keeper of all the secrets

You can tell me anything.

I’ll not repeat it. Honestly, I’ll not tell another soul.

Of course, it’s not that I’m wonderfully discreet; I simply won’t remember.

My good friend, Kileen, cannot remember a face. I’m always hazy on details. Between us, we can cobble together a version of our social lives in the 80s and 90s, amidst squeaks of returning memory and much  hilarity.


There have been times when I was told deep, deep, never to be repeated secrets. I buried them, and when, months later (as is the way of great melodrama) I was allowed to talk of such things, I’d genuinely forgotten I’d been told. It was usually the experienced Kileen who helped me pull away the layers and remember that I knew the information. Delayed gossip is even more fun.

The brain fog that comes with my ME has added to this natural tendency. I’m pretty sure I never hear gossip any more, but I assume that comes with the intervening 30 years. Now it’s important, useful things I forget. Phone calls and chores get overlooked until they become overwhelming. If only I could make remembering to iron a priority worth remembering.


Girl2 had a birthday a few weeks ago. On Sunday, Spurs Fan found a parcel addressed to her, carefully hidden in a drawer. It had been there for ages. A wonderful birthday present from Scotland, which had arrived well before the event. I recognised it, vaguely. Silly old mummy.

Yesterday it was Spurs Fan’s birthday. Nana and Grandad send presents in advance, but there was no sign of anything. All the drawers were checked. Nothing. Cards were definitely sent. The drawers were all pulled out. No, definitely not arrived. I thought to check my texts. On 24 November, I’d texted Grandad to say cards had arrived. Oops. That meant I’d hidden them, and had no recollection at all of ever seeing them.

Wardrobes, cupboards, in the ironing pile, through the hiding Christmas presents. Spurs Fan found them under the stool at my side of the bed. Your guess is as good as mine.

Nana and Grandad were distressed that their careful planning for their wee boy’s birthday seemed to be for naught. Spurs Fan was stressed at the searching and the reassuring. It ended well, but there was no ‘silly old mummy’ last evening.




Until we exploded with laughter, paused the TV, and each of us wiped tears from our eyes. Four of us in stitches, one of those perfect moments of synchronicity. The TV ad had just announced “Nothing’s ever lost until Mum can’t find it”.

Not in our world.



Links to all images on Pinterest




When I saw #brainfogmoments a few days ago, I couldn’t resist. So many things to add! Of course I couldn’t remember most of them, but let me give you a flavour of my week as reported on twitter…

  • went to take photographs- found pics already on camera
  • took 11 weeks to count 47 items
  • discovered hair straighteners already on
  • stepped out in front of car yesterday
  • putting face cleanser cream on wet hair rather than ‘hold the curl’ cream

See, I live a life full of little surprises!

(and a fair bit of anxiety)

not readynap getoverit


The hashtag seems to come from @theslowlane_ME

Links for the pictures can be found here.

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?


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.