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Config part 1: Change
This page of the Config Journey looks at the dynamics of seizing the moment and creating change for ANYONE who may have a long-term health condition. The page also attempts to distil the reported wisdom of those with ME who have attempted to break the cycle of feeling very stuck within a life of illness.
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To include any category in your App, check the box to opt in. Add your thinking for this category by typing into the 2 input boxes. In the grey one describe any initial thoughts on your own issue or symptom in this area. In the yellow one note down any helpful strategy or solution you know, or the kind of solution you want to find. Please click Save at the bottom of each page. For those wanting to minimise typing, selecting a 'prompt' will replace anything currently in the input boxes with generic 'starter' responses for that category. If you opt in to a category but don't type anything, information about the category will appear in your MEMap App for you to add thoughts when you are ready. YOU ARE STRONGLY ADVISED to do this Config Journey on a computer with a keyboard and mouse.
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 PWME 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 checking process to uncover what your 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.
'ME buddy' illustrative example
Issue. When I check in with a moment during the day it is often a surprise. The average ticking of my mind frequently includes a slightly wired buzz, and a sort of anxiety which is not about anything specific - a mild foreboding. There is also usually a tightness in my body which sort of matches the foreboding. The tightness is no big deal, just a gentle restricting of my flow which I can let go of as soon as I am aware of it.
Reframe. My neutral gear is this:- feeling very still in myself, breathing slowly and deeply into my whole body. Switching off from what is going on around me or what I 'ought' to be getting done - 'switching in' to inner things, being very present within both mind and body. Floating above my current surroundings, taking a bird's eye view of everything.
"I don't think I was aware of it, but a lot of the time I used to concern myself with how things would/could turn out." "Everybody thinks I am an upbeat guy. After years with ME I realised what seemed positive was actually a real hyper kind on energy that was never easy... I needed to stop that draining me."
Thoughts about how this could serve you
Recovery from long term illness requires change, a culture of change, a shift away from something unwanted to something better. This may involve an occasionally painful process of moving on from 'old ways'. It may equally represent an exciting opportunity to clear out dead wood in our lives and discover renewal. In simple terms change management needs barriers to change to be minimised and incentives to change to be maximised. In that respect PWME are no different from anyone else: if there is road ahead in front of us without excessive barriers (other than ME) which leads to an enticing future, taking on ME will be easier.
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.
'ME buddy' illustrative example
Issue. Sometimes I think how great it would be to not have ME, fantasise about wonderful things I would do if I had energy and felt ok. At other times the future without ME takes on a rather different light. It is hard to get a real sense of how the day to day details of the new life I would be living are going to work for me. At these moments my present life in SOME aspects feels an easier and more certain option than the uncertainty of what I will be doing out in the world in the future.
Reframe. I am right about the wonderful things being well will offer. But it seems wise to have an honest forensic dialogue with myself about anything that could be a barrier to really cherishing my life post ME. What is the disadvantage of that life? Getting used to functioning easily and confidently out in the world again 24-7! If I project forward to imagine doing that while my energy is still zapped, it will appear difficult. But through the reality and lens of having a good level of energy, yes there will be an adjustment, but it will go far better than I can imagine right now.
"The illness had built so much fear in me. I needed to ask myself 'my body is physically better, why can't I insert myself back into life?'"
Putting it plainly, a clear sense of the many good things life is going to contain post ME is an ideal way to galvanise the spirit and offer incentive to stick with a recovery plan that feels hard. For some, though, this can be an unpsetting or frustrating reminder of the life they want back. Or for those who tend to push themselves, it can be an unhelpful invitation to prioritise achieving over healing. So creating your own clear sense of a future that feels genuinely enticing has got to be a process that works for you. There are somewhat grandly spiritual, and more mundane, levels to this:-
Knowing what the actual practical details of a good future might be, and knowing that they can fall into place when we are ready, is important.
At a more elevated level, the textbook goal is to 'connect with our life purpose'. And if we can locate an inner dream or a destiny we were put on this planet to fulfil - all the better. With ME, it might be smart energy management to put more emphasis who we can 'be' than on what we will 'do'.
