By Craig Robinson
DATE OF FIRST PUBLICATION - NOVEMBER 2021
[UPDATED MARCH 2022]
In many ways, this page is quite a personal account - an anecdote, you might say. But as my flamboyant Large Sample Statistics' Professor said at the beginning of our first lecture, with his multi-coloured scarf draped around his pinstripe suit, and his long hair covering half of his face:
Now remember you bright young things, we are trying to tell a story here, as best as we can. We will anaylse, scrutinise, and we will use all sorts of clever ideas, ideas that will blow your mind. But never lose sight of the story. It's why we're here. And never forget anecdote - the total sum of all anecdotes is the sum total of all we know [words as recorded by me in my lecture notes]
So, hopefully you will find something here that chimes, but if not,then at least there are 2 amazing YouTubes to listen to near the bottom of the page, a lovely picture of Penny and some life musings.
One of the many difficult things about living with ME, and perhaps the most difficult thing about trying to put in place all the necessary interventions to facilitate recovery, is how to balance all the competing ‘needs’ of life. We do not live in isolation; life happens around us and we cannot ignore it. Money. Housing. Welfare Benefits. Employment Problems. Household Bills. And many more….. these everyday things need attending to….
‘Life gets in the way’
We cannot devote all the brain power, money and time that our illnesses are screaming out for. We have to balance these ‘everyday needs’ against our immediate ‘illness needs’ and do the best we can in the circumstances in which we have landed.
Framework for recovery
It is sometimes overwhelming and, for some, pretty much always overwhelming. In my previous pages, with ideas politely stolen from 40 years of Sarah’s work, I have tried to give broad frameworks of how to try and move forward -
- Catastrophe Theory - why we get into and how we get out of CFS/ME – this page attempts to give a justification of why it is important to move gradually towards an individualised ‘ideal’ treatment protocol and also why deviating from this protocol can sometimes lead to ‘catastrophe’.
- Chaos Theory – and CFS/ME recovery paths - this page attempts to give a model as to why putting in place the foundation stones of recovery and sticking to them is important. A key foundation stone is of course, Pacing.
- Vicious Circles in CFS/ME - this page attempts to show some of the vicious circles that can exist in CFS/ME, and how and why these circles can keep us in that awful place – it also shows how to break these circles
You will notice that I am not very good at naming my pages – Catastrophe, Chaos, Vicious! Maybe these names are not coincidental and perhaps they reflect my early experiences, and sometimes my current experiences, with this disease of diseases. Maybe my subconscious mind was at work. Anyway, this page has a more calming name. I am learning!
I cannot give detailed advice on all the ‘everyday issues’ as listed above, because they will be different for each and every one of us, but I can say that I think we all need a Plan – what I call a ‘mini-Plan’, contained within our overall individual ‘Pacing Rules’ - to deal with each of these everyday issues.
Question – How do you make God Laugh? Answer – Show her your Plan. Question – How do you make God Cry? Answer – Tell her you have no Plan.
So, by way of example, at the lowest point in my illness, I had a mini-Plan with regard to dealing with our Building Society, who required an ‘Income and Expenses’ account every 2 weeks so that they could decide how much we should pay to them each month or else they would repossess our home. My wife, Penny, was bringing up our two children, looking after bedridden me, and working part time, and so the job of producing an ‘Income and Expenses’ account every 2 weeks quite rightly fell to me. So, I allocated 10 minutes of brain power to this task every morning, in bed obviously, – this was my mini-Plan. The mornings were [and still are] my better times, and doing this meant that in 2 weeks, I could produce what was required. My Income and Expense accounts were handwritten and always handed in on time – in one way, I was quite proud of them! I had to adjust this mini-Plan when other unexpected things happened. That kind of planning is what we all have to do in order to ‘deal with life’ and it is TOUGH.
These ‘mini-Plans’ then, form part of the overall individual ‘Pacing Rules’ that each and every one of us is doing.
And it is TOUGHER beyond measure if you don’t have a "Penny". I do understand that, and all I can say is that I try to empathise, and that I am truly humbled in the presence of anyone who faces this illness without the love and care of a partner, or a parent, or a good friend, or someone. I don’t mean to patronise, but I have seen some amazing stories of such heroes ‘making it’, and they really are remarkable people. Equally, I don’t want to spew out toxic positivity – this is a hard journey, very hard, even harder for some, and I cannot change that, but I can try to give people the benefit of my mistakes. All my pages are summaries of my mistakes. And I continue to make those mistakes, only less frequently nowadays.
So far, I have skirted around a key point of this page – this page is also about ‘balancing’ another type of ‘need’, a ‘need’ to which many sufferers (myself included) often attach(ed) too little importance.
