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The kids busted out of homeschool and I learned that I still boom and bust!

Am I really using a sinusoidal wave to show Boom and Bust? ‘Cos – it’s a bit of a tangent no?

When Coronavirus/Covid-19 hit us in March 2020 – I felt like I had been in training for it as I’d been in a mini lockdown of my own for the last few years.  However my children had a different experience. 

They stopped going to school. 

School was where they learned, they made things, they interacted with others and they played.  It was sudden.  The news had mentioned the possibility of schools shutting.  But when the Government announced it – we had little time to plan and prepare for it.  

One moment our children were happy in their normal world but the next moment things had changed.  They were at home all day and homeschooling began. We started homeschool with lots of enthusiasm. Like school, we had a routine – Yoga/PE, schoolwork, lunch, afternoon project work, etc.  And lots of snacks in between. Thank goodness we had a number of devices at home (including a printer) to help.

We were all pretty exhausted and frustrated with each other at the end of day.

Trying to maintain a routine/structure without going to a different environment is hard.   Trying to maintain that routine and meet my self-set expectations quickly took its toll.  Even though I was spending less physical energy – the mental and emotional energy spend exhausted me. Eventually we gave up on homeschooling – mainly because of my ME/CFS. We had tried. I had so wanted to make it work but I crashed.     

I wonder whether I would have given up quite so quickly if I wasn’t ill – the answer is sadly no.  I probably would have kept going (even if it exhausted me) and to the detriment of all of our mental health.  However thankfully my ME/CFS journey enabled me to let go a bit earlier than I would have before.  I still need to let go more – but it’s a start.  I have so much respect for those who are able to recognise the need to change their expectations for the sake of their mental health – if only I was so sage.

In September – my children returned to school. What happened when they returned to “normal”?

Well the kids settled quickly back into the school routine. They were excited. They adapted – albeit they were tired and very emotional. As others say – children are resilient.  

 It made me wonder what would happen if my illness went away and I could return to an old “normal”.  

Would I be commuting again, going from meetings to meetings whilst juggling people management, facilitating workshops, managing stakeholders, doing book bag admin when I got home, doing the online shop on the commute?

Probably not.

I’m starting to accept that there’s no returning to my old “normal” – and maybe it’s a cloud with a silver lining. But I still do need to recognise and accept that I need to change some of my ways as I continue to adapt to my new normal.

If you look at what I did with home schooling – an initial spur of energetic enthusiasm, setting a routine which was unrealistic for my personal energy resources, beating myself up for my self-imposed expectations, organising regular Zoom calls for my children and their friends – and then crashing.  A typical Boom and Bust pattern!  

So it seems I still need to learn about myself and how to manage my illness to stop the Boom and Bust.

  • Don’t be too hard on yourself with those self-set high expectations – lower them!
  • Check those expectations to realise what you may not be consciously aware of – talk with someone to check in
  • Go slow – whatever you’ve planned – cut it by half
  • A new process or routine which you’ve planned and decided will be a good way forwards will not solve everything – it may cover all the bases you can think of but you will not have fully considered your personal resources sensibly
  • Yes – processes and systems do not solve everything (!) 
  • We are resilient and adapt
  • Lowering expectations isn’t giving up or admitting you’re not good enough – it’s adapting to circumstances 
  • Re-read this as your brain will automatically dismiss this as soft mambo jumbo even though you’ve got a case study above to refer to
  • Keep working on Boom and Bust!

And what have I learned from my children during lockdown

  • It’s nice to get out of the house and be in a different environment interacting with different people
  • I need to learn
  • I need to produce things
  • I need to interact with others
  • I need to play

Just like my kids do. 

Even if there’s an illness out there that hinders me.

It’s SOH , CAHallenging and TOA – ough (oh dear!!! remember trignometry?!)
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Pacing – getting into first gear

So did you write down a list of activities? Nah – you didn’t right because you’re just reading this blog to research about Pacing and how to Pace?! ( I’ve been there).

However if you have a list of your activities – then we can start to move into first gear and categorise your activities into buckets. I chose buckets that were High, Medium and Low activities.

Activites into Bucket
Which bucket does which activity go?

But before that a key step is to define what your High, Medium and Low means. Your High, Medium and Low might be different to mine. 

From my experience – I’ve found it useful to define High as two of the following and Medium as one of the following. And Low as minimising energy spend where possible.

  • Physical energy
  • Cognitive energy
  • Emotional energy

And importantly keep the Rest and Low categories separate. This is important – because if you’ve got ME/CFS then it’s also likely you need to re-train yourself to consider what Rest is. Real Rest.  

And well you know I can’t leave behind my old corporate self – so yes – I “ragged” them. Yes – I’ve made them Red, Amber and Green – because who doesn’t love a bit of RAG’ging.

