This category is about what is going on right at this moment in the 'here and now' and the many here and nows that make up every day. Many people with ME and ME recoverers report that, on inspection, their days were somewhat different to what they thought or acknowledged. This crops up time and again: identifying the kind of energy, stress or type of thinking that was running in the background of the day seems to have formed an important part of many recoveries. Some describe artificially 'keeping going' without quite seeing their tiredness or the warning signs of illness. Some report surprise at the degree and type of overstimulation or stress they habitually experienced - and wished they had spotted this earlier in their illness. Some come to feel their life was simply running along a track that sucked a lot of energy out of them. It seems reasonable to say that most people are often so habituated to their own habits, so 'inside' them, that spotting a habit or seeing alternatives to it is far from straightforward.
All of this suggests a simple good habit to check to uncover what our average moment is actually like.
The trick is to envisage the clearest state you can of pure but wakeful stillness and 'centred' self-nurture: not excited, stressed, anxious, busy of mind, not focussed on things you need to do soon or anything that has now passed. Think of it as having a purely neutral gear - like a car - where no energy is being expended in any direction. What works best is to write a few personalised words to begin to capture your own sense of what your most neutral state could feel like (do this in a Reframe). Once this is done, the idea is to uncover just how much this neutral or 'energy efficient' state is actually present in your days. All you need to do is occasionally take a pause in the day and check in with body and mind to see what the present moment is genuinely like. Ask, 'where am I at relative to my most neutral gear or state right now? Am I able to slip fairly easily into this neutral state? If not, what is the nature of the energy which is occupying the space that neutral wants to occupy?' A sense of being wired or burdened, an excitable buzz, a sense of body and mind being out of step, racing mind babble, hyperventilation, anxiety, a need to be stimulated or distracted, gloom, muscle clenching, more subtle tendencies like feeling 'on' or watchful... there are endless ways we may be burning more energy than we imagined. If these pauses in the day offer any useful new perceptions add them to the Frame corresponding to your original Reframe, so that it comes to describe a rich picture of what your here and nows are like compared to a nice gently ticking over neutral state.
May sound simple, but it seems this can be a surprising and revealing practice.
Some ME recoverers clearly feel they have alleviated many of their symptoms by interrupting - continuously acting to try to stop or break away from - things they variously describe as:- Unconscious stress responses. Feelings of being stressed and/or overstimulated. Stressors like fear or negative thinking about symptoms, or being self-critical and lacking self-nurture. And even the physical or mental sensations of illness.
NHS consultants MeMap has spoken to have clearly seen a common process and success in some of their patients which has sparked their interest. It is simplistic and unscientific to generalise this anecdotal evidence into conclusions about the nature of ME for those beyond the subset of PWME who report this success. But equally it would be neglectful to ignore evidence on what has worked for some:-
Science does indicate that the human brain has huge 'plasticity'. In simple terms this means that habits which people keep, tend to establish pathways in the brain. If we repeatedly keep new habits they can increasingly establish their own pathways, partly at the expense of the old pathways associated with the old habits those new habits 'replace'. This is uncontroversial stuff. Irrespective of ME, if we regularly, consciously interrupt feelings or thoughts we don't want, and suggest a clear alternative pathway or habit to the brain, we may succeed in positively diverting our feelings and thoughts. And succeed in encouraging pathways in the brain that match those feelings and thoughts. Does this relate to ME more than anything else humans might want to change? At MeMap we genuinely have no idea, and know of no science which indicates it does. But the potential to 'feel better' and differently clearly exists in ME and elsewhere.
In simple terms, the thinking of various practitioners tends to be that if an unconscious stress response has been wired into the brain, then regular conscious intervention to interrupt or break that wiring will degrade its impact on clients. This seems perfectly plausible. However, hopefully the previous paragraph indicates that it is not necessary to buy into this idea of an interruptible stress response to see the wider possibilities for 'interrupting' the day as a means to create change. Therefore MEMap is designed to offer you some flavour of the positive change ME recoverers report, without pretending we have any understanding of how much science will ultimately come to back up the theories practitioners have proposed.
MEMap Lighter Load contains a written and audio guide to give you a flavour of how it might be like to try to interrupt arousal, stress, feelings of illness or anything you would prefer not to be thinking or feeling. The aim is to give you MEMap's own broad brush take: a safe introductory flavour of what others have done. Like everyone else we call this the Stop Process. It is a process which predates any usage in ME: all it really is, is a simple definite way to tell our body, feelings, conscious mind and unconscious mind that we want to end the chapter of something difficult we are not too keen on, so we can re-focus and start the easier kind of chapter we prefer.
Our emotional lives can be a casualty of the battle to keep a united front against those we suspect think that ME is not a physical illness. Even the practitioners who are most passionate advocates of ME being purely physical state quite clearly that experiencing ME is bound to impose difficult emotional demands. One infamous practitioner describes the physical processes of ME as potentially causing an emotional stress 'so complex and so incomprehensible to the average person'. A very genuine grief can be a natural response to the loss of a healthy active life we once had.
What recoverers have repeatedly said suggests the value of regularly thinking not in physical terms, not even in 'whole person terms', but creating a definite space to think or feel in PURELY emotional terms. Why? Because acknowledging, for example, that 'we feel terrible', covers so much information that the emotional component can easily go unheard. Getting into the habit of asking ourselves, 'How do I feel emotionally (right now)?' or 'What do I need?' would seem to be a genuinely intelligent acceptance that self-care is needed and should be offered. It can be a surprisingly liberating and illuminating process.
