Habitual stress patterns can frequently sit in the background without being fully noticed. It is often the case that before ME has been diagnosed and fully acknowledged - or before or its full implications have been taken on board - variations on some common phrases seem to describe the experience of people with ME. For example, 'keeping going', 'holding things together' (or in), 'carrying a lot on my shoulders'. ME recoverers frequently tend to look back on these words like keeping, holding and carrying as telling their own story about a separation between their lifestyle and what their bodies and health needed. Most people will readily associate a very simple and direct bodily feeling, posture or state with 'keeping', 'holding' or 'carrying'. A sense of their body that fundamentally changes when they envisage releasing the pressure valve and alleviating themselves of the things that are driving the build up of pressure.
While people with ME have a simple duty to themselves to identify stressors, the things which stress us can feel an unholy mess of difficult issues. That mess can be simplified by accepting that only 3 options actually exist. We can:- 1) remove ourselves from the source of the stress. 2) tackle the stressor and (objectively) try to alter its impact. 3) Failing that, in some cases it is plausible to subjectively tackle the stressor by working to soften the feelings of stress it provokes. Taking action on any stressor can start by simply choosing which of these numbers you are going to apply to it.
Changes in lifestyle, our immediate environment, and relationships with others will often involve communicating with other people in fairly clear terms about how things affect us and how they might cooperate. A straight talking dialogue with ourselves will also frequently be needed. It might be useful to start with a simple Frame listing key times when you are likely to feel overly-stressed or put too much stress on body or mind. Then add a Reframe listing the most likely strategies for achieving 1, 2 or 3 above.
Many people with ME describe the stress that being ill with ME adds to their lives. It should be clear that worries and fears about illness can therefore create a feedback loop of increasing experience of stress and illness. There is no easy solution to this. MEMap is designed to put a definite boundary or Frame around difficult issues to clarify them and keep them in perspective. It may be useful to describe worries and fears in a Frame when you experience them. Then at an easier moment, create a Reframe stating your opposing, more optimistic, beliefs about getting better, or how specific instances of fear proved unfounded.
Rest and activity are huge subjects with ME - so as usual with MEMap, just a quick run through of some key points:-
Feeling rested is perhaps the fundamental component of allowing the body to heal and recover. Rest should preferably be taken as a preemptive measure to prevent exhaustion, rather than as a reaction to feeling knackered or the wheels falling off. If a demanding activity needs to be undertaken, topping up the battery with rest immediately beforehand is usually recommended. During the acute early stages of ME, or for the severely affected, people with ME may need to do little other than rest. Rest that allows body and soul to feel deeply rested is something quite different from 'going through the motions' of resting.
With activity and exercise there is great controversy, and contradictory research and anecdotal evidence about the advantages and risks involved. Exercise is generally deemed to be physically and psychologically good for human beings, and where PWME can access those benefits and prevent physical and mental deconditioning that might be ideal. However... the evidence is that, often, PWME cannot access the benefits of exercise and instead experience worsening symptoms. Some medical explanations of ME explain why this might be so, and a couple of small studies have indicated that, even where participants increased exercise relatively successfully, ME symptoms might not necessarily improve.
What can we do? The goal might be to do the level of activity and exercise we can manage without worsening symptoms and without anxiety that it may harm us (anxiety about activity is a stressor in itself). The key to achieving this seems to be to establish a baseline of activity/exercise that we feel confident and comfortable about managing. Our own detective work will often be crucial in discovering this (and growing wider 'body wisdom' about the kinds of things we can/can't take on). Once this baseline is established, the aim is to try to follow a regular pattern of doing a percentage LESS activity/exercise than the baseline level. Feeling you can do much more can be a false start: instead of doing that much more, adjust your baseline upwards a bit and see how that goes for a while. Gentle stretching is usually recommended for the least able. Beyond that varied activity and exercise is often recommended so that different parts of body and mind get a workout - and boring routine is replaced with enjoyable diversity. Also kill 2 birds with one stone: let go - more expressive less regimented types of exercise can simultaneously relieve the frustration and anger that inevitably accompanies a life of restrictions and illness.
Being our own very personal detective is crucial with exercise: it is easy to live other people's illness and not our own (eg careful gradual steps forward where we set our own boundaries are very different to ME horror stories where over-ambitious practitioners managed the boundaries). Incredibly smart and clear thinking about activity and exercise is ME gold dust. As much as as some highlight the downside of doing too much, others insist that prolonged waiting to feel stronger before resuming activity might inevitably go unrewarded. Finding, with great rigour and curiosity, our own sweet spot in the middle of the differing advice we are offered is a fundamental building block for health. Some people have told us they feel ill but exercise does not set them back - sometimes it helps. Once past the acute stage, gaining more and more strength and fitness has clearly worked for some. For certain types of pain, movement and mobility have actually offered relief from the pain. Some may gain more from feeling carefree than they lose from doing the things they've restricted - one well-known GP who is a keen supporter and provider of biomedical input for PWME speaks of a marked trend among us of 'hypervigilance'. Some can do more surrounded by nature than they can do in other environments - but again that theory should be tested gradually and carefully.
Amongst their difficult experience of illness, some people with ME have reported regular instances or periods of feeling pretty good, feeling great relief from their symptoms. And by journeying further into what feels good and 'right' at these moments (things from being in the bath to cycling have been mentioned) they have sometimes developed useful perceptions about what precisely it is that offers this 'feelgood'. Questions arise like, 'Is this a quality of feeling I can replicate in different situations - can I nourish and nurture this feelgood more generally in my life?' Or, 'does this feelgood offer me clues as to what my body needs to feel better more generally?'
MEMap is very much about capturing these kinds of often hazy perceptions and going back to them at the appropriate point to see if they can be developed into useful strategies. Note your feelgood moments in a Reframe. Later you can adapt both the Frame and Reframe to describe any thoughts about a direction of travel from difficult issues and experience towards the feelgood stuff.
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 and living with a lighter load. 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'.
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!
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.