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Config part 1: Emotional
This page of the Config Journey looks at the emotional side of ME: things like mood, self image, dealing with other people and possible sources of deeper trauma are covered. Central to this page is getting past the prejudices of those who insist that ME is a psychological illness, and being open to the possibility that any difficult illness may have very real emotional consequences.
Click here for instructions
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.
Low mood is a known immune response suppressor, so it's very unhelpful for ME. But it is a natural - some say inevitable - response to illness, life on the sidelines and all kinds of other difficulties and frustrations that the ME community know all too well. The 'mood thing' is a tough one. The MEMap ethos is always to take the 'overwhelming' out of ME by tackling it's constituent parts: accepting that our mood is regularly low and getting treatment specifically for that is always recommended.
When low mood manifests as 'negative thinking', taking preemptive action is much more doable. There are many techniques for softening and challenging the veracity of negative thinking. The Reframe Strategies section in the App briefly covers some. MEMap is obviously well suited to identifying and putting a clear boundary or Frame around a negative thought as a basis for further exploration and to limit any tendency for negative mindsets to spread beyond their original source and become non-specific grey clouds.
A distinct subset of ME recoverers seem to identify a process of breaking habits of negative thinking which they feel were contributing to the physical strain on them. The Stop Process was often the tool they used to achieve this (see category 12 on the Stress and relaxation page)
The App can be helpful for describing the type and feelings of low mood, and spotting repeating patterns, so you are better equipped next time your mood dips. When your spirit starts to lift it is really useful to create a Reframe describing what feels better and how. So next time you may be able to intervene proactively and get the ingredients for mood lifting in place earlier. Low mood can easily eat away at the motivation to stick with those strategies or habits that work for us. Planning treats is never a bad option when feeling low. Neuroscientists recommend stitching a treat into any plan we want to keep to. Our regular experience of that treat during or directly after the activity will make us come to associate this activity with the pleasure of the treat - so that ultimately the brain may associate pleasure with the activity itself.
Finally finally in this project the prohibition on recommending medication or supplements is lifted: many clinicians worry about widespread vitamin D deficiency. PWME who don't get out regularly are particularly prone: sitting in the sun is a proven mood booster.
'ME buddy' illustrative example
Issue. How to categorise the low mood I experience? I don't think I feel depressed - if I could just borrow someone else's body I could be having a fabulous time right now! It is probably feeling physically a mess and horrible which is the thing that really makes me despair. Missing out on things in life does affect me, but less - the physical feelings are a bigger part of my low mood.
Reframe. Make a mental note of this for future reference:- I feel good, just come out of a low spell. So many things had got out of control, and felt I was struggling to stop a holy mess of stuff getting worse. My energy drained, symptoms increased and my mind got completely scrambled. Improvement came when I remembered to shut the bedroom door on everything and replenish. As usual, once I got to the point of totally giving into feeling a mess, letting it happen and hitting bottom, my mood, then energy, started to bounce back.
"I turned into this person who couldn't do anything. I hated life. I just felt like a complete shell of who I used to be." "I suffered with depression and feeling overwhelmed and not knowing what was going on."
Positive mood is a known immune response booster. Naturally positive thinking is a difficult trick if you are ill, and, done badly, an easy way to make your friends run away. But MEMap unashamedly advocates positive thinking - though as a skill, not a way to force attention away from difficult feelings that may need to be acknowledged. At worst if you are ill a few minutes connected to a blissful memory or state of being may soften a tough day. Also the evidence suggests that optimists achieve faster recovery from illness or surgery, enjoy healthier, longer lives and are more successful at sticking to recovery plans.
In short there are so many good reasons to grab some positive thinking for ourselves that contriving a way to achieve that is thoroughly recommended. Studies show that acting 'As If' happy - eg by artificially smiling or laughing - even replicates some benefits of genuine happiness. Perhaps the key to gaining positive thinking skills is a technique or mindset that fits. Someone who was naturally sunny before ME may simply need to re-engage with their innate mojo. But the sceptics and cynics among us will probably need to find our own most convincing, philosophical, non-superficial basis for being positive. MEMap should be ideal for reinforcing that: make a Reframe stating your philosophical grounds for, and belief in, positivity. Then over time, build a Frame noting the circumstances where you find you depart from (betray) your chosen belief. Take it from a cynic: this works admirably!