This is balancing our emotional needs. I truly believe that we need a mini-Plan, within our overall individual Pacing Rules, to balance our emotional needs.
At this point, I want to qualify things again – there is a very wide variation in the degree of severity of our illness and I have suffered at most levels. I was severe for years – totally bedbound – and I was very severe for about 5 months. I apologise in advance if any of the comments that follow may appear frivolous to some in our community, but I also hope that you may find here something of truth.
Many sufferers ignore their emotional needs, and I think they do this for a multitude of totally understandable reasons:
- some wish to concentrate as much effort as possible on the practical and physical core things for facilitating a recovery, as they see it
- some think that attention to emotional needs might give the impression that they are suffering from a psychological illness and that is a battle they don’t want to fight again and again
- for some, the illness has worn them down to such an extent that they have lost a sense of self-value and so actually don’t think that ‘their’ emotional needs are worth attending to
- some don’t know how to balance these needs and fear tipping themselves into a relapse if they ‘push’ too much on what they see as ‘unnecessary’ things to do – they think ‘I don’t actually have to go for that wheelchair walk in the park’.
- …and many more reasons specific to the individual
I think this ignoring of emotional needs is a big mistake, not only because it ignores that we are all human and that we all need emotional sustenance, but I also think that such ignoring of emotional needs can directly get in the way of a sustained recovery.
The ME Dilemma
So, as an example, consider Diane, a fictitious sufferer, who has been diligently applying her protocol for months and has seen some improvements, to the extent that an opportunity arises where she believes she can go and ‘do’ a pub quiz one night. For ‘pub quiz’ you might insert ‘be wheeled in a wheelchair in the woods for 15 minutes’, ‘doing some artwork, or ‘writing a poem’ or any such ‘activity’(either done with other people or on your own) that you might now be capable of and which in some way satisfies an emotional need. Diane is worried because this type of activity is not within her usual pacing limits, although she knows [to the extent that any of us ever knows!] that she can probably ‘do’ it!
I put ‘do’ in speech marks because I mean ‘do’ in the sense of everything needed to ‘do’ a pub quiz. Getting ready. Doing the journey to the pub. Dealing with all the interactions in the pub, let alone the questions! Coming home. Coping with any physical consequences of having gone to the quiz. All of this needs to be factored in for ‘us’. Normal people have no such considerations! They worry only about the questions and their score!
It is the dilemma that we have all faced so many times – will I set myself back if I do this, but I really WANT to do it.
Put simplistically, it is your HEAD against your HEART.
Many sufferers worry about such activities breaking their individual ‘Pacing Rules’. Pacing is certainly crucial. But we also have to think about ‘pacing our emotional needs’ and including a ‘mini-Plan’ for our emotional needs within our overall ‘Pacing Rules’.
Resolving the ME Dilemma
How to resolve this dilemma?
- First of all, accept that you will sometimes get it wrong! If you don’t want to risk getting it wrong at this time, then don’t risk it! Trust your instinct. But if you do ‘get it wrong’, then look at the Catastrophe Theory page – go back to what was working and be as tight as you can on everything. This will minimise the time to get back to your Baseline.
- Secondly, reflect! Have you used the idea of ‘balancing’ your emotional needs to kid yourself that you can and should do this? This page is not meant to be a ‘get out of jail free’ card for not doing all the things as listed on the Catastrophe, Chaos and Vicious pages!
- Thirdly, just how important is this for you, personally? Really be honest with yourself here! For example, attending my children’s graduations was way up the scale of the importance ladder for me. But on the other hand, I had to be honest with myself about some theatre shows that Penny and I had booked – was it ‘that’ important that I went to see ‘that’ show on ‘that’ night?
If after having accepted the possibility of getting it wrong, and what that means, and after having fully reflected, and assessed the importance of whatever it is to you, you still want to go ahead, then do!
Importance of balancing emotional needs
From my experience, ignoring the need to balance emotional needs within your overall ‘Pacing Rules’ can a big mistake because:
- We are human and part of being human is having and expressing those emotional needs
- Denying those emotional needs can slow your progress in ways that I really don’t understand
- ‘Seeing progress’ is so important in the recovery process, and achieving things like this are important ‘markers’ of that progress
For the severe and very severe sufferer, this may all seem academic in the extreme, and if anyone had opined to me in this way, when I was severe or very severe, they would have been in receipt of a mouthful of expletives and anything that I was capable of throwing at them from my bed, and probably justifiably so. All I will say on that is that I did try, unknowingly at the time, to balance my emotional needs, even when I was severe and very severe [see below], so great is the urge, so great is the human need to do so. During my severe stage, I listened to Radio 4 15-minute plays, recorded on a cassette by Penny, in 2-minute chunks, thereby completing a play in a week. I would do my 10 minutes of the Income and Expenses account and then my 2 minutes of the play, and that was me done for the next 3 hours. But I accept that even this level of activity is not possible for all. It is a very messy illness.
