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Config part 1: Practical
This page of the Config Journey covers fairly pragmatic commonsense-based approaches to managing ME.
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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.
Ground zero with MEMap is the underuse of strategies which we know work. Over the course of long illness with periods of progress and difficult crashes or relapses, many PWME accrue a wealth of useful strategies and solutions which get discarded and half forgotten. MeMap has heard so many reports about PWME making progress then experiencing disappointment. Naturally we want 'a solution', we wonder if we have found it, then there's a big come down when hopes are dashed. A GP who experienced ME offered a protocol for ME which recommended the process of collecting more and more little steps forward, adding up the 5 or 10 percents to get towards 100%. It is very likely that our best strategies may not have worked out as well or as quickly as we were hoping, but did contain one of those 5 or 10 percents that can add up to a bigger number. So... some forensic analysis of the past might be useful. Which were the better times during your illness? Were any babies thrown out with the bathwater of initiatives which proved disappointing? Sometimes the ways we find improvement can feel inconvenient, or at odds with the ways forward we expected: is there helpful information we are omitting to acknowledge? Making a quick checklist (a Reframe) of the best successes or strategies we have experienced, and the issues they seemed to work for (a Frame) is a useful way to clarify our best wisdom and keep it near the front of our minds.
'ME buddy' illustrative example
Issue. Over the many months of my ME there have been some good moments when a lot of things started to make sense. I felt really good after discovering strategies that seemed to help. Then something interrupted my flow or I had a few days of not feeling well, and lost my momentum. The net result is that the past is littered with promising initiatives that I got disconnected from. Once the immediate benefits stopped coming, or something distracted me, it was hard to keep making the effort.
Reframe. I need to get over the cycle of getting too hopeful then too disappointed when I start a new plan. And give them a chance to work and build. I want to collect all the things that helped so far in one place to ignite the possibility of using them more:- proper rest periods with TOTAL switch off; keep up my gradual gradual improvement in fitness; zero tolerance of my habit to run late and get stressed; start the day by feeling vitality with yoga stretches; sleep early ; keep zoning away from stress towards my perfectly calm perfect future as taught by Hans.
"It really hindered my ability to recover, that belief set that you are different from those who have recovered. Stop looking for a one treatment plan: you need to add up your arsenal until it starts to work."
It's so easy to do. We feel rubbish, it seems inevitable that the next day will be similar whatever we do, so... the fairly simple textbook stuff about good ME self care gets ignored. It certainly seems to be the case that some PWME develop lifestyles that contrast quite significantly with 'helpful habits' there is reasonable consensus about. These habits may not offer rewards tomorrow but they are probably solid building blocks to sustained progress. The ABC of ME is widely discussed elsewhere: MEMap is designed to be a quick checklist of key info and wisdom. So just some examples about what is meant by 'the ABC':-
Good sleep hygiene is said to include a bedroom used primarily for sleep and not other things, and a regular relaxing pre-sleep routine to help the body recognise it is time to sleep. ME-friendly exercise and exposure to daylight are said to help sleep - exposure to bright lighting, tvs and phone/computer screens before bedtime can hinder sleep. Avoiding heavy or stimulating foods/drinks close to bedtime is recommended - but PWME have sometimes been advised to eat a little something before bed. A habit of sleeping, and getting up, earlier rather than later is frequently advised. It is claimed that an effective way of establishing a regular sleep routine is to wake at the same time every morning - the appropriate going to bed time then hopefully naturally falls into place.
All the evidence gathered for MEMap suggests that diet and nutrition is where the strong feelings or experience of PWME often conflict with the advice of medical professionals and 'proven science' about ME. We will often have a fairly clear experience about the effects of some foods, but frequently be advised that a healthy balanced diet is all we should aim for. When clinicians say this it is often likely that what they actually mean is that a positive stress and worry free attitude towards food will offer us more benefit than avoiding certain food groups. On occasion that may be true, but avoiding foods shown to make us worse AND simultaneously approaching food in a happy low-stress way DOES offer us the best of both worlds. Different rules surely apply where various foods are avoided or unusual diets are followed, and we have NO direct evidence that they make us feel better or continue to help us after an initial boost. ME can intuitively feel like being poisoned by something in our lives: it is entirely instinctive to research possible toxins and avoid them. But this can sometimes cause anxiety, financial pressures, nutritional deficiencies and increasing removal from the mainstream of life. A good ME detective is probably invaluable here (see below). ME recoverers do frequently mention nutritional pathways towards health. They also mention a lot of nutritional false leads.
