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Carers and family

The carer or family member who has got a real grasp of what is going on with someone with ME is one of the most valuable ingredients for recovery. Seeing things as the person with ME sees them is extraordinarily helpful. Also, just as PWME may need an extra pair of hands, an extra clear-thinking unfatigued mind when the wheels are falling off is a useful resource to have. With MEMap you the carer, friend or family member really are the glue that can stick everything together. Until you have had ME, you probably have no idea what a desperate, desperate uphill battle understanding and configuring an App could seem to be. Your energy to help set up the App, and your sensitive engagement with planning recovery, are often likely to be the key to progress.

For those experiencing ME, asking someone close to you, or another person with ME, to actively share the process of planning your recovery is highly recommended. Even the wisest thoughts which whirl around inside our own heads often double in wisdom once they are verbally expressed to someone else. Conversations with family and carers indicate that they often feel quite helpless faced with ME - a request for help with MEMap or planning recovery more generally will often be warmly welcomed!

That tough carer role

For sure, being an onlooking family member, friend or carer is a tough role when someone close to you has ME. In fact you need to be ambidextrous! On one hand, it's legend among PWME that 'only people who've had ME get what it is like'. So a genuine attempt to scrub away all preconceptions and listen, listen hard - and probably not do that guy thing of 'offering solutions' - seems a good start. On the other hand, ME fatigue is the absolute enemy of clear thinking and sticking to (or even remembering) recovery plans. Also, maintaining motivation to follow strategies which DO work is hard when you don't have much feel in your bones for what wellbeing could be like. Therefore very skilled, very gentle interventions to check the thinking of the person with ME, offer reminders about good plans decided upon, and encourage 'belief in better' can be invaluable assistance to your friend or family member.

MEMap is a shareable format whereby PWME and their carers can communicate via maps. These maps provide a place to develop and grow understanding of where the person with ME wants to be, what they feel they are facing and what does (or might) work for them. Simply sharing the journey with others is surely a good in itself. And where there is a collaborative effort to establish 'complete maps' of both the illness which is being experienced, AND of the look and feel of the health sought - that will usually be invaluable work. How precisely should individual families or friends achieve this? No doubt with with care, love, humour, however the shoe fits! It is inevitably true that a good, perceptive question usually works wonders. For example you might describe your sense of a particular issue you imagine the person with ME is facing, and your sense of what may take it forward, sent to them as a Frame/Reframe with the tag 'Accurate descriptions???'

See 'Using MEMap as a communication and support tool' on the MEMap explained page.