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Config part 1: Manage the day
This page of the Config Journey asks you to look only at today, not the wider timescales of a long term illness like ME. What can you do today that might move things forward?
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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.
A lot of ME Recoverers and their practitioners highlight the importance of lifestyle changes in dignifying the experience of ME and finding recovery. Decisions of this kind are one thing. Getting them to play out in the realities of a normal day against other competing demands is another thing entirely. Many PWME speak of being knocked off course, getting side-tracked from what they feel is good management of their illness. Various ME recoverers have mentioned feeling that, in retrospect, they 'knew' what would help them recover long before they took definitive action.
One strategy is a hard and fast rule that ME is priority number one. So that complicated stressful decisions about where we 'should' be directing our attention and how much we 'should' be pleasing others are replaced by a simple decision we made earlier: ME first. This can be a very straightforward, pragmatic habit. Alternatively a deeper habit of kind-to-self, self-nurture can be built into the day. With this, the morning may begin with a positive affirmation to set the day on a path of treating oneself generously and kindly. Then regularly ask through the day, 'What's the most healing thing for me now?'
Is it selfish or horribly dull to go through life with ME or being kind to ourselves as our no. 1 priority? Not at all. Getting better is surely the best thing we can do for others, and the route to an exciting future. In situations or activities where we have an established record of being able to manage, it is good practice to switch off our 'ME monitor' and simply relax. In other situations an assertive, pragmatic, non-anxiety inducing habit of checking in to establish the ME-friendly course of action is good practice.
'ME buddy' illustrative example
Issue. There are a lot of things I want to do in a day. There are a lot of things other people want me to do. It feels like a 3 sided tug of war between those demands and what my ME is telling me it needs. I easily get switched off from what my health needs when louder voices or more appealing options compete for my time.
Reframe. When I sit down and survey the state my life gets into, my decision-making is clear. ME is my priority. Making wholesome balanced adjustments in my life feels good in the way only something can when it is 'right'. Making ME my priority number one feels inconvenient for odd moments, but in the longer view all the better things in my life fall into place best when I stick to my 'ME first' mantra.
"After a few years being ill there was a big wake up call, things were not going to change for me if I only gave half my attention to ME. Almost from that moment on, ME became the centre of the day. Things that did not work for my illness, the demands of other people and ways I was used to doing things all got trumped by a really committed approach to living in a ME-friendly way."
The MeMap coffers would be consideraby less empty if they got a pound for all the PWME witnessed retrospectively 'forging' activity charts for their NHS practitioner so they matched the plans 'agreed upon'... This illustrates the trend (in life as well as ME) for what actually happens during any day to diverge significantly from the plan, strategy or decision intended to guide that day. It can be oddly illuminating to consider our abstract plans to tackle ME and the reality of each day the sun rises as 2 quite separate things. And ask, what actually happened today? Did the 2 broadly match? If not, does the plan need modifying, made more doable? Or do I need to check in with the day more often to stay on the track I decided was best?
Often days have a turning point: the day goes from being sufficiently ok to not being ok. Intervening and catching the day before it hits the ground is a great skill - one easily learned by getting into the habit of looking back over any day, spotting the turning points and using MEMap to describe the difference between how catching the day feels (a Reframe) and how the consequences of not catching it feel (a Frame).
'ME buddy' illustrative example
Issue. I am very familiar with a fairly specific dulled, strained, uncomfortable feeling in my brain. Once I clearly feel that on any day, my energy, ability to think and emotional balance are finished. Sometimes I don't or can't take action to switch out of the day. The rest of that day can feel ghastly and out of control. My bodily fatigue is often intense in days that follow. Today: at 6pm I was out and unable to rest. Day planned wrong!
Reframe. Once that horrible familiar brain state starts growing, prompt action to get horizontal stops it in its tracks and rebuilds energy pretty effectively. The part of the day following that rest can feel quite a nice experience. This success not only works on the day, but really drives my long term recovery.
"What really helped was, before getting up every morning I made a mental list of what happened during the day before that was not helpful for me. Then I made a positive commitment to avoid the same happening during the day ahead. A brilliant way for me to build."
If PWME have a limited pool of energy, then strategies that conserve it, or act to intervene when things drain energy, naturally help. In addition to 'pacing' our energy, it can be incredibly useful to develop intuitive tricks which capture our imagination sufficiently to make navigating the day in an energy efficient way feel doable and attractive.
Lateral or metaphorical thinking may help us find an intuitive process which sits in the front of our consciousness effectively enough to achieve this. Just for example:-
Particularly suitable for mental fatigue, a helium balloon metaphor: imagine your brain as a balloon, and your good mental energy as its precious gas that you want to nourish and keep. Anything that gives you energy, like directing a deep gulp of breath towards your brain, helps you float more. Anything that is too demanding which causes energy to escape from your brain, makes you float less. A conscious sense of keeping enough helium to remain buoyant, and never expending your gas apart from in a good cause, can 'centre' energy nicely.
A physics metaphor: scientists say that the energy in the universe does not disappear, it just converts into another form. It can be useful to ask 'if my body IS producing energy (and it may not be!) where is it being used up, or what is it converting into?'
An Eastern medicine metaphor: complementary therapies with Eastern roots often characterise illness as blocked energy. It can be useful to ask 'where in my bodymind is the flow of good health being blocked? What in my body, soul or life experience feels like the most obvious thing that would impede a sense that everything can flow?'
As ever with MEMap, the idea here is to foster ways to manage the day which might work for you. If something like the examples above hooks into your way of doing things, great. If not, not...
'ME buddy' illustrative example
Issue. My energy is like an unstable gas. It does not follow gradual steps up and down a scale. Sometimes there is a manic, unbalanced energy, sometimes all my gas fairly suddenly disappears. I use up energy on things like making decisons, and get too wasted to spot that the decision is not worth the energy. A lot of my energy flies out of open windows without me paying much attention to the process.
Reframe. I want to be ecological with my energy. Breathe lovely energy gas into my brain and body, and try to keep it for myself. It will be very zen. I want a sense of flow in my body so the energy can circulate. When things make demands of me, or my interest is drawn to something that needs energy, I will watch the kind of energy I am using very mindfully. Want to check that energy I expend flows out in a gentle balanced way.
"I devised a code for myself that involved pieces of music that would suit the level of fatigue I had that day. The right piece would take me to the threshold where finding a relaxed space became possible."