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Config part 1: Stress & relaxation
This page of the Config Journey looks fairly forensically at the role of stress as a contributing factor with ME. The page also covers relaxation and other positive alternatives to stress in its various forms.
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.
All across the evidence about ME is the notion that PWME might need to undergo a major re-evaluation of their lifestyle and, in particular, the stress or stressors in it. Either because overload of some kind or burn out can be a contributory cause of illness. Or because once we have ME, the body's ability to tolerate stress is often very poor. It seems this re-evaluation, change, and ongoing detective work to spot stressors represents a major investment in the future.
MEMap is an equal opportunities stress App! By definition if we feel something is a stress upon body or mind, then it is. Whether the stressor is physical, environmental, emotional, lifestyle hardly matters. Also, if there is a stress signal the body will respond: the body seems to be not well designed to distinguish the type or true veracity of the stressor. Many practitioners and researchers believe that some people may get stuck in a 'biochemical' stress response or merely exhibit dysfunction in their stress response pathways - even when environmental factors or conscious sources of stress are not actually present. This kind of stress can be far removed from notions that stress is direct response to stressful things people are doing in their lives, or is a 'psychological' thing.
Stress sits in mind and body. Relaxation skills which work to build our ability to locate a relaxed state or 'place' in mind OR body are a natural antidote. ME recoverers often do report eureka moments or epiphanies about uncovering patterns of stress they experience - or report finding such deep acquaintance with relaxation that pathways away from stress naturally reveal themselves. If ongoing detective work to spot stressors represents a major investment in the future, real commitment to discovering our own very personal routes to profound relaxation may yield equally good dividends.
Even if those of us with ME have a simple duty to ourselves 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 PWME 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.
'ME buddy' illustrative example
Issue. There are a number of stressors which are stitched pretty thoroughly into my life. I am perfectly well aware that stress drains me rapidly, but too often I am already drained by the time I've spotted that something different needed to happen. Clearly identifying what my stressors are is the best way to spot stress coming. Main stressors:- a) running late, b) loud noise, and high octane gaming and film stuff, c) difficult feelings about tasks needing to be done so I push on or feel dread about leaving them still to be done,...
Reframe. If I am really committed to avoiding stress, and am clear about its detrimental effect on me, I can catch stressors before they bite. Take a breath and a pause every 30 mins and reward myself for not slipping, unawares, into a stressed state or stressful environment. a) solved by simple planning (2), b) goodness, just avoid (1), c) some serious thinking about breaking this pattern required (3)...
"Having ME was like having my protective layer taken away. My tolerance of stress, chemicals, some foods, busy or noisy environments, anything emotionally taxing, the viruses people around me had, became really low. Recovery began after I did what I could to cut down the impact of ALL these things until I was more resilient."
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 PWME 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.
'ME buddy' illustrative example
Issue. I know people with ME who seem to have the easiest natures. Any sense of personality traits being a factor in my illness looks like a half-baked psychological explanation of ME. There are a lot of people whose lives are all over the place and they did not get ME. I'm keen to think I'm pretty zen in comparison to them.
Reframe. Yeah but... the mission is absolute zero tolerance of stress: happy to examine my soul for any sources of pressure I put on myself. I am a perfectionist, no doubt: a lot of effort put in to avoiding the averageness and messiness of illness. My first instinct when someone wants something is to want to offer it - I can just button my lips and button that thought.
"I was a doer. To learn to be, to learn to live in the moment was the only way to go. I needed to slow down, to stop living a driven life. Learning to be be relaxed, more laid back, able to live spontaneously, is a positive outcome of ME."
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 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.
'ME buddy' illustrative example
Issue. Sometimes I feel very weak or totally frustrated - all my bodily and mental resources have drained away. At these times I often feel desperate about the future, try to stick to plans I've made, and can end up in a real state for days.
Reframe. It is such a huge relief to hear and act upon the 'give up and let go for a while' signal my body and mind is giving me. Sometime I hear this signal days too late. Instead I need to spot the signs quickly and put these strategies in place:- go to bed and let the desperation bottom out; don't think about the future AT ALL while my resources are spent; call Billy, moan about everything, tell him to remind me that once I allow myself to hit bottom, things usually bounce back.
"On difficult days I would reflect on times where I felt worse in the past as opposed to thinking how horrible it was. Of course some days it's hard to have hope and think positive, but I learnt to comfort myself. My biggest advice to you to learn to comfort yourself as you would someone you care deeply about, especially on your hardest days."
People with ME often report, and ME recoverers frequently feel they have successfully tackled, a sense of feeling tired but absolutely wired. When trying to be at rest, it seems there is a feeling that their 'system' still seems to be 'on', overworking, overstimulated. Various theories have been attached to these reported sensations. Terms you may have heard include: being stuck in fight or flight mode, autonomic dysfunction, dysfunctional hypothalamus-pituitary-adrenal axis, limbic system dysfunction, arousal of the sympathetic nervous system or amygdala.
Practitioners and commentators often refer to the 'general adaptation syndrome' identified 80 years ago by Selye which appears to have withstood the test of time. A simple description may ring bells for some PWME: at stage 1 a stressful event releases cortisone and adrenaline in an aroused fight or flight response. At stage 2 unchecked repeated stress causes a process of adaptation as the body gets more permanently into a state of arousal. Though the adaptation can be fairly successful, health suffers, warning signals may have been ignored. At stage 3, the adaptation breaks down, and health crashes.
There are various theories and research about where ME may fit into this kind of process. And they certainly don't exclude a part for viral stressors, environmental toxins, a traumatic event or a build up of lifestyle stress. But it is not the role of MEMap to make any conclusions about all this.
