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It’s murder on the patio floor when ME/CFS collides with logic

I like logic.  I like maths – I get it and it makes sense.  1+1  = 2.

I think that’s why I find ME/CFS so challenging at times.  It goes against what I learned at school, my engineering degree and well my general view of the world.  Yes I do sort of realise life isn’t all about algorithms and formulas but so much is the world around is based upon systems and processes (and I like them!). 

Facebook suggests Groups to join based on my friends and my likes.  Whether you are classed with a disability (after an exhausting phone call) depends on a system of questions, answers and points.  You have a job and your salary is automatically calculated and paid to your bank account via a financial IT system. See – algorithms galore!

It’s hard when those systems and processes seem to defy the logic you see before your own eyes.  It makes you question yourself (especially if you’re like me who made a career out of logic and processes).

The outside world sees me at my best.  You don’t realise that what you’re seeing is me not resting, not lying on the sofa for most of the day, not lying there planning what I can do in small enough chunks so I don’t cause a crash.  

Take today.  Today I’ll finally move that plant from one side of the garden to the other.  I’ll do it slowly and methodically so I don’t let my heart rate increase too high. The logic is:

Dig hole – Dig up plant – Move plant – Put plant into hole – Add compost – Water  

In a pre-ME/CFS life – it would take about 5-10 minutes and I’d get a sense of achievement at the end plus hopefully a happier plant.  It’s not something that I would have second guessed or thought much about previously.

Now because I have ME/CFS, I’ve been planning this since last week.  I’ve decided that the critical bit is moving the plant and planting it – that can’t be broken into more chunks but the remaining steps can.  

I dug the hole one day last week.  Then rested.

I filled up a bucket with compost last week.  Then rested.

I moved that said bucket to the planting hole.  Then rested.

All I had to do today was dig up the plant, move it and put it in the hole.  Surely that was do-able in one chunk!  I’d dig up the plant, sit for a bit, drag the plant over to the hole and plonk it in.  

The frustrating answer unfortunately was no.  

I’m back to lying on the sofa after my heart rate suddenly accelerated.  I almost ended up lying down on the cold patio outside to recover but thankfully mustered enough sense to get on the sofa (note it’s just inside the patio door so not far).  

Turns out I was having too much fun feeling alive.  Although I dug up the plant slowly, I forgot to sit before dragging it to the hole.  I was in the moment, I was in the process and forgot to rest.  I forgot to pace.   

And Wham!  Boy was I reminded quickly that I’m not allowed to have fun trying to get a sense of achievement.  I was following the process but surely it’d be fine if I skipped one step.  Well at the point it felt good.  But then my head started to thump, I could feel my heart pounding. Was I about to pass out?  Turns out I’d cranked my heart rate to over 130BPM.  Oh dear.  

This is where logic breaks down for me.  I don’t like it.  

I chunked all the activities and tried to break it down into manageable pieces.  Yet the poor plant looks like it’s been massacred, strewn on the floor alongside the bucket of compost I kicked over as I dizzily made my way back indoors to my safe haven of a lying down horizontal on a sofa.

Murder on the patio floor – the poor plant …

Forgive me for forgetting to rest a bit as I was enjoying the moment.  But no, I forgot to monitor myself and keep myself in check. I forgot to pace

Exercise is meant to get your heart rate thumping.  This was me trying to do a paced activity which I had planned over the week but hadn’t paced it quite enough.  I wasn’t at the gym on a treadmill or going for a run.

The computer says I’m not quite disabled enough.  Yet I’m deemed medically unable to work.  I have an underlying medical condition.  Yet it’s not deemed enough to qualify for a covid vaccine.  Others with ME/CFS have automatically qualified for a covid vaccine though but my GP surgery says the system says no.  

I set myself what seemed a manageable goal over a period of time.  I analysed the As Is process and defined a To Be process – but being human got in the way. 

The logic didn’t work. I didn’t fully follow the process.

And that’s why I find ME/CFS is hard.  The being human bit gets in the way.  

The computer says no.  It’s logical.  But I feel sad, inadequate, incapable, insufficient.  

I can work on myself. Yes – we’re all human and life can’t be simplified to a set of algorithms.

But we’re surrounded by those algorithms and systems.  Surrounded by logic that can’t make sense of ME/CFS.  

I don’t like it and I don’t like how it makes me feel.  

