celebrating and connecting

I was exhausted and looking forward to time in the Great Wilderness of the West (a remote caravan site on top of a Donegal hill). We’d lie about together, play board games, explore beaches and generally chill out. We’d also investigate various hostelries for a few moments of internet access. I blamed the children…

I could have stayed in the caravan for ever, but it was time to pack up for the winter. Spurs Fan and Jake came home, surrounded by bedding and laundry. The girls and I moved into a hotel with a swimming pool and heat. We were at regional Irish dancing championships, and I didn’t have to drive anywhere. I could relax, and reconnect with the outside world. There were hundreds of dancers & hangers on, all of us looking for wifi. Ok, some were looking for good performances and medals, but everyone wanted wifi. It didn’t work.

I was full of excitement and disbelief. After months of delay, the NI Rare Disease Implementation Plan was going to be launched. We’d been working and lobbying and gently encouraging. I’d resorted to a little twitter nagging. The occasional Health Minister was studiously avoiding his constituency office, in case Ditsy was still there, waiting to talk to him. I wanted to shout it from the roof tops. I wanted to jump for joy. We were being listened to and involved. Huge steps forward for rare disease in NI were being announced.

And I was miles from home, with dodgy internet access.

Late at night, I saw a picture of Chair, the Health Minister (back to full time), and one of our friendly neighbourhood geneticists. Not only do we have a plan, we’re getting a Genomic Medicine Centre, a fantastic resource for speeding up diagnosis.

christine, simon, shane

“It’s happening, it’s happening, I must send a message… oh, internet down again.” I was so excited, and had nobody to share it with. The other mums nodded politely as their eyes glazed over. The girls said ‘that’s good’ and went back to practising clicks and jumps and being fierce.

By the time I got back to reliable internet, my brain was too fogged to think, or communicate, or to read anything.

Eventually, I will makes some sense of what lies ahead for us. In the meantime, a little kitchen boogie is appropriate.


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?

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