Within that last paragraph is a clue, I think, as to why we must not ignore our emotional needs – I wrote ‘so great is the urge, so great is the human need ’. Emotions and emotional needs are primeval – we cannot ignore them, and we cannot, ultimately, suppress them. Indeed, Oscar Wilde [1854-1900] said -
'I don't want to be at the mercy of my emotions. I want to use them, to enjoy them, and to dominate them.'
Maybe we cannot achieve Oscar Wilde levels of control, in fact maybe that isn’t totally desirable, but expressing emotions and “allowing” them to breath is, I believe, crucial and also, we will have some fun along the way! I don’t mean to be flippant here at all.
Summary and Conclusion
I have never succeeded in expressing this idea adequately! It is one of those things that is better done verbally, with a to-ing and fro-ing of ideas. And this is partly why I have tried to be chatty in my writing style. But here goes as a summary -
- Have mini-Plans within your overall individual Pacing Rules to deal with the 'everyday needs' of life.
- As well as these 'everyday needs' 'mini-Plans', I think balancing your emotional needs must be ‘covered’ by a ‘mini-Plan’ within your overall individual ‘Pacing Rules’. Make time and plan for your emotional needs just as you make time and plan for money matters, and all those other practical ‘everyday needs’. Those money matters and other practical ‘everyday needs’ CANNOT be ignored otherwise disaster quickly ensues and so these needs ‘naturally’ end up within your individual Pacing Rules, but often ‘emotional needs’ are forgotten…
- If after having incorporated such an emotional needs mini-Plan within your overall Pacing Rules, you ever find yourself in an ME Dilemma, try to apply the three steps as outlined above, and hopefully you will make the right choice more often than not.
As you recover, or if you were moderate / mild to begin with, then you probably don't need to be so detailed and pedantic with your mini-Plans, but I think the concept is a good one, and something like it should be a part of any Pacing Rules.
For me balancing emotional needs has been, and remains, utterly crucial to my sustained recovery. I don’t fully understand why this is so important and maybe it isn’t as important to everyone as it has been to me.
But you know what? Something I have learned from the last 28 years of illness is that I will never understand it all, and if something seems to work, and is plausible, then just do it, and let the scientists catch up one day, maybe.
New things spring to mind every time I read this, but I must draw the line somewhere! This is a vast topic, and this article only scratches the surface and gives pointers. The following points, however, deserve inclusion.
Positive emotions, just like all emotions, use energy, lots of energy. I remember feeling utterly exhausted after watching my daughter, Gina, do a song and dance routine for the first time, and equally exhausted when I saw my son, Conor, for the first time, play a game of football. These were joyous occasions - the dark sunglasses covered my tears - but they were also energy sapping.
So, factor in that these emotional needs do require energy - it is a very delicate balancing act between 'having' the experience, and filling that emotional need, and not 'going too far' and exhausting yourself. Practice makes perfect on this one, and if you are like me, you will get it wrong every now and then. Sometimes you may well have to limit your emotional experiences to the 2 minutes of my radio plays, but I truly think that to deny them totally is a mistake.
Indeed for a period of around 5 months, my thankfully short very severe stage, and when my illness dipped even further, I was unable even to listen to my truncated plays, and during this time, I wrote 'poems' in my head, 4 lines at a time. Somehow they stuck and when I was a little better, I wrote them out. I hope you will forgive me this but it does illustrate an important point - one of these poems won a prize at the Hastings Poetry Competition in 1997! Unbeknown to me, Penny had submitted it. And therein lies a whole new topic only touched upon here - the importance of 'achieving' something - this can take many forms, and sometimes the most gentle of achievements can be as rewarding as any. These achievements can be personal, maybe unknown to anyone else, they can be transitory or permanent, they can be tangible or not. Anything that gives a sense of having "done something". There is so much more to write on this topic, but I hope you get the gist.
I think another factor with positive emotions, and I haven't felt this so much with negative emotions, is that sometimes you get a burst of false energy [maybe adrenalin?] and because you are having a good time, engaging with life again, you want to carry on. Try to learn to recognise these 'surges' of false energy, and do try to temper them. It is SO hard because we have been denied for so long that it seems cruel to cut short a good time, when you are having one. When this happens to me, I have trained my brain to play the Queen song - "Don't Stop Me Now!" in my head (because that is exactly what it feels like!) and perversely this is my sign to stop!