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Back to Black – Lives matter so let’s talk drug dealers and words. Language matters.

So it’s almost 6 months since I didn’t post a Black Square and I didn’t speak up.  I learned a new term ‘Race Adjacent’ thanks to a North American based cousin who read my blog post

We hear a lot about racism in North America – it’s more vocal and more people are aware of its modern and historical context.  In the UK, we still take a stiff upper lip approach to racism and find it hard to talk about – we’re not as vocal. But are we aware of the historical context of the British Empire and its colonies?  Were you taught at school to consider that the great British Empire was once the King of Drug Dealers?!  Yep – think Breaking Bad goes global, replace blue crystal meth with opium and rename it as the ‘Opium Wars’ – these modern cartels are amateurs in comparison!  Ever wondered why Hong Kong was returned to China or how it became part of the British Empire (#landgrab anyone?)       

So there’s education/wokeness needed through conversation but alongside that how do we become more vocal?

This is where North America are ahead of us in the UK – in the language by which they have to talk about race.  And this is important.  Many of us in the UK don’t have the language and therefore the tools to talk about race.  Let alone the confidence and the guts to open up these tricky conversations.  

Do you understand the terms Unconscious Bias, BAME, BIPOC, affinity groups, diaspora, imposter syndrome, privilege, white fragility, etc?

Are you equipped and fluent with the language and also have confidence to talk about race?

Are you aware of using inclusive language?  There’s a huge (albeit subtle) difference between talking about ‘the disabled’ vs ‘disabled people’ – the difference between a descriptor of a group of people vs a collective term.

In the last 6 months I’ve unknowingly been working on he above three questions.  Through watching TV, reading and having open discussions – I have now learned some of the words to talk about experiences I have had over the years.  There’s a common language and now a means by which to talk about and share these things that were so fluffy and intangible before.  Whereas before I had a niggly feeling that something wasn’t right, I didn’t have the right words to talk about it.  Now I feel a bit more equipped to firstly recognise that niggly feeling for what it is and also have the tools of language to express it without being not understood or shut down.

If you’ve read my previous post – you will realise that the death of George Flloyd really affected me.  It made me question my role and impact in changing the conversation and the system.  I’ve also learned that currently we seem to be in a time when we can share our experiences and open up conversations safely. Thank you to all those people who have been willing to engage with me and talk openly over the last 6 months – yes you’ve tended to be females but I guess that’s because of my situation and because you recognise the struggles of being in a minority.

So if you posted a Black Square –  what have you done over the last 6 months since posting that Black Square?  If you didn’t post a Black Square – if you’re reading this – read on and consider what you might read or watch.   Has your vocabulary increased? Do you have the tools to talk about race? Here’s what I’ve been reading and watching.

What have you done and what are you going to do before the 6 month anniversary of George Floyd’s death?

The School that Tried to End Racism on All4 (Channel 4 On Demand)This was filmed a year before George Floyd’s death and in a school with a white, male and progressive headteacher.  I found this hard to watch as a parent of mixed kids – which room would they go in?  
The Talk on All4 (Channel 4 On Demand)Again a hard watch as a parent. Have you considered when and how to bring up and talk about race to your children?  How do you explain systematic racism, its consequences and break that childhood innocent?
White Fragility: Why It’s So Hard for White People to Talk about Racism  by Robin DiAngeloThis is quite a heavy read but the term ‘White Fragility’ has crystallised a ‘niggly feeling’ for me although I’m not sure I’d be brave enough to use it.
Queenie by Candice Carty-WilliamsBoth well received books – these opened my eyes to others experience in seeing their worlds and hearing their voices
Girl, Woman, Other by Bernandine EvaristoIt won a Booker Prize.
Watched Good Trouble Season 1 and 2 on BBC iPlayerLove this – I’m still watching it. It raises so many of the issues I can relate to …

Let me know if you have an tips on what to read or watch next – my ‘What Next’ list includes:

How to be an Antiracist by Ibram X KendiSo the concept is that an action racist or antiracist – there’s no in between …
Native: Race and Class in the Ruins of Empire by AkalaHopefully I’ll learn more about the Empire from this.
Something written by or presented by David OlugosoEnough said.
Crip Tales on BBC 4 iPlayerWatching and hearing about life through the lens of disabled people – eye opening.
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Going into battle to Make Every Poppy Count and support research into ME/CFS and Long-Covid

Make Every Poppy Count AND support research into ME/CFS and Long Covid by buying a Poppy Face Covering

As a generation or two –  a lot of us in the UK haven’t been through the experience of war and the subsequent consequences.  We’re a lucky generation – spoilt perhaps.  Blessed.  