Research does exist which suggests that forms of positive thinking can be a learnt skill. For example, practising gratitude for what one does have (glass partly full not largely empty) for 30 consecutive days has been demonstrated to inculcate a longer term glass half full attitude to life.
'ME buddy' illustrative example
Issue. Guess what? My life has not been awash with positive thinking for the past few months. Understandable, who would be positive about this! With ME any kind of positive thinking does not come naturally - my body and my instincts do not send me messages likely to naturally initiate a stream of happy optimistic thought processes. The positivity I know will help me just does not come calling.
Reframe. There is a disconnect between my feeling and my thinking. I think life and the world is an amazing beautiful opportunity. And I think my spirit is strong, strong enough to do whatever it takes to rise above illness. Getting this information into how I feel and experience the day needs a more successful strategy. Gratitude works for me, it seems to put a lot of emotional stuff in a good place: it accentuates the things to feel good about, swaps anger and high expectations of people with an easy more tolerant acceptance of others, places me in a rooted humble place.
"Stay positive, trust your journey, celebrate EVERY success no matter how small." "As my life slowed down I truly began to appreciate the small beautiful details of nature." "The moment my head resurfaced from beneath the waves I knew my body would follow. I had a real sense of trusting the universe."
As illnesses go, ME is a perfect storm for self-image. Belief that we are valuable people who should expect and deserve great health (AND great input for our health!) is hugely helpful for walking the difficult path to recovery. But frequently we can't do what we once could, we can't be who we want to be, and what we do manage can feel (and look) a pale imitation of our old selves. And there sure ain't the sympathy or admiration for our best efforts which other illnesses naturally attract. How to cover self-image in a paragraph? Well actually a trawl of the various evidence on ME, stress and the immune system does reveal a rather compelling message that some with ME might enjoy...
There appears to be a sense of self that is ideally suited to recovery from ME. ME recoverers often joyfully explain notions of being a pale imitation of their previous self giving way to a profound and happy change in their relationship with themselves. Some (and many practitioners) clearly see a reconnection to their 'core' self, or fundamental change towards new ways of living their lives, to be central to ongoing recovery. Various practitioners mention that the recovery path often starts with patients shifting from putting others (or the expectations of others) first, to asserting their own needs. Tuning in to bodily signals, positively and without fear, to hear the messages symptoms might be sending, is often recommended as crucial part of this shift towards the self. Turning off the inner critic, turning off any battling with oneself, and being kinder to, oneself, also get a lot of mentions. This whole process could be characterised as moving FROM trying to meet a standard or assessing what one 'should' be or do, TO much stronger contact with one's own feelings and instincts. And this process is exactly what experts on avoiding stress recommend: with a strong sense of self 'you know who you are and know what to do'. As we know, avoiding stress is essential with ME...
So... some 'me-first' self love might be a more vital medicine in ME than other illnesses. Sadly the magic pill for this is nowhere to be found in supermarkets, but you can certainly cut and paste this category to your friends and family, with the mission to permit and help you to adopt this sense of self. Be sure to add that supportive relationships have been shown to offer a genuine buffer against stress!
'ME buddy' illustrative example
Issue. I have genuinely got used to feeling like a a pool of water heading down a plughole since having ME. I know that is a brutal judgement, but the feeling does exist. This mentality leaves me working harder to please people and seem worthwhile to them. I work hard to compensate for my inner world feeling so bust.
Reframe. The only genuine way forward is to nourish my truest sense of self. Everything DOES feel easier when I stop fighting myself and do things I really want to do in exactly the way it suits me to do them. The draining away analogy is a fundamental rejection of self. I need to listen to that kind of feeling, dignify it, feel I am worth the effort needed to refind health. Truth is, illness has made me kinder, deeper, more spiritually aware - tiredness should not obscure that.
"I came back home to myself and really connected to the wisdom of my body." "Enjoy the process of putting yourself first, practice compassion with yourself, love and accept yourself FULLY just as you are right now, focus on re-inventing yourself." "I feel the biggest change for me was reconnecting to myself. To my body and my feelings as I began to learn I had been disconnected from them."