In fact, I can hear that Queen track playing now! You see I enjoy writing, but I must now wrap things up otherwise I will be running on false energy.
We will all experience negative emotions and sometimes very powerful negative emotions, and sometimes, sadly, quite frequently. I have found that I must leave space to deal with such negative emotions – if I let them fester, then this always impacts very badly on my health. As with positive emotions, negative emotions 'like to hang around'. Try not to let this happen - deal with them, and let them go. Easier said than done. Maybe I am stating the ‘bleedin obvious’ here!
Fawlty Towers’ fans can reminisce here - Fawlty Towers: The bleedin' obvious
But I have found that sometimes the ‘bleedin’ obvious’ gets forgotten! So, leave space for dealing with these kinds of emotions too.
As Mister Tom said of the evacuee boy, William "Willie" Beech, in the truly wonderful film adaptation of the book ‘Goodnight, Mister Tom’ by Michelle Magorian [1947 - ] –
“Maybe he needs to cry. You let it out boy.”
literary : luck that takes the form of finding valuable or pleasant things that are not looked for]
During this illness, I have "noticed" things more. For example, I "see" nature more keenly than before. I think maybe this is partly because I was forced to "slow down" and so things which I was almost oblivious to before, because of my general "rushing", suddenly "came into view". I actually "watch" sunrises and sunsets these days. I "really" hear the sounds of the wind in the trees and the rustling of leaves ["psithurism"]. Perhaps, this new-found awareness might come from a re-evaluation of life, caused by the illness. I am a different person from the pre-ME Craig! I am not the man who gave a 3 hour lecture on "Directors' Responsibilities" to all one hundred of the FTSE 100 Finance Directors at Canary Wharf, with no notes! I don't want to be that man again, but I am glad that I was him once.
Here I have to say the following - I would much rather that I had never had this illness. This increased awareness, or any other "changes" are NOT adequate compensation for all that this illness has stolen from me.
But I am where I am and so I have taken the decision to try and make the best of that, whilst all the time trying to recover as much functionality as possible. A fellow sufferer at a local support group once said to me that "ME is like being shipwrecked from an amazing cruiseliner, where there were parties every night, theatre and cinema shows, and delicious food, to a desert island in the middle of nowhere, where there is nothing to do except survive". You have to "devise" a new way of living.
My co-admin of the Dr Myhill Facebook Groups, Katie Twinn, once told me that after a long period of being bedridden and having not been oustide the four walls of her bedroom, she got "outside". She told me that what absolutely amazed her was the vastness of the sky. I thought at the time, and still do now, what a beautifully apt word to use - vastness. I also felt this when I finally got out of my room after years. I still feel that vastness whenever I look at the sky or at a seaside horizon.
Anyway, on to the "story". You see, to the normal people "out there", this is not much of a story, but to me at the time, it was very significant.
One day I was lying in my bed [no surprises there!] and I caught sight of a bee making a hole in the mortar between the bricks just outside our bedroom window. This went on for a few days, and 'Erica' [I named her after Monty Python's 'Eric the Half A Bee'!] continued with her busying, coming and going. I had never seen a bee do this before. There was no internet in those days and so I couldn't "look it up". I thought to myself at the time that I would go to the library one day and find out about this lonesome bee! Actually I didn't need to wait for that day! A week later, I was listening to Radio 4 and there was a 30 minute piece on "The Mason Bee", and suddenly all was illuminated! See here for details on the Mason Bee
So, what's the point of this story? It is one of those "ME memories" that has stuck with me. Perhaps something about "me waiting and things coming to me", rather than "me having to go looking"?
I guess that's it - sometimes, indeed often, emotional needs 'come to you', entirely outside of any 'mini-Plan'. You can't plan for everything - sometimes, things just happen. Penny always says that "our best times" were unplanned and "just happened"! She calls them "Penny-Craigisms".
The 'mini-Plan' is a back up [a kind of insurance policy] to ensure that you do 'get' your emotional needs but sometimes they "come to you", and for me, once, in 1994, they came in the form of a Mason Bee, called Erica.
- Catastrophe Theory - why we get into and how we get out of CFS/ME
- Chaos Theory – and CFS/ME recovery paths
- Vicious Circles in CFS/ME
You can see my attempt at an overview of the whole protocol on this page:
- Fawlty Towers: The bleedin' obvious
- Queen song - "Don't Stop Me Now!"
- Wikipedia Article on the Mason Bee
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