However we’re a generation that’s going through a pandemic.  Historically others have been through a pandemic.  But this is a pandemic where we have daily updates, global information,  21st Century medical care and big data.  Some consider this pandemic our generation’s version of a war.  Is it? 

We don’t have rations – although we did struggle to get those online supermarket slots and were limited from stockpiling.  We don’t have gas masks and hard hats – although we have Face Shields and Face Coverings and hand sanitiser at hand. 

Speaking to people from the generation who lived through a war – this pandemic experience is different.  The biggest gripe is the loss of personal freedom.  I think we can all empathise with that.

With war the pain was sharp.  The terror as the alarms went, the fear as the planes flew over, the anticipation of bombs exploding.  Then the quiet afterwards.  Emerging from shelter – the experience was physical.  You could see, hear and smell the results.  My childrens’ great-grandmother recounted the morning after a bombing in Sheffield.  She and her best friend walked miles and saw the destruction, the smouldering embers and her Uncle’s haberdashery shop – destroyed.  Everything gone.  The impact of war was in your face – you woke up and saw it day to day.  But – you had your personal freedom.  The alarms warned you, the planes scared you, the bombs shook you – yes they took away your personal freedom.  But the next morning – if you were alive, you could go and see and feel the damage.  If you were lucky to be alive the next morning – you had some personal freedom (until the next raid). 

With this pandemic – things aren’t as sharp or acute.  The physical manifestation of this war with Covid-19 is hidden to many of us. It’s being fought in the hospitals, care homes and laboratories or at home if you’ve got it.  Away from our eyes and our senses.  Without this – we rely on the news, our social media feeds and whatsapp groups to experience this war.  The terror, fear and anticipation  – we can’t hear or see it physically.  For many of us – there’s no morning after where we emerge thankful we’re alive whilst taking in the consequences.  We can’t visualise this enemy who is taking away our personal freedom.  It’s a sustained period constricting our personal freedom.  Much of this war is a mental battle.  Much of this war is virtually experienced rather than physically experienced.  I’m thankful I’ve not had to make life/death decisions like the healthcare and social care workers.  I’ve not had to deal with that in addition to the mental battle we are all facing.  

We’re also starting to see consequences of the pandemic with Long-Covid and research into this area. ME and Long-Covid share a lot of the same symptoms. (Thank goodness NICE is cautioning against GET (Graded Exercise Therapy) for those suffering with Long-Covid / Post-Covid – ironically it’s taken a pandemic for NICE to caution against GET vs. years of campaigning by those suffering with ME/CFS).

With the war we had front-line workers, key workers – fighting the war.  Off they went – some never returned.  Others returned – damaged.  You could see the physical scars (although the mental scars remained hidden). 

With this pandemic we have front-line workers, key workers – fighting the pandemic.  But most of them day in, day out return home.  Life continues – the fear, despair, anticipation.  Less physical scars (but with potential mental scars hidden). 

With the war – afterwards we looked after and paid respect to those front-line workers. Those who went into batlle.

With this pandemic – how will we act to look after and pay respect to those front-line workers who have been at the coal face? 

With the war – we have the Royal British Legion.  The poppies synonymous with remembering and fundraising for the front line workers.

With this pandemic – what will we have?  The rainbows?  Will we remember? 

What will be the legacy for the NHS and the front-line workers?

With this all in mind – I’ve chosen to make and sell Poppy-inspired Face Coverings to raise funds for both the ME Association and the Royal British Legion.  

Yes – Every Poppy Counts. But will you remember to make Every Rainbow Count, the NHS and our Front Line workers in the future when we emerge?

Buy a Poppy Face Covering here!

Poppy Black 1

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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.

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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!

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Living in a Box … Living in a Cardboard Box …

I’ve been ticking one box my whole life and it’s hard to consider that, with the way ME affects my life, I might be ticking another one – sadly the fact is that I’m not as able as I used to be.
But today I’m going to talk about the first box as I’m not there yet with ticking the other box.
So here’s the box I’m going to talk about – let’s go gently as it’s a delicate and emotional subject! But we need to talk.