CategoryColourExample Activities
HighRedAn activity that requires both cognitive and physical energy
E.g. walking back from the school run, looking after/supervising the kids outside, taking a shower, getting up in the morning – dressed, brushing my teeth, making breakfast, etc.
MediumAmberAn activity that requires either just cognitive or physical energy
E.g. Doing Tai-Chi with a focus on mindfulness, writing a blog as I’m sat/lying down and mainly thinking and typing, watching a TV/film which engages me emotionally, reading a book, gardening if it’s slow and involves no digging whatsoever, supervising the kids when they’re watching TV and aren’t asking me much, etc.
LowGreenAn activity that minimises cognitive, physical or emotional energy
E.g. Watching easy TV –  where I’m not really that engaged and am not following a story, sitting in the garden admiring the birds and flowers, listening to an audio book/podcast but not entirely listening, flicking through a magazine/Pinterest until I start pinning Pins (once I start pinning Pins then it’s a Medium activity!), lying in bed awake pondering why my body is refusing to move, etc.
RestLight BlueNothing – as per my previous blog post – nothing!
SleepDark BlueThis is obvious – sleep zzz!

High is not at the level of ‘High’ I used to be able to do.  Facilitating a workshop, chairing meetings, delivering training, commuting on the tube having run out of the house leaving the kids fed and dressed, etc.  would not be possible in any length these days.  When I first started Pacing – I was still mostly housebound so achieving even just a walk to the park was going to be a huge achievement.  On some days – it still is.  This means that the reality for me is that in the future if/when I can do sizeable chunks of High activities – I still won’t yet be at pre-ME/CFS levels.  As to whether those pre-ME/CFS activity/stress levels were healthy – the jury is out.

Medium, I think, is my favourite.  It’s at a level when I feel that I still have purpose and a sense of achievement.  My head is ideally in a non-stressed/frazzled state and I force myself to focus on just the activity that I’m doing – I’m mindful.  However it can quickly evolve to a High level acitvity without me realising if I’m suddenly enjoying it too much and decide to push myself further or I get emotionally engaged with the activity too much.  Or I let myself start multi-tasking in my head – the curse of being a female who thinks multi-tasking enables her to be more efficient and gain bandwidth!  (And yes – still working on that!).

Low is doing not a lot – I tend to lie down a lot with a bit of TV or the radio on.  If I’m finding that hard as the noise is too much – I now recognise that as a warning sign that I need to rest.  So I switch off the TV/radio – no noise, dim the lights and rest.  And if I’m particularly poignant – I’ll put on Blur’s “This is a Low” to get me started.  

So can you categorise your daily activities into these “buckets” of High, Medium, Low and Rest.   Or more simply – just High, Low and Rest?

Next time – we’ll look at this … Yep – this is partly why I colour coded those buckets – pretty pictures to show the GP.

“A picture is a worth thousand words”

Here’s my ‘heatmap’ of when I was mainly housebound – lots of LOW activites and REST and some MEDIUM activities not much HIGH activites though. Few bits of SLEEP in the middle of day – which my GP noted and tried to get me out of the habit of. Each row ia day over a 24 hour period.

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Pacing – getting started and into the driving seat with ME/CFS

So let’s talk about Pacing and how to get started and regain some sort of control over this thing called ME.

But before that you’re asking – what is Pacing? Well I’m not going to try and define it when others have done so succintly – see below.

“Pacing is a self-management tool. It is a technique to help you take control of the balance of activity and rest, and learn how to communicate to other people about the balance that usually works best for you. “

Action for ME – Pacing for People with ME Feb 2020

This all sounds good and initially you think – finally something I can do to manage my illness/condition. I can re-gain some control! Tell me more and more importantly HOW?

But then – I was handed paper photocopied sheets to record my activity on a daily basis so I could start Pacing.

It felt like being back at school with a compass and protractor. I could almost smell the wooden pencil sharpening shavings and hear the rustling of the tracing paper-grade toilet roll! (And no – that isn’t a symptom of ME/CFS or Covid 19).

I was disheartened, disappointed. Is that it??!

Pencil and Paper Diary
Um – this pencil and paper approach isn’t going to work for me …

However, the idea behind keeping records and a diary is sound

It gives you context and something to review and look back on to see any trends and hopefully see progress.  It gives you data and GP’s like looking at the data – who doesn’t like a bit of data to review, a graph going upwards or downwards or a dashboard?! ( I see you ex-management accountant, ex-COO, ex-retail manager, ex-operations manager , ex-project/programe manager wishing for the dashboard of your dreams!)

It’s just that I’m addicted to my phone (aren’t you?!).  I read the news, I check my social feeds and keep up with happenings in the ME/CFS research world on my phone.  My phone is my main social life these days.  Yes – who doesn’t love a new beautiful notebook to make notes on but I’m not about to carry one around all day and if you’re asking me to keep a diary and to record my activity on a daily basis – you’re going to have to make friends with my phone to make it happen!

Surely there are some wonderful techy people who can make an app?  So yes – there are apps out there.  But you’re at the mercy of the App stores and the developers.  Sometimes apps are there and then withdrawn. And when I last looked- there wasn’t anything out there for what I wanted.  If you’ve found an App that works for you – then let me know or post below!

However I did find a way that doesn’t rely on an App or Developer and is free – so thank you Google!  That’s another post – but first we have to consider the different activities you do on a daily basis.

So to get started – I wrote down my daily regular activities. Waking up, taking a shower, getting dressed, brushing my teeth, walking with the children, walking on my own, feeding the chickens, watching TV, lying in bed wondering when this crushing feeling was going to end, sitting on the sofa, sleep, etc.

Right – over to you. If you want to give Pacing a go – you’ll ned to write down a list of your daily activities. Try it – it’s not that hard. And next time we’ll categorise them into different buckets.

And don’t forget about resting as an activity.