Fortunately some fairly universal dietary truths do exist. A well-balanced low GI diet that limits stimulants, alcohol, sugary foods and refined carbohydrates is widely reckoned to be an appropriate response to the boom and bust nature of ME. MeMap's favourite NHS ME dietician says breakfast is a crucial meal and nuts are a good choice. Smaller regular meals may balance energy for some. And food is best when we enjoy it and have an easy relationship with it - the same dietician says there is research evidence that 20g of dark chocolate earlier in the day is good for ME...
Activity management is covered below.
'ME buddy' illustrative example
Issue. I seem have an autopilot lifestyle that I naturally fall into. I guess because it is what feels good when so much feels wrong and difficult : it's my own way of being. Trouble is, it really goes against the resting, relaxation, sleep timings and diet I've been advised to follow. What's more, that advice does seem to work.
Reframe. Obviously my autopilot ways are rewarding and attractive in a short term way. Need to build similar immediate and short term rewards into the ME friendly routines. IE: I love early morning and breakfast radio, plan: go to bed early, make legendary breakfasts to enjoy with the radio. Buy amazing essential oils and use oil burner during rests.
"Patience is key. Putting good building blocks in place and leaving them there." "Food had to feed my soul - I bought good healthy things, and enjoyed preparing and freezing lovely food so I could relish it at more difficult times." "If I could wave a magic wand for my patients I would give them good sleeping patterns."
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, PWME 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.
'ME buddy' illustrative example
Issue. Resting has always seemed boring, and I always want to get the things I have to get done finished before starting rest or pleasure. Often feeling rubbish feels so ingrained that I can't sense how rest will help. So I keep going: at the time feeling worse doesn't seem like it will make that much difference.
Reframe. It is a beautiful thing getting the balance right. Message to self: giving deep rest to my body, mind and soul, and mixing that with small activities and exercise that energises not depletes me is a lovely recipe. The price is organisisation, what it buys are activities that are at least a bit pleasurable, sweet deep rests, and gradually improving stamina.
"Don't push through symptoms." "Don't feel bad about rest, don't let anyone get in the way of you and the sofa." "Setting goals is important. People say isn't that putting pressure on me? Setting goals is not about pressure. It's about focus."
A good number of PWME have, understandably, described feeling 'stuck' - stuck in body, or mind, or stuck in life itself. Even worse, the trauma of illness can easily lead to a genuine sense of feeling 'frozen'. Alleviating this stuckness should naturally mean improved wellbeing. But additionally there is a group of ME recoverers for whom a central thread in their recovery could be characterised as taking physical steps to breathe new life into body and mind - to, perhaps, add some blood, oxygen, 'chi' or 'flow' where previously things were stuck. It might be said they reclaimed their bodies from illness.
Sometimes this has involved ongoing commitment to mind body exercise regimes like yoga, qigong, tai chi or Alexander technique. If there is a common theme or process here, it appears to be a sense of these recoverers building wellness in themselves which naturally generates a continuing enthusiasm (often a passion) for building more. Some of these regimes can be pursued very gently and imply no increase in exercise levels.
The gentle stretching that is widely recommended as appropriate exercise for ME seems to be the natural place for PWME to plug into the process just outlined. ME can be a very passive, constricted experience: 'things we should resist doing', 'things we must do to get better'. Replacing that somewhat dull 'gentle stretching' with a joyous goal of reclaiming our bodies form stuckness by stretching and breathing in new life seems a positive approach to replicating the pathway of these ME recoverers.
