I have a great need to record. Everything from moments to Storage Wars marathons. (Unsurprisingly, I also started a blog.)
I need to record this illness.
Not simply the pain levels, appointment dates and medication intake but the experience of it. It may have been lasting a long time but you can forget just how bad a flu is until it rolls around again.
You forget what it’s like to be not “as ill” as you were two months ago.
On the flip side you forget what it was like to not be ill at all, back when this wasn’t your normal.
And I really don’t want to forget these things.
I think this comes from a desire to be able to communicate this experience to others. More than anything all I want is empathy. Not pity, not potential solutions your aunt’s mistress’ goldfish supplier used.
And though we can only empathise so much anyway, I have found that my experience of life is very different to the “normal”.
There’s a greater task ahead of me to gain the understanding I want.
This isn’t only important in my personal relationships but hugely important for my health. If I can not communicate to my doctors – if I can’t explain symptoms in the presentations of data they want (how many painkillers, what type of pain, when, why) – I can’t get the best healthcare I deserve.
Let alone the fact that being isolated in an experience can bring great loneliness.
Online is where I’ve found the most sense of community. Using the term spoonie as a quick identifier for someone who lives with chronic illness, I’ve made great friends. Not all we talk about is illness, but being able to relate to this shared experience is so valuable. Being able to see my experience written in others’ words, words I couldn’t put together myself, is a bunch of mini revelations.
That’s why I want to record this, for other spoonies as well as for people without a clue.
I’m always trying to find new analogies for pain.
“Y’know, when it feels like you brain’s been in a washing machine and you brushed your arms with wire wool?”
They don’t always hit the mark.
However this desire to record has definitely got me in trouble. I can’t record everything, especially not with such a dodgy memory.
Getting used to my impaired memory has been very hard. Losing the ability to know for certain what has happened has given me real anxiety. There are great big gaps where my mind pings around trying to find any detail to hook on to about that day or week so I can start to build a picture of what may have happened.
I thought I had somewhat managed to let go. Recently this need had been challenged as I found writing increasingly hard. I stopped even wanting to think about the stories because any ideas I liked I couldn’t write down and would not remember.
Hoping to write this blog left me overwhelmed at what to write, just how to capture this experience and my perfectionism came into play.
Most of all mindfulness has made me realise that I need to let go of my memory.
Trying to be in the moment, noticing and not judging; these require me not to make mental “markers” of the level of pain, of the smell in this room, the emotions of being in this situation.
I need to experience it in that moment and it does not matter if I can’t remember how it felt in the next, if I can’t remember how it felt in a few hours, days or weeks.
However this blog can help me. The writer in me needs to know how this all feels. Because little details ground writing.
What if I’m trying to write a character attempting something for the first time and I can’t remember all the emotions you go through? What if I’m trying to describe a setting but can only conjure up a hospital room I visited once half filtered through imagination, when my character has been living in a hospital room for months.
And so the aim for this blog: writing and dumping it here is good enough. Excellent insightful thoughts at 1am can be left to surface again or not.
Any details captured are great but I can’t catch them all. This isn’t Pokemon.