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Config part 1: Journey into ME
This page of the Config Journey invites you to take an intuitive journey into what your experience of ME feels like to see if there are any personal wisdoms that may be worth getting into your day more regularly.
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.
Feeling ill, and thinking those feelings are a necessary consequence of ME, can be disempowering and overwhelming. A symptoms based approach to ME can help. NHS treatment for ME often advises against 'symptom checking' because repeated focus or worry can increase the sensation of the symptom. Absolutely. But a more occasional, positive, proactive 'be your own detective' analysis of our own symptoms can offer profound benefits:-
First while a diagnosis of ME/CFS can at first be a relief (a name for worrying or confusing illness), ME can ultimately feel too big and overwhelming to manage. Breaking it down into a collection of fundamental symptoms which match our experience of feeling ill gives us manageable chunks which may be easier to find solutions for. With ME, symptoms vary - no one symptom is inevitable or beyond remedy. In fact the label 'ME' can be positively unhelpful in stopping us focussing on small parts of body or mind we can individually nourish and heal.
Second, diagnoses of ME/CFS are handed out without painstaking diagnostic testing. It is perfectly possible that individual ailments you experience are not an intrinsic part or consequence of ME, but ailments which can be effectively addressed in isolation. ME seems to have a variety of causes or stressors: PWME have reported that what they imagined were symptoms of ME ultimately seemed to be stress factors which CAUSED their illness in the first place (for example, physical pain).
Third, some approaches to ME which claim great success, teach patients to see symptoms as fairly friendly signs that the body is sending to get us to listen to our own personal needs. To greater or lesser extents this practice is often encouraged more widely in ME - for example interpretation of ME as a 'wake up call' to look deeply at our lifestyle and the demands upon ourselves is advice much repeated. There would appear to be little harm in playing with the idea that if ME were trying to offer us helpful messages about things we need to address and changes we need to make, what, for you, would those messages most likely be? It may be easier to apply this 'in the moment' when experiencing a symptom: if the symptom does have a message for you, what could it be? Is there a pattern about when, where, and in which circumstances this symptom becomes more troublesome?
'ME buddy' illustrative example
Issue. People ask what ME is like. I tell them that it is like feeling ill all over. Usually they just don't get it. Most of the time the full weight of what I am dealing with is so great that taking it on feels like throwing a rock at a tank.
Reframe. It would be really useful to start a complete description of what I experience in bite-sized pieces that I can have a dialogue with one by one. I feel flattened: no oxygen is getting into me, no blood is circulating. The pain is actually 2 quite specific types of pain in my neck and in my legs. My brain feels really foggy - in fact, more specifically, it feels worked to mush (perhaps there is a link: no oxygen here either)...
"I asked my symptoms, what stress do they suggest is present? What lifestyle or personal changes are they suggesting that maybe I should make?"
Thoughts about how this could serve you
Some ME recoverers have reported gaining genuine insight into their illness by finding the right moment and place to take various kinds of meditational journeys or curious investigation into what exactly it is they experience. There seems to be an invaluable process here that can ultimately lead to very fruitful ways forward. A couple of examples follow.
Amongst their difficult experience of illness, some PWME 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. For now just note your feelgood moments in a Reframe. Later you can journey into the wisdom they may hold and examine the issues the feelgood takes forward in the matching Frame.
'ME buddy' illustrative example
Issue. What happens in the bath? It is warm - will significantly more warmth throughout the day do a lot for me? I let go and let everything wash over me. Would a looser, 'lying in the bath' type of mindset work for me? It could be that nature itself is an organically healing force. It is also possible that the way I subjectively experience nature explains benefits I receive. How can I replicate the experience of nature more frequently? When I experience nature, which negative things get 'pushed out' by its positive impact?
Reframe. Things that often make me feel a bit ok (the Frame analyses the underlying issues that may explain this):- A bath is such a nice relief. Nature seems like it really nurtures and heals.
"When summer came I always felt so much more hopeful. In winter recovery mostly seemed impossible. That would be my mood right? Wrong! I was not cold, but too cold for my needs. My muscles and body needed great warmth to feel even slightly ok. Warmth meant hope, simply upping the heating to max was a real upturn."
Tiredness can take different forms. Positive engagement to get to intimately know its ebbs and flows can be a base for progress. For example, many PWME feel genuinely (often partly) replenished by short rests or sleeps which can feel more nourishing than longer night time sleeping. A handy trick is to tune into how your fatigue feels before these little rests. And then after a rest, check in with how, exactly, the sense of replenishment feels different to the fatigue. Where in the body does the replenishment feel greatest? Is it the switching off that really works for you? Or the being horizontal? Or the losing consciousness? If rest works because it gives you a break, what is it giving you a break from? Putting that another way, if you failed to rest and didn't get that break, what, very precisely, would you be continuing to deplete by not resting? Might there be ways other than resting to nourish what is being depleted?
Later in this Config Journey you will be asked to describe how the parts of your body (or brain) that often feel 'ill' would feel if they were completely well. This is just a slightly different version of taking an experiential journey into and around your body to allow it to tell you exactly what it is it would like to be different. What is not rested? How can it find rest? Where do you feel 'ill' or 'not right'? Intuitively or practically, what changes do that ill or not right part of you need?
Feeling our way into the nature of our tiredness may (or may not!) reveal profound personal truths about how we might take better care of ourselves, or where exactly we need might some nourishment and input.
'ME buddy' illustrative example
Issue. Analysis of my resting and fatigue reveals some extraordinary processes. What feels like fairly ordinary gentle living seems to exhaust me so profoundly. Keeping going rather than resting feels very horrible and messy. But the rest I sometimes take instead seems to reverse that process in a dramatic way.
Reframe. By understanding my tiredness better, the scales are finally tipping in my favour. It seems short rest actually does a lot for a fatigue process that will otherwise be very debilitating and out of control: time spent on a short rest is a hugely valuable use of time. For me a short rest offers 2 things. First it is a stop. An end to the process of energy leaving me. Second losing consciousness flicks a definite switch. Even a 10 minute sleep softens a harsh over-strained sensation inside my head. My tiredness feels so harsh, but softening it by sleeping is surprisingly effective. Can I find ways to minimise that harshness and add that softening effect while I am NOT actually resting?
"It was important to learn that once I had not rested for 3 hours, the walk that my body could do was not a walk my brain could do. Even in a relaxing park. My brain and the head it is in needed to regularly flop, whatever my body was saying it could do. Total brain and head flop was the crucial rest I needed."