Being diagnosed with ME created an unforeseen learning curve; the mental equivalent of Tough Mudder. It’s not something that I’ve written much of.
And so, as there are sixteen minutes to spare before lunch is ready for the eating (we’ve chopped and peeled and grated our way through Lake Street Dive), I’ve opened my laptop. Here’s hoping that the following might make some sort of sense.
It, and this blog, have been a bit neglected that past few weeks. But there really was no point to starting this account in the first place – with the hope of giving an insight into overcoming ME, or helping someone else feel not so alone in their experience – if I jog off (unlikely) into the distance as soon as I start to feel a little more myself.
Post diagnosis I was a gal who loved a plan. I also love hyperbole, so I’ll correct myself here.
I actually didn’t ‘love’ a plan at all, just quite enjoyed having one in place every now and again. I’m not talking bigger picture stuff – I rarely handed a piece of uni work in on time, let alone plotted out the years ahead. But I loved the happy anticipation that came with checking my diary to see what awaited in the week ahead.
Anyway, once a small, fairly ironic (given lateness to all resulting plans made) quirk, this penchant for a plan was taken to a whole new level in 2015, when regaining my health became number one focus. And that’s because having a plan in place suddenly became absolutely key to functioning.
An example; in order to still be standing come 6pm, my day would need to be thought ahead to the finite detail. From the number of times I’d take the stairs, to weighing up whether I’d rather wash my hair or make my bed. Every menial task subject to strict scrutiny, with each day requiring a plan of sorts.
Focusing intently on the running order of the next few hours was an excellent distraction from the panic of progress I may or may not make in the months ahead. (Still undecided if this made me some sort of mindfulness guru, or owner of a not-quite-so-healthy coping strategy.)
Rewind a few months back, and I’d been marching about London with presentation in hand, taking clients out to lunch and sticking my face into cheesecakes for all the good gags. Now I found my stomach doing Olympic worthy somersaults – impressive for the girl still unable to master a cartwheel – at the thought of a group gathering.
This came down to a fairly rubbish cognitive ability, which was making the process of conversation tricky. I’d forget words constantly and didn’t have a hope when it came to standing, holding eye contact, taking in information amongst inevitable background noise and forming a coherent response.
At a Christening that I’d been feeling particularly anxious about, I found myself in pew two almost shedding a quite undignified tear. Admittedly, this could have been passed off as some sort of bizarre response to sweet baby overload. In reality, it was because I didn’t know what the rest of the afternoon entailed; if at the celebration there would be somewhere to sit and take a breather, or worse still; if guests might come to the conclusion that I was serving some sort of silence penance, incredibly dull or just inconceivably rude as I struggled for the cognitive skills required for basic conversation.
And as I didn’t know who would be there, I was unable to think up the most likely course of conversation in advance, or to ready myself with appropriate, easy replies.
Yes, this is the level of planning we are talking about; I was actually practicing imaginary conversation. Desperate to come across as a totally normal, healthy, chilled out, regular twenty five year old Zara wearing gal, I was spiralling.
In my defence, at a time when health had gone tits up, planning to the strictest detail allowed me to momentarily feel in control. But as time went on, the more caught up I became in needing to have a plan in place, the more anxious I’d feel without one. I’d created a habit that as my health improved, was hard to break. And so, what I really, really missed from the ‘before’; the unconscious ability to just go with the flow.
For such a long time my health had made just saying ‘yes’ and seeing what happened impossible. But a couple of months back, I had the realisation that sure, for now I still have to balance my week to save myself from crash and burn, but I can give most things a go (within reason – don’t sign me up for a Marathon just yet*), without fear of total relapse.
This realisation was freeing and fabulous in a Beyonce standing in front of a wind machine kind of way. And starting to embrace this, at times still quite consciously reassuring myself that I don’t need to know exact running order of events, has been bloody brilliant. In concentrating on the physio and the pacing and the vitamin pill popping over the past year, I’d forgotten the mental toll that any illness, fleeting or for the foreseeable, invisible or otherwise, can take. And so, with that, I’m making the conscious effort to stop whipping out my diary a multitude of times a day, and to begin to enjoy the unexpected once more.
Just last week; a ‘yes’ to a spontaneous trip to France, with no telling of what the two days would bring. And in not having a plan, each new bit of the trip unfolded like a little gem of a surprise. The days surpassed every expectation, because there really was none at all to start with. And with that I felt pretty damn chilled and happily at ease.
I’m planning/not planning on keeping it that way.