Yoga seems to be the most straightforward choice to illustrate this, but 'other brands are available'. Regular experience of even a few moments of vitality can be a 'reconnect' to a type of wellness long forgotten with ME. What might 'vitality for ME with yoga' be? Perhaps it starts with adopting and simply staying with appropriate yoga postures, rather than attempting any increase in activity. Next level: the stretch which is just a tiny bit more than any movement or posture you usually achieve.
Sometimes a regime like yoga will feel exactly the wrong thing for stuckness - something looser, freer, without format, more expressive can suit better. MeMap has frequently witnessed a shaking out of the body exercise before qigong classes. Attendees just shake out, loosen, stretch out any part the body or mind that needs freeing in whatever way it seems to want. A few sounds or groans are added too to let out anything being held in.
Sensations of stuck breathing are commonly reported by PWME. The above activities should naturally tend to unstick breathing. For those for whom activity is unrealistic, attempts to lie or sit in positions where the arms, shoulders and chest are more opened (or naturally stretched) out, might help any sense of the breath being stuck.
Everything written above perhaps equally applies in a slightly different scenario. PWME have described becoming somewhat divorced from their own bodies. If our ill body is not giving us what we need of it, it can naturally follow that we return the compliment in some way by ceasing to give the body what it needs from us. So, to paraphrase, instead of waking in the morning and thinking, 'How will I cherish my body today? What does it need?' We may instead disappointedly rather ignore, and disconnect from, it. Most of the words written above for 'Unsticking the stuck' would seem to offer a natural way to re-engage with the body.
'ME buddy' illustrative example
Issue. Sometimes I am completely drained. Other times I'm not totally flattened but I feel I'm in a grey zone. Everything in mind and body is functioning very listlessly. I feel horrible about myself. Days drift by.
Reframe.This grey zone is stuckness! I do have SOME energy. Using it to blow some life and vitality into me and blow out the grey stuckness might actually boost, not use up, my energy. Anti-stuckness plan: breathe in oxygen to every part of me, do my 'grey zone' exercises, connect to my abundant flowing, flowing health visualisation.
"Gentle yoga helped me refind my body again. I used to love the teacher I had. Then something awoke in my body, and I realised that the yoga was the way to make everything in me begin to wake up. Once I relished finding this nice energy a teacher was not that important." "Try and get out of your head and into your body."
People with ME usually report the stuckness described above at a later, chronic stage of their illness. Earlier, often before ME or its full implications have been acknowledged, other types of phrases seem to be commonly used by PWME. 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.
'ME buddy' illustrative example
Issue. For some time it has taken a huge effort to keep going. It has often been a desperate struggle fuelled with a lot of coffee. But I have a lot of responsibilities on my shoulders, and giving any of them up to lighten the load would have difficult consequences. I just try to hold on and keep ploughing forward.
Reframe. It is certainly true that I would cherish the space to take care of myself, switch off the overdrive and completely let go. And I really need this. The sacrifices that would need are significant. But there is no real choice: not only do I cherish some space for myself - if I don't make the difficult adjustments to create it, the strain on my health may start making my choices for me.
"You've got to make your life as easy and stress free as possible. Where people get stuck is when they carry on, with whatever ounce of energy they have they feel 'I've got to use this energy today and do this.' You've got to go with your body."
Pacing - careful balancing of rest and activity - seems to be the approach to ME which provides the most amiable meeting point between many NHS practitioners and those critical of NHS provision. MEMap is duty bound to recommend guidance from the most imaginative sensitive practitioner available. However... sticking to activity and rest plans can feel like dull work: the best strategy is the one we stick with, not the theoretically ideal one we give up on. So a suggestion for pacing positively:-
Some PWME can describe a relative sense of feeling ok compared to their more unwell moments. Even if this is merely a less painful, more relaxed, form of tiredness. The idea of positive pacing is to actively seek to keep a connection to the best sense of 'ok' we normally achieve. The reward for planning the day well then becomes getting used to feeling our own version of 'ok'. Once we begin to lose this connection to the better end of our scale, positive pacing dictates that we act to take care of ourselves, or rest, so we don't lose the thread we are trying to keep. For some it seems that a positive commitment to not letting the ok drain out of their day increasingly reveals traffic lights of red or amber. If these lights are not passed, and the appropriate action for our own individual circumstances is taken, we can begin to keep nicely in touch with a more continuous thread of some degree of okayness.