Planning in smaller steps - towards treats or enjoyable events in the near future - might provide the kind of focus which will suit some better...
If it is hard to find a realistic attractive goal that really speaks to us, this can shine a very useful light on our illness. For example, it is common with ME to feel so consistently dreadful that it is a struggle to even envisage feeling good. A Frame can be used to describe which 'parts' of body or mind have become so switched off to good feeling that we can barely imagine it. What nourishment do those parts thirst for? If there was something you really wanted to enjoy, which kind of miracle massage or magic 'vitality injection' would be needed?
'ME buddy' illustrative example
Issue. The feelings and sensations of being ill mean I experience the world through a filter which lacks a lot of life and zest. Sometimes days and days pass where everything seems greyed out. Getting motivated to keep to my recovery plan is tough. It is hard to see what I am trying to get myself motivated for.
Reframe. Once I feel better, life will be full of colour again. In fact it will feel more colourful because I'll appreciate it fully after the grey days of illness. I am so sick of life feeling like a bunch of bad half-baked compromises, I lust for the feeling of being quick-minded, curious and involved in the exciting world around me. I promise myself the following rewards for working at recovery in true technicolour:- I will rejoin those lovely people at that art class overlooking the water next term. Trip to Florence next year...
"My 'aha moment' was to open myself up to the idea that I had this life purpose. By applying my assets - the gifts and talents I was born with, and the dreams I wanted to go out and experience - I could get excited about my life and energise my body, energise every cell."
The majority of the ME recoverers MeMap has spoken to have a pretty clear sense of why they improved, and of their corresponding path to illness in the first place. Despite the variation in these stories, the overriding impression is one of deeply held personal truths that have a genuine ring of authenticity. Surely there is crucial information here for others: ie, for many our own perception of what might have made us susceptible to ME will be the vital clue about the route away from it. Questions like, 'what are the roots of my illness?' 'Have me or others addressed those roots and pulled them up?' 'If not, what are the sensible strategies to remove myself from those roots?' may yield fruitful information.
Research for MEMap has involved reading a lot of responsibly written books which habitually tend to say: ME is a serious, complex, often completely overwhelming physical illness; at certain stages/severity the most extreme vigilance and care is needed to prevent deterioration; interventions often risk adverse consequences and should be supervised by a suitably qualified clinician (even though ME is chronically short of such clinicians). While it is very difficult to argue with all this, the overriding sense has been disempowering and depressing. It sure does not reinforce positive belief systems about getting better.
ME Recoverers often express some additional beliefs which do not need to contradict the above. For example, faith in their own will/intuition/spirit as forces sufficient to take them forward, a strong sense of the body's innate healing resources, a belief that their destiny is not to be ill. The hope, optimism or sense of direction such beliefs offer is widely believed to be beneficial to health - 'the biology of hope'. Studies show that a belief in being able to cope strengthens the immune system. To put it bluntly, if there is any way (rationally, spiritually, even rather erroneously) to grab a positive belief system about the limits of our illness and the abundance of our propensity to heal, it is very good medicine. And in all honesty, MEMap was initiated because of repeated observation that ME CAN often in large part be shifted.
'ME buddy' illustrative example
Issue. My instinctive beliefs about how much it is possible to get better are very much dictated by how I feel on any day. When I feel really depleted or horrid my reality is very much a depleted, horrid reality. It is hard to escape that and believe that there are things I can do to make things different.
Reframe. But on better days my belief returns - the possibilities I feel in my body are matched by more optimistic thoughts about my potential to heal. One thing is for sure: people do get better: if they can, I can - I should remind myself of that, and empower myself with that thought, on ALL days. A new chapter of my life IS waiting. If I had to guess the causes of my illness what would they be? What have I noticed in my own experience which corresponds to stuff often found in the literature on ME?
"I wish I had perhaps not changed my life so much, selling the car and moving back home sent bad messages to the mind and body about recovery." "Belief was probably the most important factor in my recovery. I would seek out as many recovery stories that I could find and re-read them or listen to them as much as possible to convince myself that I could recover."