Priceless anecdotes abound about the unthinking insensitivity of friends, family, colleagues towards ME. The difficulty of prioritising ME and what we need often arises as a result of the responses, or our expectations about the responses, of others. Feelings of anger and being judged are a natural result. Also maintaining healthy levels of self-esteem while feeling tired and ill is bit of an olympic feat that can make dealing with other people an additional olympic challenge. Yet when the support of others is good, their practical and emotional input is a precious thing. All hail the person who successfully listens, accepts, gets things done and gently checks our thinking and responses to illness.
Difficult stuff, of course. Much of the point of MEMap is for PWME to establish simple riffs that are close enough to hand to stop stressful situations or energy depletion dead in their tracks. In this case, what could make the stress of dealing with others bounce easily off us? 2 quick ideas:-
Any fool knows that being judgemental is an unfortunate, ugly personality trait for the small of mind and small of heart. But us humans sure do allow people to judge us! In simple terms all of us have the choice to be inner directed - to make connections to what feels real and authentic within - or outer directed - to seek and need the approval and responses of others to feel valuable. Accept the deep authentic sense of the world within our bones? Or be at the mercy of needing to impress others - even the dumb judgemental ones? On paper perhaps that seems a simple decision. Written into your App it could become a decision that more easily writes itself into your day.
PWME regularly describe the difficulty of telling people where they are at, what they need, and of intervening effectively to correct mistaken expectations about what they are capable of. The old adage is incredibly useful: if you believe it yourself, others will naturally tend to be convinced by you. If it's true say it, say it loud say it proud. When we assertively and confidently convey the facts of our experience and illness, others will often just tend to see the truth for what it is. If we expend energy feeling doubtful about our right to assert our needs, our hesitant, unclear or angry messages to others will often achieve much less.
'ME buddy' illustrative example
Issue. I really need to put a stop to the demands that Alan and Ann are placing on my energy. But when I tell them what I can't deal with I feel terrible for being selfish. They clearly indicate that I am too much and don't believe ME is that serious.
Reframe. And it is me who is feeling terrible about this?! I need to believe in my own truths. I'm going to give them a clear strong message about how I feel and how I very much wish I did not feel that way. If they do not come round, then I need to consider if they will have to be sidelined a bit.
"I stopped trying to please other people, to please those stupid notions that we are supposed to be a certain way. That has nothing to do with our personal authenticity. When we start to live that authenticity and be who we really are, then we start to heal." "Losing friends can be as painful as the physical symptoms."
Some PWME 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.
'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. 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?
'ME buddy' illustrative example
Issue. My life divides into before and after what happened with Bailey. I don't think anybody is equipped for something like that. My sense of self, will to embrace life and confidence in the world around me did undeniably collapse.
Reframe. After the initial grief and support, that experience got pushed into the shadows of my life a bit. I have packed it away from myself and others. I always imagine they would find my feelings too much, but the truth is, once I know anyone well they usually have some of that kind of stuff in their lives, and where I have expressed myself, it has usually been pretty ok. It is less raw now, and needs to see the daylight.
"It's really important if you've got some sort of trauma, or something going on in your life that is unresolved, that you are hoping just goes away, it is really key to your recovery to deal with those things, to think 'this is the time I'm dealing with it now'."
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 increasingly 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.
'ME buddy' illustrative example
Issue. I feel so grotty, and my spirit feels totally crushed. It really angers me when people think ME is psychological. I usually just think that having a proper emotional life is a luxury I don't quite get the chance to have.
Reframe. This works! Making purely emotional connections with myself is a real way of dignifying who I am and asserting my rather lost rights to be a complex sophisticated fully formed human being. The sense of loss I heard when I listened to my heart is quite something. I'm sure ignoring it has left a real stuck energy around.
"It's almost like I learnt to give myself permission to feel sad... and by giving myself that love it lifted my spirits gradually. It has also taken me some time to reconnect to my feelings and validate what I have been through (or feel now), as I noticed I had dissociated from my feelings over the years to protect myself, and had the belief that it was weak to feel."