'ME buddy' illustrative example
Issue. I have tried to keep to activity charts. They might be good for me but they corrode my soul. A more fluid approach to pacing gives me too much chance to ignore boundaries I need to see.
Reframe. Once I have been awake for about 15 minutes in the morning, there is a small light shining inside my brain and some traces of lightness in my body. I want to keep a continuous thread of these nice feelings through the day. Once I can feel them fading I will create a stop or a rest in the day. When doing activity I will take my thread with me. The time to stop activity is when the thread weakens.
"Crazy as it sounds, being determined to enjoy life, and even enjoy ME, helped me. I made my rests a precious part of the day, and cherished them. Sometimes they were blissful. I also DEMANDED that my activities feel a bit enjoyable. Once they became a grind I usually thought, 'mmm a nice rest is called for!'
Quite a few ME recoverers clearly think that managing illness was a skill they got better and better at until good results came more readily. It seems sensible to take the leap to try to distil this wisdom into a checklist of what might be 'ideal skills' (beyond the more obvious like knowing when to rest and shifting the stress-relaxation axis towards relaxation):-
A governing principle or skill seems to be flexibility and adaptability. An 'everything is up for grabs' attitude helps, where any changes ME seems to demand are routinely embraced as enthusiastically as possible. Sometimes this involves acceptance of illness and the new circumstances it brings. Sometimes, absolutely paradoxically, it involves a refusal to accept that no way forward exists. That's flexibility in its deepest sense!
For many, ME seems to be a wake-up call to pay very careful attention to looking after themselves. It's often quite a complex wake-up call: ME recoverers sometimes describe taking some time to hear it fully - hearing the messages earlier rather than later naturally helps. Messages frequently mentioned include: simply listening to our 'inner voice'; being easy on, and kind to, ourselves; turning down the volume switch on the demands the outside world and other people place on us.
Similarly, care from other people is a crucial component that allows PWME to achieve the rest they need and focus on recovery. Do remind the DWP of this at any assessment! Communicating in clear, direct terms what we need from other people is a difficult but necessary skill. Getting practical measures in place so that life with ME is doable is another necessary skill.
Timing is a key ME skill. At some points PWME can experience the most profound depletion. At these points the simple aim of finding deep physical, mental and emotional rest may need to be the sole aim. Planning recovery can feel, and be, senseless when desperate fatigue is present. First base with ME is the ability to feel somewhat rested. At other times the chronic dull slog of grotty illness may be the prevailing experience - recognition that the time may be right for a change of emphasis, and acquisition of tools designed to help 'break-out', are part of a good skill set.
For some, but absolutely not all, getting caught in a difficult 'loop' may be an issue:-
+ If a stressful lifestyle helped cause ME, living with illness will likely add stress which can exacerbate the original stress.
+ Many emotional challenges that existed entirely independently of ME may similarly be pushed beyond tolerable levels by the impact of a new illness.
+ An uncomfortable experience of an ill body can increasingly push people to focus outside of themselves and distract themselves from discomfort. This may involve using stimulants or other pain relievers, and tendency to develop a buzzy, adrenalised, wired kind of energy of the kind PWME often know so well. This masking of what the body is 'organically' experiencing can create a loop taking us further and further away from ourselves and the underlying issues which need addressing and balancing.
There seem to be no easy solutions for escaping these loops. But a key ME recovery skill seems to involve spotting any loop we may inhabit and being mindful that 'changing track' in our lives might be an aspiration that could deliver real rewards.
Once anyone has any life altering illness, there are psychological consequences. Being ill simply just adds issues of an emotional dimension - even for those for whom the CAUSE of ME involved no meaningfully psychological dimensions. Recognition and acceptance of any emotional needs we are experiencing is a key skill. This acceptance has allowed many to find an appropriate gateway to expert input necessary to help prevent the stress of preventable suffering adding to the burden of having ME.
