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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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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.