Tag Archives: friends

a sense of enormous well being

I spend most of my time at home, resting. I have plans that I can’t quite follow through on. I don’t have to do a lot to feel very busy & the littlest things wear me out.

So I take great joy from the odd time I can feel like a normal person, when a plan comes together, when I can just go and do.

I wasn’t looking forward to the day out. It had involved organising and gathering  and missed deliveries. There was a handover in a wet car park at night, while Girl1 danced a jig inside. The weather was horrible, the drive would be long. Getting there and being sociable would be challenging enough, but then I’d have to drive home again.

Imagine Spurs Fan’s surprise when I floated into the house after the return trip. Delayed by road works and heavy traffic, I’d missed being able to lift Girl2. They were expecting grumpy-don’t-speak-to-me Speccy, but I was bouncy and buoyed. Nothing like a bit of unpredictability to keep my loved ones guessing.

It had been a fine, bright day. The journey west contrasted sharply with the last time I’d made it on my own, in the middle of the night, willing my mother not to f****** die until I got there. (Unusually biddable, Herself stayed with us another 10 days, giving us all time to get there, to be with her and enjoy each other’s company.) Yesterday I could see for miles, the trees still had some beauty, and my heart lifted as I saw the town from the top of a hill.

I spent some time with HH, dropping off the t shirts, the big bucket, leaflets, a pull up banner and the freshly stickered brand new collection tubs. Tonight, she is celebrating, and taking donations for NIRDP. Isn’t that a wonderful, generous thing to do? We only know each other through social media, we share stories of dodgy health, much missed mothers and supportive families, and she thought of sharing her event with our charity. Properly awesome.

collection boxes

I stayed chatting longer than I’d intended, and probably longer than was good for either of us, and I went exploring the new road. All sorts of major archaeological discoveries were unearthed by the road building, but I saw the mundane roundabouts, cut aways and bridges- and look, our house! Reader, I went home.

I drove up the hill and paused outside where we’d all lived for years. Where The Old Man and Herself were so very happy and where the Brother, Mutt and I grew up. I had a wee moment of ‘ahhh’, and then- yes, there’s even more normality-I called in to visit a neighbour. More chatting and catching up, many smiles and surprises, more loss.

The journey home wasn’t so fine. Long delays and random road works. My happy cosy adrenaline buzz kept me going.


Today is another story. It’s 3pm and I’ve just been able to get up. It may not last. It could be days before I leave the house again.

It was well worth it.


and off she goes

The garments are labelled. The tie is tied. The blazer feels itchy on her neck.

My little one is off to big school, with butterflies in her tummy and her shoulders tensed up to her ears.

Girl2, school uniform

Nobody else from her primary school is going to the same school, but that is not a concern. Thanks to dancing and sport and the miracles of social media (“I’ve got a new friend who’s going to my school tomorrow too”), she knows loads of people. By now she’ll be getting to know her new class, her form teacher and the ways of the new world. By home time she’ll be exhausted but buzzy. A restorative cookie is planned.

Girl1 is almost as excited. She has shared many words of wisdom (“Don’t bring your school bag into the dining room.”, “Do your homework the day you get it.” I’m still smiling at the latter…) but will probably not acknowledge her sister when through the school doors, or on the bus. She doesn’t start back until tomorrow, so made sure to lift Jake up to the window for waving this morning. A dog’s life, indeed.

And so the world moves on, full of fun and learning and friendship. We’d not want it any other way.

12 August 1994

A dry day, a white Rolls Royce and a country church.  A hotel by a lake. Family and friends cleaned up and dolled up. We all had jobs to do.

The Brother had to keep his hair in place, Davy B had to look after Herself. Lorraine was reading, J & S had to carry things, while the Incredible Singing Cousins were out in force. H and Dawnriser had to wear shiny frocks and pose beside me. I got to be the bride.

wedding, 1994, big hat, uncle, aunt, granny, mother, brother, bride
bride, family and hat


A lot has changed since then. Herself and Lorraine are gone, as is the Brother’s hair. Others have left us, some are unwell now, others still we hardly see.

Long gone, too, is the marriage that brought us all together. We grew apart, fell apart and lost our way.

20 years on we are not what we might have been. But we re-found our friendship. We managed to remember that we cared about each other, before we lost it all.

A wish for our spouses, children  and all of our families and friends…


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.