Thursday, 4 February 2016

When brain fog clouds my words

Sometimes brain fog scrambles my dictionary, resulting in random words being inserted into otherwise sensible phrases. Or makes it vanish entirely leaving me to mime the relevant thing.

I'm not talking about those times.

I'm talking about the times I can say whole sentences, which are totally relevant to the conversation, but my ability to process information, and to draw on my own memories/ideas/experiences is missing - I cannot give a considered response.

When the views I state aren't what I really think - like the difference between a knee-jerk reaction, and a 'have sat down with a cuppa and had a good think about it'. Only more so.

In that moment I am unable to do anything to improve my ability to say what I mean.

When discussing the weather it doesn't matter.

In a business context, I can usually get away with it. Those I do business with know I have complex medical stuff going on, so I say "I'm sorry, I can't process what you are saying, could you drop me an email or call tomorrow?" And I have never had them argue, just smile and say 'OK, I'll be in touch'.

But when speaking to a medical professional it is downright scary. And being anxious about the likely misunderstandings can make it even harder - as can the frustration of seeing that there has been a misunderstanding but being unable to find the words to address it.

For example, they suggest an exercise that might help. and my response might be very negative. I sound anti-exercise (which is essential to manage my conditions, but also challenging) - but actually I just can't articulate myself well enough to express my concerns clearly...in fact I probably can't even think of my concerns clearly...I just know that the suggested exercise rings unspecified alarm bells...but until I have time where my thoughts are clear, I won't be able to work out whether those 'alarm bells' mean 'tried it, disaster,' or 'proceed with caution, concentrate on using right muscles' or 'try alternative' or 'hurt once, but you are stronger now, so it's probably safe to try' or 'current injury so not possible now, try next week'. So what I say will be "no". A no for which I cannot give good reason because my thought and spoken words have failed me.

It feels like my explanation is an approximation of what I am trying to say, but not accurate. Like a photograph that is out of focus, so you have to guess what half the things in it are.

So I say "I'm sorry, I'm not explaining myself well"

The responses:
"Oh, don't worry, you are doing fine"
"It's OK, I understand perfectly"

Attempts at reassurance, perhaps? - but it is not reassuring. It is totally ignoring the message I am trying to send.

How can you understand what I have not said, and right now, I cannot say? I KNOW that my explanation did not reflect my reality, so how can you say you understand it? I didn't make that statement out of an irrational worry or a lack of self esteem or such like. I said it because it was true. And because I need help to find a way that I can communicate accurately so that you can understand, and we can come up with the best plan to move forward. I said it because I need you to know that my words today have only been a vague indication of my situation.

Instead I am left knowing that there is a good chance that my treatment will be decided on misconceptions and misunderstandings. It's disheartening and scary.

The responses I want, and need are:

"Is there anything that would make it easier for you to explain?" - For me, (with POTS), being able to lie down for 5 minutes somewhere cool can make a big difference to my clarity of thought. Or perhaps writing instead of speaking would help. Or even drawing a diagram.
Or could I have a list of questions in advance of an appointment so I can write my answers when I can think clearly?
Or "This is what I have understood from your explanation so far...Is there anything you think isn't right?" but be prepared -  I may not be able to explain the bits that aren't right. But at least I can point out questionable parts so that the professional is aware that they are approximate, and can try to get clearer information another time.

So if I ever tell you I'm too foggy to explain something, please don't reassure me that I'm fine. Or that my explanation is fine. Instead, help me find a way forward, a way for me to help you understand. Even if it involves trying again another day.