Tag Archives: brain fog

what did I say I would do?

If it’s not written down, it doesn’t happen. In order to impede on my consciousness, it needs to be written in the diary, in the calendar AND on the phone. Daily email reminders are useful. Even so, I’m likely to be amazed that the event is to take place this week. Is it that time already?

from: http://chronicillnessmemes.tumblr.com/post/52941578985/ladyobsidian-lol-i-wonder-about-this-at-least
from: http://chronicillnessmemes.tumblr.com/post/52941578985/ladyobsidian-lol-i-wonder-about-this-at-least

A film crew is coming to the house tomorrow morning to record my experiences of living with a neurological condition, and something of my mother’s story. I have no idea what I’m going to talk about- they’ll be able to film brain fog in action.

I’ve talked a bit about herself on film before*, but this is a different beast. I’ll have to talk about myself. How my life has been changed by illness. How I’ve become familiar with uncertainty, and discovered there is such a thing a sociology of health. (That could be really interesting, if my brain had the energy to check it out properly. I could figure out how I do biographical disruption and recreating self. Any sociologists amongst you?) Have you spotted that I’m referencing journal articles rather than considering my emotions? Hmm.

I have thinking to do, and not much time to do it in. But then, I’ve had years of it. They may not be able to shut me up once I start.

 

*you can see me and Jake about 4 mins in

 

of dancing, rare disease, and a boy scout

I’m not so good at the ME ‘pacing’ thing. This will come as no surprise to the regular reader. I do all the things I’m not supposed to. I’m usually flat out busy or flat out recovering in bed. I want to do all the things, usually at once. I don’t recommend it, but it seems to be my way.

That means that my brain make up over the last few months has probably been:

35% rare disease events, training, support group, survey, what else can I do, of course I’ll do that

5% wee blind doggy literally bouncing off walls

5% Irish dancing things dress alterations, new dress, competitions, summer trip to France, fundraising, make the sandwiches

50% I can’t remember anything, what did I say I would do, wake me tomorrow, who, me?

5% the rest of life.

(Bloggy buddies, you fit in the final 5%. Not only I have I not been writing here (or anywhere) but I haven’t been able to keep up to date with y’all. I may have read your posts, but not commented. I may not have read anything at all.)

It’s true, for my own sanity I need to address the balance of my mind and my energy. I will, I will, I will.

In other news, Ditzy and I were out last night at a rare disease symposium at one of the universities. We did mingling and chatting and listening to talk about genetics. We may not have understood everything, but such is life. I was asked a question by a young woman who responded to my answer with ‘You don’t really know, do you?’ Harsh, but accurate. She was a biomedical scientist and my grade C in O’level biology from 1981 was no match. I need a crash course in the science bit.

bob chaos

Somehow, together, Ditzy and I attract oddness. Individually we’re sensible people. She’s a retired accountant, a proper grown up, and I’m vague, anxious and a bit mouthy, but together we operate in (create?) a world of chaos. We tried to get into the car park, but the barrier remained closed. Buttons were pressed. Nothing. We wondered if the event had started. More buttons. Still nothing. Ditzy put on her little old lady face and approached the car whose exit we were blocking. She wore the man down until he came to rescue us by pressing a different combination of buttons. Ditzy smiled and simpered and fluttered about, thanking him for rescuing two old ladies (She meant me! We spend so much time together she really thinks I’m her age!)

But what else could the man do- he was an actual scout, in uniform. Toggle and all. He couldn’t ignore distressed white haired women, no matter what age, or the whirlwind of mayhem surrounding them.

 

 

coming round

Last week my brain was full of details- parking spaces, electronic note takers, room for pop up displays, special diets. These things may not effect the overall flow of our conference, but they would impact on individual experiences, and on the mood of the event. Chairperson had different matters to deal with- 2 days before the Health Minister was due to address our conference to mark international Rare Disease Day, we had a political upset that threatened to bring down the government.  Chairperson spent a lot of time on the phone to politicos and senior civil servants, quietly tearing her hair out. In the end (and not due to Chairperson) he was able to turn up, say his bit, get the pictures taken and run off to an emergency debate.

Everything happened as it was meant to- delegates got registered, the sound was good, powerpoint worked, poster competitions (scientific and children’s) were displayed and judged, drums were drummed, food was yum, and we got to blame the Minister for running late.

When the delegates left we had some tasty cake and a little fizz.

The former bundles of stuff in my house are now in bags, dropped where I came in on Friday evening. I need to start sorting them out, gathering receipts, wondering where the evaluation forms went. But for now, I’m pacing myself.

awake

me, obsessed?

Rare Disease day is on Friday 28 Feb. I may have mentioned it before.

Almost by accident, I ended up on the organising team for the all Ireland event to mark the day. I’m well outside my comfort zone.

rddposter400x600

Do government Ministers need special parking spaces?

How many wheelchairs?

Drawing pins or blue tak?

Ooh, a guide dog- do we need to do anything?

Webcast or video?

Prizes for the poster competition?

How long do the speakers get?

If we have that speaker, do we need to get another one to match/ contrast?

How many people?

Have we got our press release?

Who do we need to schmooze?

Who is compiling the conference programme?

my brain

I am surrounded by lists, in an attempt to control the chaos. The chaos is not real, actual chaos. It’s all in my head.

Things are a bit through other, but are on track. Everyone knows what’s happening. Chairperson continues to work her magic, pulling rabbits out of hats at the last minute with a smile, as if that were the plan all along.

In the meantime, Spurs Fan maintains that the only way to attract my attention is to include the phrase ‘rare disease day’ in every conversation.

And after, I will sleep.