How MEMap will make these 5 steps work for you
Don't worry... all this wil become clear once you play with and use MEMap
Config allows you to opt in to areas reported by ME recoverers to be fruitful for indentifying the nature of the illness they face, the areas where useful strategies could be found and the kinds of wellness to aim for.
A map of the wellness you want creates direction for you to head towards and illuminates the illness that stands in your way or, put slightly differently, illuminates the barriers to your health and happiness
A clearly defined map of your experience of illness or the barriers to your health and happiness clarifies the strategies or solutions that are needed for recovery.
As strategies for recovery are developed, feeding quick reminders about those which prove successful into your map of wellness builds an increasingly complete reference point for all aspects of recovery.
Change tools create a vivid enticing picture of the wellness you want and help navigate the journey from illness towards wellness.
Using MEMap with configuration
MEMap combines 2 sets of wisdom: the opportunity to tap into thinking designed to characterise reported wisdom of ME recoverers and their practitioners, and your own intuitive wisdom about the wellness YOU seek and the barriers which exist to achieving that wellness.
Configuration is a way to cast your mind over the kinds of thinking that seems to have worked for some, and take from it what you wish. During configuration, and throughout the website and App, 'ME Buddy' examples exist to give a fairly rudimentary illustration of how you may use any category or subject area.
The Guide tab, and Audio guides 'Building a Wellness Map' and 'Identifying changes you want' in the MEMap App explain the process of creating a reference point for how the health you want looks and feels - and using that reference point to intuitively and logically break your illness into manageable and meaningful chunks.
It is recommended that you complete the Config Journey and take some time to become familiar with the MEMap App it generates. Then re-read the Guide tab and listen to 'Building a Wellness Map' and 'Identifying changes you want' in the MEMap App. This should sow seeds for useful adjustments to the Bubbles and Frames that configuration generated for you.
The importance of a picture of wellness
Perhaps for any human, the person we can be is limited by what we can feel in our bones. Many PWME we have spoken to describe having lost meaningful connection to what it is like to feel healthy or good. As one said, "for years I made purely intellectual or abstract decisions about my activities. Nothing in my body felt good so there was no way of having any feeling for what would help or what would over-exhaust me". And another, "I was lost in a cycle of faking who I was and everything I did because inside I felt permanently terrible and drained of energy". Some have talked movingly about finding shoots of wellbeing which reconnected them to what health would feel like. These shoots usually seem to shine wonderful light on where even more health can be found and on those things that might have been hindering recovery. MEMap, then, hopes to help users reconnect to a clear picture of the health (and life) they want. And where users do have moments of wellbeing, or have found some seeds or shoots of wellness, the aim is to provide a reminder and a feel for what those seeds and shoots are on the home screen of the MEMap App (aka the Wellness Map), so they can readily be nurtured further.
It is widely recognised that having clear focal points which 'draw you' towards them is a key part of any kind of change that anyone wishes to make. Configuring MEMap is designed to provide a number of these kinds of focal points. A definite time and place when your life and health was absolutely fine is the principal one. An imagined scene from a great day in the great future you wish for, and the look, sound and feel of people who, for you, exhibit great health, are other focal points.
As well as direct reference to good health, the Wellness Map is designed to include any peak wisdoms, core values, life strategies or inspiring reference points that put your life into a perspective that feels very right. Most people have occasional perceptions which wash away stress or negativity - or give the day a boost. Instead of the constant process of forgetting and re-remembering the knowledge your inner coach has about zoning out of stress, asserting yourself, feeling confident, centred and easy etc, MEMap helps bottle it for more continuous use.
On a purely practical level hopefully all this seems helpful. But also at a neuroscientific and psychoneuroimmunological level, making regular connections to these kinds of self-knowledge seems to offer many benefits. The MEMap App Audio Guide, 'Building a Wellness Map' talks about this in more detail. It also gives detailed guidance on building your Wellness Map - though there is no right or wrong way to do that. Ultimately it is a very personal process of capturing the memories, associations, aspirations, values, imagery, strategies and wisdom, which really speaks to you and says... 'healthy, energised, content, optimistic, relaxed, free to live your life the way you want it...'
Variations on the complete MEMap process
Is configuration necessary?
No. If you read the 'Guide' tab, listen to the Audio Guides 'Building a Wellness Map' and 'Identifying changes you want' in the MEMap App, and feel comfortable with a) building a picture of the wellness you seek from scratch, and b) using Frames/Reframes to break up your experience of illness (and the strategies that work or the solutions you seek) into manageable chunks - then configuration may be work that you can do without.
Reading through the MEMap Config Journey may still prove thought provoking and worthwhile.
Is it essential to complete steps 1 to 5 in order?
