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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.

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Life changes with Minecraft – I’m learning about Realms, Bedrock vs Java, Mobs, etc!

With ME/CFS – we all learn new terms and phrases. It was is a learning experience – a new term I’ve heard about recently is LDN (Low Dose Naltrexone) from a North American buddy.

#PwME, Pacing, CBT, Brain Fog, COQ10, PEM (Post-Exertional Malaise), Payback, ME, Spoons, POTS, PVFS, LDN, etc.

I’m currently going through a similar learning experience with Minecraft – yes my child seems to be addicted to it and I find myself trying to understand new terms such as Creepers, Blocks, Nether, Obsidian, Realms, Creative vs Survival mode, Ender dragon, etc.  

I’m questioned on how things work and I’m having to ask whether we’re talking about Minecraft or IRL (In Real Life). All whilst I’m learning new phrases/terms.

Did you know that if you combine Lava and Water you create Obsidian?” asked my son.

“Really?!” I answered whilst searching on my phone

It turns out this is true in real life as well as in Minecraft.  Obsidian is volcanic glass.  I doubt a normal conversation at home or school would cover this part of the Geology syllabus – but Minecraft has and we had a fun discussion about volcanoes and lava!

It’s 2020 – the year of the Coronavirus and Minecraft is almost 10 years old.  Like a child it has grown and developed, it has even changed its name and Microsoft adopted bought it.  Can you remember what digital life was like 10 years ago – no Whatsapp, no Twitter and iPhones were still in their infancy and the UK had a coalition government with the Cameron/Clegg bromance.

And what “Minecraft” meant 10 years ago is different to what it means now.  Confused?  I was too.   

There are different versions of Minecraft

  1. Minecraft Java edition (formerly known as just “Minecraft”)

Gamers with years of experience of playing Minecraft are likely to be using this version.  They’re hard core!  I’m not.  I’m just a parent who wants to let my child play with a computer game which seems reasonably educational. 

  1. Minecraft (formerly known as Minecraft Bedrock edition but now as “Minecraft”)

This is the version I’m learning about and talking about.  It’s likely that if you’ve got a primary aged child and you’re playing on a PC/laptop , Nintendo Switch, PS 4, Xbox or a tablet/mobile – you’ve got this version. 

  1. Minecraft Education Edition

I’ve yet to work out how I can download this edition as I’m not an educator/teacher but it’s out there.  I’d love to find out more about Minecraft Education Edition and how it can be used as an engaging teaching resource.

  1.  Minecraft Pi edition

This version doesn’t get much of a mention as it’s only available on the Raspberry Pi.  The Raspberry Pi is a great little cheap computer which does the bare basics – word processing, the internet, watching Youtube, Minecraft, etc.  It can be used for Coding projects when the kids are older – all for less than £100!  We actually played this version for about a year. It’s a great introduction to Minecraft for 5-7 year olds and when people describe Minecraft as ‘virtual lego’ – this version is pretty much that.    But it’s basic and an 8-10 year old will want more.

The beauty and simplicity of Minecraft (Minecraft Bedrock edition) is that it is cross-platform

One friend might play on a tablet, another on a Nintendo Switch and another on a laptop – but they can all potentially play together.  Some households have gaming computers – some don’t, some households have a computer at home – some don’t, some kids have a laptop/Chromebook – some don’t and some households have a tablet for the kids.  

But as long as you have some sort of tech or digital device at home and your child wants to play Minecraft with their friends – they could do. 

With Minecraft becoming cross-platform – it’s all rather clever of Microsoft but also a levelling tool across households.  You may not have a fancy Nintendo Switch or a PS4 at home – but if there’s a device at home you could potentially join in and play Minecraft with your friends.  As to whether you’re allowed to –  well that’s for your parents to decide. 

And if your parents decide to take the leap into Minecraft – they might get confused (like me).   Because if you are new to the Minecraft world and start Googling “Minecraft”, it’s not always clear which edition of Minecraft is being talked about.

So let’s be clear – it’s 2020 and I’m talking about Minecraft (formerly known as the Bedrock edition).   Lots of internet posts on Minecraft dated pre-2019 aren’t talking about Minecraft Bedrock edition – they are talking about Minecraft Java and you can get rather confused.