ME recoverers often talk of KNOWING a strategy would help, but literally years passing before they genuinely got to the stage of DOING what was needed to get that strategy in place. The skill of doing quite simple or obvious things is often more useful than the one of acquiring complex knowledge.
Some knowledge though is critical - fact: people do recover from ME. Believing WE can, and will, offers us crucial direction in the quest for recovery.
A good ME detective is a key part of any skill set designed to seek recovery in the appropriate places while preserving the bank balance. See next category.
'ME buddy' illustrative example
Issue. I get so lost and tired and overwhelmed. It becomes really hard to see how I am going to make progress when I just cannot feel the possibility of it in my bones. I am frustrated, and anxious about the future.
Reframe. Need to remind myself that many many others have walked the path to recovery. Being kind to myself involves realising that I don't need to reinvent the wheel - instead genuinely ponder their real wisdom. Eg:- I want to be well, anything that needs to change to achieve that, will be. The stress described in the Frame is clearly imposing greater burden when recovery inevitably needs stress to decrease. If a goal of stressless living is one of the things that needs to change, that's what will happen. Need to talk to the family about that, get them to help me follow the action plan for skillfully outmanoeuvring ME.
"Accept where you are, and that the next miracle cure is not around the corner." "Avoid the stuff that causes the symptoms and the stress!" "Don't give up. Keep trying, there is something that will work for you. Listen to those of us who have come out the other side." "Really go with everything that works for you at the same time - give yourself 6 months".
An ME detective should be just like your favourite tv detective: intuitive, logical, open-minded, sceptical, rigorous in pursuit of likely suspects, quick to spot false leads. ME recoverers often report spending huge sums, with the majority of it being wasted. Perhaps we are educated to be instinctively readily convinced by things written in a book or (to a lesser extent) on the internet: it is so easy to think 'that sounds like me' and spend (often in desperation) a fortune on the ME 'cure' suggested. Such self-diagnosis can also add new things to stress or worry about. So the first task of ME detective is to be extremely vigilant about checking and corroborating the quality of all leads.
At the other end of the scale, some PWME clearly experience 'treatment fatigue': spending so much energy and money without good results that their enthusiasm for ME detective work diminishes. Unfortunately the much-repeated mantra that with ME 'you have to be your own detective' probably holds. Maintaining curiosity about what was happening to them, and how the progress achieved by others related to that, appears to be a mindset typical of ME recoverers. Most detectives are wise old heads: attempting to mix a hard-nosed, nobody's fool kind of approach with genuine curiosity and an openness to all promising evidence would seem to result in an ME detective best equipped to track down recovery.
At certain stages of ME, PWME can be very sensitive to different kinds of environmental factors or pollutants. Obvious environmental stressors might often have more subtle 'sibling' stressors which need quite forensic investigation.
Many PWME report that sometimes the advice of gps or other well qualified medical practitioners conflicts with their instincts about their illness. Here ME detective needs to weigh up the facts extremely wisely. Whenever we decide against following the practitioner's advice, it is sound policy to tell them so the ongoing relationship is based on full information: our detective work is only good detective work if it stands up to the scrutiny of others.
'ME buddy' illustrative example
Issue. I go through 2 cycles with ME. A period of reading a lot about theories which explain the cause of ME and supplements or protocols I should try - and giving them a go. Then periods of being fed up with the money I have spent, and feeling that nothing has ever worked all that much.
Reframe. My ME detective has been a bit guilty of making quite emotional decisions. Those cycles are mostly about belief that I can get better very quickly, then an equally emotional absence of belief that I can change things. Meanwhile the actual facts have remained the same. I need to build a fuller picture of the evidence:- What is happening, very precisely, to me? What happened with the recoverers whose experience of illness was like mine?
"I realized that there were so many who had healed from CFS, each in his or her own unique way. I needed to keep following what I was drawn to on my own healing journey, see each method of healing as part of a toolset and part of a whole that was moving me forward. I learned to trust my ability to do things my own way, rather than by rigid prescription."