No. It is not a matter of completing each step before moving on. Once you have made some progress you can move on and circle back to earlier steps when new perceptions arise. There is a sensible logic for initially engaging with the steps in numerical order, but if, for example, starting by identifying the issues you want to move forward (ie 3 and 4) feels the best option, do that. If you are going to use the Visualisation tool AND the Audio Guide 'Identifying changes you want',
it is recommended to have a go with the visualisation before fully engaging with the audio. If you are going to configure MEMap, it is best to do that first. Once you start using the App it takes some work to stop the configuration process writing over any items you have created.
Simply picking the bits you like
The only usage of MEMap that will work is the one you feel is a meaningful use of your time and energy. We have found that using is often believing with this tool - so do try to give it some time. But where things are not for you - eg the Visualisation or Stop change tools will often feel a bit much for some - give them a miss. Steps 3 and 4 naturally work together (if you want to use them but not step 2, the audio in step 3 may then be superfluous). If step 2 does not interest you, taking the Config Journey on this website, but opting out of the questions on the 'Config completion' page, is recommended.
For an injection of positivity, steps 2 and 5 may work comfortably together. In this case, taking stage 2 of the Config Journey, the 'Config completion' option, but not the rest of the Config Journey, is recommended. If you want a straightforward planning tool for ME with minimum set-up or mind-body stuff, steps 2, 3 and 4 without 1 and 5 might work for you.
You may just want to go with 'Easy MEMap' or using the App as a communication tool (in both cases see below).
At its heart MEMap is a thinking tool. Thinking is a slow process: the invaluable perception we humans have while watching the sunset or sitting on a hillside is often lost and refound many times before it sets more permanently in our conscious. At its simplest MEMap is a designed to capture these wisdoms as they arise - and develop them, not forget them, over time. This - 'Easy MEMap' - can be done by ignoring configuration and not bothering to attempt to build full maps of what your wellness looks like and how your experience of illness feels. Instead simply create Bubbles and Frames to add useful thoughts or perceptions as and when they come along. MEMap only really comprises 3 types of wisdom:-
Issues, problems or chunk sized parts of your illness - the things you feel need to shift to make way for wellness. These are 'Frames'.
Strategies or solutions that might work for the things you need to shift. Or aspirations for where you want these issues or 'chunks' to head. These are Reframes.
The look and feel of the easy, happy wellness you seek - and the inspiring, motivational or plain helpful trigger thoughts, feelings, memories or imagery which have a track record of nourishing that wellness or connecting you to it. These are Bubbles.
Simply watch the video on this website, and read the 'Guide' tab in the MEMap App, and you should be ready for Easy MEMap.
A key goal of MEMap is to improve 'the conversation' about this complex difficult illness. It offers PWME both a shared format to define and share their experience with others, and some common talking points that ME recoverers suggest may be fruitful. The intention is not to try to replace a good supportive chat on the phone or a visit. It is to facilitate very focused dialogues where people compare notes on what, exactly, they experience, and what does or might address anything they face. MEMap is basically 2 maps: a map of the wellness or things we want, and a map intuitively breaking down illness into chunks small enough to find or envisage strategies that may feel doable. By sending all or bits of both maps to others, they may hear our story, offer support, add helpful suggestions or gain benefits themselves from the experience and wisdom we conveyed. MEMap actively challenges any 2 people with ME to communicate and buddy each other to both build 2 maps each which fully 'describe' the wellness they seek and the illness they experience.
To communicate via MEMap, both users should download the Android App from the Google Play store and register for online services on this website. Frames are sent from the Frames Outbox, Bubbles from the Bubbles Outbox (accessible from the top right menus).
You can create items to send in both outboxes. Or copy 'Sender' Frames or 'Inbox' Bubbles sent to you by others into the outboxes, where you can react to, edit and reply to them. Or copy 'Your own' Frames or Bubbles to the outboxes. In the outboxes the normal edit options that exist for Bubbles or Frames include an added 'tag' option where you can add or modify a hashtag subject or question to an item (for example, 'Do you feel this?'). You can post all of your outbox or all of 'Your own' items to another App user by inputting your username and password and their username. When you post items a pin will be generated for the username you sent to. You will need to tell, text, email etc this pin to the recipient.
If your device has an email App installed, there is an alternative option to email items to anyone you wish (emailing yourself is a useful and recommended way of backing up information you have written in Bubbles or Frames that has become valuable to you). Emailed Bubbles and Frames will be set out in the email as written text. We are working on a tool to enable those without MEMap to reply to an email like this by sending Bubbles or Frames directly into the MEMap App. We imagine it is more likely that MEMap users will exchange Frames (as opposed to Bubbles) as they attempt to unpick and share issues and symptoms. When creating a new Frame it is possible for it to be a 'Thoughts Box'. This is an opportunity to write any thoughts and notes to add context to the Frames you are sending.
Download items sent to you by ensuring you are in the Wellness Map if the items are Bubbles, or the Reframe Map if the items are Frames. Select Download from the top right menu. You can either use a pin to download a specified set of items. Or check the box and use the username of a Sender to generate a list of the most recent items they sent you. Follow the instructions given to get Bubbles tagged and into Inbox, or Frames into a named screen dedicated to your Sender.