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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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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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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 ….