How to respond to the answers we receive? Dwelling tiredly at times when we lack energy to seek meaningful resolutions should be ruled out. The value of sitting mindfully with emotions, accepting them without judgement and being our own best friend is icreasingly verified as a sound approach. Accepting emotional issues that exist can be easier than we imagine, and more fruitful than resisting them. Studies show that suppressing or bottling up emotion is associated with poor health - 'unexpressed emotion has to go SOMEWHERE'. Research demonstrates the benefits to health of finding an active way to express feelings. This may involve finding a professional or sympathetic ear. There is evidence that simply expressing feelings in a journal improves immune response and health. MEMap is designed to note down difficult stuff (as a Frame) whenever it arises. Then later process and grow strategies for it. When similar feelings occur at a later date you then have a template for recognising and tackling them better and quicker.
Some people with ME attribute their illness to a virus, exposure to toxins, a build up of lifestyle stresses etc. Others mention a significant life 'event' which they feel coincided with the onset of ME and contributed to the overload which caused illness. Or they say they are quite comfortable with the suggestion that emotional issues placed a significant burden on them. Additionally, if ME recovery involves lightening the load we carry as much as possible, any difficult life issues which may have no real connection to ME may demand the best resolutions that can be found.
'That thing', then, is the elephant in the room with our ME - the life event(s) or emotional stuff which we suspect may have made us susceptible to illness or add to the difficult experience of living with it. ME is a greedy illness that can occupy our work, rest, play, our eating... And despite the hideous attitudes to ME which many experience, it is a useful short label for conveying our situation to others. Our personal version of 'that thing' can easily get crowded out by ME or neglected. It surely has its own needs and requires its own share of attention. Also it often does not have the easy label which readily brings it into the softening light of every day communications with others. Various PWME have told MeMap stories about carrying huge weight on their shoulders which the right support or sounding board relieved beyond their imaginings. People have also spoken of realising that although big capital T type Trauma had not occurred in their life, they came to see that small t traumas had eaten away at them without getting the validation and recognition they needed.
It is way above MeMap's payscale to address these kinds of issues directly, but 2 suggestions for how the App may be a useful tool. First, the Reframe Map is designed to clarify any issue, to put a definite Frame around it, to stop it being a grey area by saying 'this is exactly what it is'. That process of itself is intended to be a useful starting point for finding ways forward (Reframes). Second since MEMap is a tool for communicating about ME with others, the category 'That thing' is designed to become a shared shorthand for inviting each other to share and gain support for our own elephant in the room. What's your 'That thing?' Are you getting enough support for it?
An illness like ME can be truly awful. Being proactive and constructive about recovery is all very well - sometimes a howl of totally unconstructive frustration will feel more natural. Sometimes the wheels come off and it is necessary to just go with the flow. Having a definite 'go to' place when the wheels fall off physically or mentally can be a better alternative than the stress of tackling every crisis anew. Building a habit of going to this same 'place' makes us quicker to see this safe haven at times when our clear thinking skills are at their least. That repetition might also be the most effective way to build a skillset for dealing with the lowest points of ME.
A 'go to' pressure valve naturally needs to be a very personal choice. But it might include a friend who accepts being a sounding board for frustration and knows you don't want helpful suggestions. Or an activity to express and release the physical feelings of frustration or despair. Or giving up trying and diving under the covers - or simply being very nice to yourself - until you bounce back.
Despite trying, it was impossible to escape it: wherever one looks, practitioners of nearly all varieties, and some ME recoverers, seem inclined to mention an ME 'A' type personality or a simple ME personality type. Though some research does exist to back up this anecdotal evidence, some of the methods and conclusions made bear little real scrutiny (often plain silliness emanates from scientifically trained professionals).
Nevertheless MEMap's job IS to respond to observed trends, so this one has to be taken on too. It seems entirely unnecessary to stigmatise or praise people with ME by ascribing character traits to us. Instead, surely all but the tiniest minority of human beings would appear to possess personality traits of some sort which, in given circumstances, will add greater or lesser stress to situations they face. Given the need for PWME to avoid stressors to the utmost degree, it probably is necessary to ask our friends to help spot - or scan ourselves for - where we are most likely to place stress upon ourselves.
What's your fix? Are you, were you, an adrenaline junkie, a high achiever, a worrier, a perfectionist, self-critical, a people pleaser, an indecisive procrastinator, a poor time manager, someone who likes to be in control? Have you habitually been the one who cares for others (before yourself)? One practitioner insists we ask how good you are at doing the kind thing for yourself.
Whatever your unique fix, it will probably be helpful to recognise it, befriend it, and ask it to be more of a friend to you. ME recoverers and practitioners speak of a fundamental re-evaluation of who they were as a person being, sometimes, a key enabler of recovery. For those who feel the lifestyle they lived was a partly a cause of their ME, there is often a sense that their health continued to be poor until the 'way of doing things that lead to illness' changed to a rather different way of doing things.
People experiencing illness naturally need to find a zone which they find comfortable and safe while they are feeling unwell (most with ME will testify how others can demonstrate an almost brilliant failure to understand this simple need.) The danger is... that necessary protective cocoon can become an increasingly restricted lifestyle we get used to: deviations, any changes, good or bad, become harder. A useful question: can we easily break out of normal routines and environments, even if no additional energy is needed to do it?
Imagine for a moment feeling well and having some energy, right now. Could you go back to your pre ME life or some new better life that awaits? If not, how exactly are you not ready? What needs to feel different before you can easily move forward? The road ahead to the rest of your life: what, other than ME, stops it being a beautiful road into the sunset? Which non-ME life circumstances and issues need to be resolved?
Some practitioners and ME recoverers have mentioned that it is sometimes necessary for PWME to adjust their idea of what an acceptable degree of wellness would look like. This process often seems to involve being willing to move forward and re-engage with the world even though things are not as perfect as we'd wish. This kind of 'acceptance' that an 'ok' recovery is in fact very much ok, seems to have offered many ME recoverers a good springboard.