will restrict my activities severely. 
As a parent, waking up on a schoolday being unable to get out of bed can be either an anxiety-ridden major crisis or a calm and collected change in routine. From experience, I can tell you that the latter is much less stressful. 
It all comes down to planning.

Have back-up plans for peace of mind

• Consult your GP about what constitutes an exacerbation of the condition – which symptoms and signs will necessitate a change in medication or hospitalisation
• Discuss an emergency health plan with your medical professionals
• Make arrangements for extra help in the event of an exacerbation or emergency. Know in advance who to call when help is needed, and whether there is an 'after hours' service.
• Many community services have home delivery services; e.g. chemist, library, groceries, even blood tests can be done in the home by community nurses
• Be aware of available respite services in your area
• Find out: is it possible to have healthcare in the home instead of in the hospital?
• Know the details of health insurance policies, ambulance cover etc. and make sure they are up to date and meet needs appropriately
• Reassure children by training them about what to do in an emergency. (For example, we have used role playing to teach them what to expect and what to say when ringing the emergency services. We also have the words written down in a handy place so the children know exactly what to say in the first instance.) We have even had fun finding ways to help the children remember the name of my condition (see Resources for MCTD).
• Plan for emergency child care in advance and tell your children what will happen and who will look after them in the event of an emergency.
• If you have good neighbours, or friends living very close by, they are worth their weight in gold if they are able to wait with the children until the emergency child carer arrives. This is important if one needs ambulance transport. The 'ambos' will not transport children or other passengers.

Knowing that there are people available on standby and having the right supports in place is important for peace of mind and will make it easier for everyone to cope in times of crisis.