The ethnic group question from the 2011 Census. Source: 2011 Census England Household questionnaire, Office for National Statistics (ONS)
The ethnic group question from the 2011 Census.
Source: 2011 Census England Household Questionnaire, Office for National Statistics (ONS)


It’s just over a month since the death of George Floyd and an outpour of racial awareness and unfairness erupted. Black squares clogged up my social media and I was appreciative of those who were aware of their privilege who posted but also aware that some of us who fit the ethnicity boxes – didn’t. I didn’t post a black square.


It bugged me – why didn’t I? After much thinking I realised that it’s because as ‘Yellow’ I’ve spent most of my time trying to fit in and not raising the race issue – I know it’s hindered my life but also as ‘Yellow’ I think I’m perceived as less different and less of an unknown – which helps. The British Chinese minority represent 0.7% of the UK population and are known as the Silent Minority. Chinese children tend to do well at school – but interestingly their educational achievement does not translate into better rates of employment. We tend to stay quiet as maybe ‘Yellow’ is a less threatening colour and culturally younger females don’t speak out. However I realise my privilege of being seen as ‘Yellow’ and am thankful for it (even if I still feel discrimination).


At primary school I remembered the slanted eye gestures and the “Chinky” chants that came of being one of the few ethnic minority children. I was lucky that although English was my parents’ second language – they worked in the NHS and used English on a daily basis. This meant that they could engage with the school and ask the teaching staff questions when needed. So thank you mum and dad – thank you for being able and willing to engage with the school to understand the UK education system – I know it took perseverance and tenacity. I know English was your second language and having not been educated in the UK – you didn’t know what a State Grammar School was – but you listened when your daughter said she’d heard of one and wanted to go to one. You found out what they were and supported me even though we came from an ‘English as an Additional Language’ (EAL) household. There was no chance of a tutor but we worked together on it. Thank you as you helped me broaden my opportunities and increase my privilege in this world.


Starting my career – I realised being a Chinese-looking female – you look young and can lack gravitas. I was lucky to receive some training when I was told bluntly that my voice hindered me. The enthusiastic and higher timbre of my voice re-enforced that I was young and not experienced – I learned quickly when presenting or participating in meetings I needed to speak lower with more bass in my voice. Plus I had to repeat points and fight to get recognition of them – it’s a lot easier to recognise a point when it’s raised by someone who you feel familiar to (because of their looks) even though you don’t know them or their experience. Young, female, non-white – I did okay but was conscious of it.


I’ve been told multiple times to ‘Go Back to Where you Come From!’. I’ve been asked in front of others ‘Are you being Racist?!’. Both times ironically by older white males – and no neither times was I being racist. I was talking about race and colour but I wasn’t being racist – I wasn’t disciminating against someone because they had a different colour – I was talking about it – I was conscious. It hurt and put me back in my box and sometimes it’s just easier to stay in the box and be a known quantity.


I think it’s human nature to fear what’s unknown and to like what’s familiar – I believe we’re ALL guilty of some sort of unconscious bias. For those who say I don’t see colour – you do. For those who say they’re not racist – I don’t believe you. Saying either of those phrases raises my alarm bells – I need to tread gently in discussions with this individual. It’s much better to say what you are rather than what you aren’t. When curious about someone’s background – you may be scared of offending the other person but if you approach it openly and with an interest to find out more – I doubt you’ll offend them. But maybe don’t ask ‘Where are you from?” – that’s too loaded because we’ve been told so many times to go back to where we came from even if we were born here. What’s your cultural heritage? Do you mind telling me more about yourself, your background or family heritage?


I’m aware of my privilege and culture. Are you? I’m sharing my experiences so maybe you can start to understand. From experience – females will more easily understand as we’ve been together on a similar journey and those who are less able or have been affected by chronic illness will more easily understand too. Sorry for the generalisations – perhaps you’re a white male and you’re angry at me for generalising. But I’m aware that I’m generalising – I’m conscious that I’m generalising. Are you conscious? Or are you still unconscious without realising it? Try this test – I have.


However enough about me – currently there is one house that is really burning and I need to speak up even thought it’s hard.

So I’m trying – I’m trying to speak out.

I get you Reni Eddo-Lodge as to why you wrote “Why I’m No Longer Talking to White People About Race”. I get how you felt you can “no longer engage with the gulf of an emotional disconnect that white people display when a person of colour articulates their experience” – it is SO emotionally draining trying to get your point across.