The End …

As a parent – I’m looking at Minecraft as a way for my kids to socialise online with friends whilst playing a game that seems reasonably educational.  I want to retain some sort of control over who they can meet online – and that’s when we start talking about Servers and Realms … 

I’m discovering a world I don’t know much about, I’m learning new phrases/terms and differentiating how this world is different from the one I knew. I’m confused by what I read on the Internet – sound familiar to when you first got ill and diagnosed?

And in the meanwhile – looking ahead. Microsoft supposedly has a 100 (!) year development plan for Minecraft – so potentially this game might grow with our kids (or it’ll be replaced by something like how Friends Reunited was replaced by Facebook) and I want to know what they’re getting into.

And maybe by then we’ll have a diagnostic biomarker for ME/CFS and know more about the ME/CFS world and how it works.

But first – I need to console a child who’s gone into the End* and can’t get out?!?!

* It turns out the first time you go to the End – you have to sit through credits – yes credits like Film credits scrolling down the screen. Genius – a lesson in patience as the credits scroll on and on and on ….

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Learning to Rest – we’ll talk about Pacing next time

pen calendar to do checklist

What is Pacing? Rest?

Unfortunately with ME there isn’t one magic pill or treatment to help us get better – less ethical individuals may claim there is.  Such is the nature of an illness where individuals with similar symptoms yet unknown causes are grouped together with the term “Chronic Fatigue Syndrome, Post-Viral Fatigue and ME.”  And such is the nature of hearing the words “Chronic Fatigue Symptom” to suppose it’s about being tired all the time – a syndrome not an illness or disease.  That’s why you’ll hear the term “ME/CFS” a lot – as CFS alone doesn’t seem to give the illness authenticity.  Plus if you have the associated brain fog and cognitive effects of ME/CFS – try remembering and pronouncing the words “Myalgic Encephalomyelitis” in a sentence.  

It’s frustrating – along with finding it now hard to do VLOOKUPs and simple Excel formulae  – seriously “SUM”, “Open Bracket”, “Oh no – what was that cell reference again?!”, “SUM – ummm – I give up!”  Why doesn’t my brain work anymore!!!  Let’s not even consider IF statements and nesting.  Thankfully though my PowerPoint skills seem to be reasonably retained.

So – what has helped for me in managing my ME and trying to get better.  

Simply:

  1. Rest
  2. More Rest
  3. Lymphatic Massage
  4. Counselling / CBT – individual sessions to help me start to accept and acknowledge my ME and self compassion, and group sessions with fellow ME people where we’ve all gone through a learning journey
  5. Pacing

What hasn’t helped:

  1.  Graded Exercise Therapy

What might have helped:

  1. Antidepressants
  2. CoEnzyme Q10
  3. Vitamin and Mineral Supplements

So what is Rest?

This is the scarey thing with ME/CFS.  Rest means rest.  That means no reading a book, no watching TV (yep even a guilty pleasure like Love Island or watching Wimbledon doesn’t count as rest), no background music, no planning the weekly shop in your head whilst sitting.  It means no spending of physical, cognitive or emotional energy – just nothing.

It’s hard.  It doesn’t really fit in with family home life or working or commuting.  For me – doing nothing was a huge challenge.  It still is – as I feel like I’m wasting my time.  Having been juggling home and work life and spending my spare time creating lists and plans for what seemed like important things at the time – this was hard.  This didn’t fit in with my core beliefs about my value as a person.  Pre-ME/CFS – I knew about Self Care and Me Time – because that’s what people talked about but did I really believe in it and execute upon it?  Not really – and if I did – I’d try to plan and make things easier for those looking after the kids – and in effect place more burden on myself. 

I still struggle with the difference between Self Compassion and Selfishness.  

Now this blog post was actually going to be about Pacing – I was going to talk about Rest and how I used Pacing to help me get over the idea of “Doing Nothing” and and how I tracked it so I could measure it and so change my approach to Rest.

If you can’t measure it, you can’t manage it – isn’t it lovely how management speak and ways of working in the Corporate world creep into how you approach life! Well that’s how we approached projects in Consultancy back in the day …

However – I can feel my symptoms flaring up – sore throat, painful lymph nodes, my temperature is all over the place (mainly feeling cold).   And so I’m going to take some of the medicine which I’ve learned through CBT – Self Compassion. I’m off to rest.  

However if you aren’t needing some rest and can do some low level activity and watch TV – then I’d recommend Brene Brown’s TED Talk on the power of vulnerability. 

I’ll share my geeky spreadsheets and pacing diary another time!