Instead for the purposes of MEMap, it may be helpful to imagine we have an 'ON' knob which at any point will be set somewhere between 0 and... 11. Even though we may have done little or nothing to put the knob at its current setting, it may be possible to monitor it, accrue wisdom about it, and find workable ways to ease it downwards. It can be handy to think of your physical energy, your mental energy and your breathing as 3 partners that work together. If one of them is racing ahead of where the others need to be, what might bring it back? ME recoverers sometimes report a journey of self-discovery here that is far more interesting than they expected. Some recoverers clearly feel they have coached themselves to soften their sense of arousal. By opting in to the next category ('Interrupting' stress, illness or anything) your App will be configured to give a flavour of this kind of coaching. Alternatively, the full range of self-awareness, calming and anti-stress techniques generally available may help soften any arousal identified.
'ME buddy' illustrative example
Issue. Often it is hard to get into a calm state. There is nowhere in body or mind where I can come back to myself and find a nice settled place to just 'be'. This is draining, keeps me from finding a rested state and is hardly a good base for long term healing.
Reframe. Identifying that my energy has become unbalanced and needs to be listened to really helps. Get in touch with my breathing: slow and deep. If my body feels a bit manic, shake out the fizzy energy. If my mental state feels overstimulated:- direct deep breaths towards and into my brain, try not to have any thoughts at all: work on replacing 'thinking' with 'letting' my mental state fall and sink further and deeper towards the centre of my brain - or get out of head and ground myself in the body.
"I needed to tame my brain. I had a propensity to go too fast." "I no longer feel constantly anxious about whether I will have the energy." "I am a high energy person. I had to learn to contain that."
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 those feelings and thoughts. And succeed in encouraging pathways in the brain that match them. 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.
By opting in to this category your MEMap will contain 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 we are not too keen on, so we can re-focus and start the kind of chapter we prefer.
For those who find even the most benign version of the Stop Process troubling, NOT opting into this category will remove materials relating to it from your MEMap. There is some difficult history with this process, you won't be alone in doing that.
'ME buddy' illustrative example
Issue. Being ill is not an easy experience. I feel ill a lot. Also, like anyone vaguely human with a long term illness, my head is regularly the scene of stress and various anxieties which are not typical of my old pretty positive self.
Reframe. I have done my research and I'm really convinced that it is possible to choose to actively connect to some easier, more relaxed, more positive mindsets which are a real fit for who I am. Without needing to go through an exhausting process of dwelling on negative things or unpicking my soul, I believe I can simply build who and what I want to be into my days. I don't need faked positivity, or to set goals about taking on greater levels of activity: I can just engage in trying to move towards something different.
"The Stop Process really helped me shift forward in to a more hopeful and positive state. I found renewed energy, felt more `in the world` than I had for years, and much less brain fog. I think I succeeded in stopping the runaway worrisome thoughts that had no basis in reality and would have furthered the stress on my body if allowed to run wild in my head!"
Either as a genuine replenishing antidote to ME, or simply as an appropriate response to stress, fatigue or limited mental resources, many ME recoverers report that regular use of a relaxation technique was central to their improvement. In addition to the reported benefits to physical and psychological health, deep relaxation seems to create an excellent reference point of better more balanced energy for PWME to set against their symptoms. Relaxation is a skill - like dancing. The better our skills, the more they will grace, consciously and subconsciously, the parts of the day when we are doing other things. Building a space in ourselves which comes to 'know' the most profound sense of calm and peace is undoubtedly for some a beautiful life transforming process. Which relaxation technique? The one you like will always be the easiest to stick with...
For PWME who don't maintain a relaxation practice - or feel they can't - a question. Do the lifestyle, activities, discomfort with stillness or likes and dislikes that keep you from relaxation actually contain a very good reason why a regular relaxation practice may be very helpful?
Relaxation should be part of a greater whole. If your body or mind feels agitated, or you feel that something is eating at you when you are trying to relax, this may be a pretty good sign that some more direct way to express that stuff needs to be found before relaxation is attempted.
Some with ME have made good progress with complementary therapies intended to tackle deep (or profound) body or muscle tension or trauma. 'Bodywork' is often administered hands on by a practitioner. Recoverers have also reported quite transformational experiences after following protocols offered in books for releasing deep bodily tension or 'trauma'. In all cases, treading wisely and gently, and in consultation with your GP, is strongly advised.
Since we do it all the time, breathing could be seen as the master controller of relaxation. ME recoverers report the value of a range of breathing protocols. Some of these seem to completely contradict one another - so no explicit mentions here. But it is safe to say that getting the breathing running smoothly in the background, so that any habit of hyperventilation tends to be naturally outmanoeuvred, potentially offers deep rewards. You're probably the best judge of the technique or tutor that may help you achieve this. Pausing a couple of times a day to notice how well your breath is nourishing your energy might just be the most time/effort/cost effective tool for ME.
'ME buddy' illustrative example
Issue. Feeling good has been a rare thing while I have had ME. At worst I am in real pain, then there is total exhaustion, sometimes everything just feels a mess, at best there is very little that feels nice. At almost all times I feel that I am getting ahead of myself: I don't have the resources to keep up with what I am trying to do.
Reframe. Creating some real space for (and IN) myself and connecting to blissful relaxation is so amazing. Whenever I DO do it, I always think 'why don't I do this more?' As I am getting into the habit of regular relaxing practice it feels like I am building a place in myself which 'knows' deep relaxation well. It's a place that increasingly stays with me when I am not actively trying to relax.
"For me relaxation was a spiritual quest to find what was right for me. First I needed something outside of myself, outside my body. Then taking my body to alpha level relaxation was important. And autogenic training."