Because they have privilege and have never experienced not having it.

#BlackLivesMatter


Thank You to the White Male Ally who spoke up publicly and inspired me to speak out more.

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I’ve spent the last 3 years training for this lockdown marathon!

I keep wondering to myself – why now, why start writing about my experience with ME and sharing it more publicly? Why attempt to fundraise and homeschool at the same time? (although let’s face it not a lot of home schooling is happening right now over here).
Well apart from the fact that I’m now able to – from a physical, emotional and cognitive level – I’ve realised I’ve actually been in training for Lockdown over the last 3-4 years. Yes – little did I realise that my last 3 years have been a dry run for Lockdown and equipping me with the resilience and coping mechanisms for what is happening right now in your world. (I know – you’re jealous aren’t you? I got a headstart on you! Whether that’s fair or not – you can decide …).
Imagine life as you know it changing overnight, no longer being able to socialise with friends and family how you’d like to, learning more about an illness you’ve never heard of before, being worried by what you read about the illness and wondering how it will affect you and those closest to you.


Now consider adding in loneliness into the mix. During this lockdown a lot of us with children have been pushed to the limits with having a full house all day and trying to juggle work or other commitments. But let’s be grateful you’re in lockdown with people you can chat to, hang with and interact with. Imagine lockdown with those who have no one to talk to, no one to share their worries or fears to, ashamed to talk about their situation or perhaps are just surviving and don’t have the energy to communicate with others (whether by talking or by text). It’s lonely. And perhaps factor in the shame and guilt of being lonely. Maybe that’s why I haven’t been in contact over the last few years with you? I’m sorry – I wasn’t in the right place to.


So – not only has your world been turned upside down – you’re lonely and you miss your old life, your old self.


My old self – who was she? I hadn’t realised how much pride and self worth I derived from being a ‘working mum juggling everything’. Yes it was a struggle at times and perhaps I had unrealistic expectations. I loved (correction – I still do love) karaoke, I loved going out for drinks and getting a bit mischievous, I loved creating change and implementing change in the workplace, I loved doing things and adding value where I thought I could, I loved thinking about things strategically and then translating that into practical things – I’m definitely an engineer not a scientist!


Suddenly – I couldn’t do. I couldn’t even think. I didn’t know what was happening to me – I didn’t have the ability to do what I prided myself on. I coudn’t work things out and how to improve things – I couldn’t think. All I could do was lie there in bed – no thoughts, no thinking, no worrying – just blankness. My husband might ask me what I’d done all day – I had no answer – the answer was nothing. My inner voice would start on me – you’re being lazy, why can’t you just get up, why can’t you just start thinking, what’s happening to your brain, you’re a waste of space, you’re useless – Get Up! Get Doing! But my rational, university-educated brain and my physical body – wasn’t able to respond. There was nothing there – I wasn’t able to consider that I was actually ill, that something was wrong with me. And apart from the blankness – there was shame and guilt.


Looking back – it wasn’t a great place to be. I wasn’t able to realise I was in a hole, I was ill, I was depressed. I had no thoughts, no plans and no opinions (which if you knew me previously to getting ill – it would surprise you).


So yes – I’ve spent the last 3 years in training for this lockdown marathon. I’ve been in a mini lockdown of my own for the last few years. And it’s taken that long for me to even start to accept and adapt and be brave enough to share. So please be gentle with me and don’t suggest I’m wasting your time.


Ironically – I’m not sure I want lockdown to end. I get more time with my family, I get to socialise via Zoom with friends I couldn’t meet up physically with, I can attend meetings virtually rather than spending precious physical energy getting somewhere. People seem more tolerant and compassionate without me needing to explain my illness. Where previously, suggesting a virtual meeting was frowned upon as it was something different – this lockdown has forced people to adopt technology that existed previously. Its changed company and organisation cultures overnight and also people’s views of productivity levels when working from home. And let’s admit it – changing the culture of an organisation is challenging and not always successful in implementation. Changing the view on working parents working from home has been a long uphill battle – will this change triggered by a pandemic stick longer term?


I don’t know but let’s hope we’re currently in training for a more diverse and compassionate society and workforce. And that we change our behaviours long term after this period of training.


Let’s not forget those who might be in their own mini lockdown right now or in the future – they’re in training and will need your support. Because you’ve been there now and experienced it and have learned from it. Right?