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.
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.