Tag Archives: fun

#expressyourselfie

Social media have transformed aspects of charity fundraising. We all know about no make up selfies and the ice bucket challenge. All over the place, charities are hoping to benefit from a viral craze in their favour, if only they knew how to make it happen.

Herself had the rare neurological condition Progressive Supranuclear Palsy. (‘Progressive’= it’s only going to get worse. Shit happens. Tough. ‘Supranuclear’= it’s the messages from the brain not getting through to the bits of the body that move, see, cough, communicate, balance. ‘Palsy’= paralysis. Overall, a progressive paralysis that we can’t do anything about. See you in a year. Bye. ) As muscles stop moving, faces lose their expression, another form of communication is lost.

herself

 

Herself died 3 weeks after this photo was taken. This was a huge effort- sitting up and dressed, ready to greet the family, to be entertained by tales of school  and impressed by new Irish dancing steps.  Her face, like the rest of her body, wasn’t doing what she wanted it to.

But my face moves. I can do all sorts of silly things with it ( except get rid of that extra chin, the pointy nose and the wrinkles). Most of us are blessed with the ability to express our emotions on our faces. We can also exaggerate, be dramatic, laugh and just have fun with those faces. Girl1 and Girl2 spend a ridiculous amount of time posing for selfies.

The PSP Association want to capture all these things in the #PSPAExpressionSelfie.

I think we can do that

 

Go grab your camera/ phone, be silly and have some fun. Appreciate the little things you can do.

Share your pictures, make all your friends and family giggle, react and post their pictures. Have fun!

 

 

To donate to the PSP Association, please text PSPA02 along with the amount you wish to donate to 70070 (PSPA02 followed by a gap followed by the amount eg. PSPA02 £2 to 70070).

#PSPAExpressionSelfie Working for a World Free of PSP & CBD – The terminal degenerative brain disease.

I’d rather be broken than empty

I’ve done more in the last two days that in the previous 2 weeks. I never quite get the hang of the ‘pacing’ thing. Pacing is all about being sensible, conserving energy, never doing too much, avoiding ‘boom & bust’. It’s really hard to do. After weeks of being fit for nothing (remember the not being able to sit up time) I was able to do things. Hurrah!

There was a major clear out of Girl2’s bedroom. Apparently nearly 12 year olds going to secondary school don’t need a cupboard full of Build a Bears and random dolls. Or the picture books her mother just couldn’t get rid of years ago. I was able to cart bags of things to the garage for the charity shop, and fill the wheelie bin with rubbish, but Spurs Fan had to lift the rest into the roof space. By the time I was done I could hardly lift my arms to the washing line. Then, too late, I rested.

Yesterday Ditzy and I  got dressed up, had lunch out and collected a charity donation for the PSP Association. Thank you, fundraising engineers. I completed the current module for my Stanford on line course, Patient Engagement Design, and complained a bit. The course isn’t quite what I thought it would be- more about designing technology to make money out of engage patients than designing effective patient engagement- but I’ll give it another week or two before having a full on rant.

Then, (yes, there’s more!) we went out. Spurs Fan and I, alone and unaccompanied. We were early, because the early oldie with a stick gets a seat. We went to see First Aid Kit in concert, and they were fabulous.

Swedish sisters with wonderful voices and sensible shoes. One with a frock and fringe, the other with endless limbs and shiny shiny Abba type trousers. We expected harmonies and loveliness, we also got hard rocking, Jack White type badass (but sort of sweet) moments.

I’ve been listening to their albums for a while, singing along in the car, or while doing other things. Last night I heard lyrics I hadn’t noticed before, and “I’d rather be broken than empty” worked for me. I’d rather recover than never try. I’d rather be frustrated than uninterested. I’d rather need to sleep than be bored stupid. I try not to be silly about it, or push myself beyond all limits, but I’m not going to lie back and watch daytime TV if I can avoid it. Sometimes that’s what I need and I retreat from the world, but I hate missing the chance to sing along. “Sing with me” they say. And so I do.

Today and tomorrow? Bed.

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.

pretty pictures

Not only did I discover new-to-me bloggers the other day, but I was introduced to a whole new-to-me world of photography. EleanorC  posted images by Gray Malin, and I fell in love.

Gray Malin’s aerial beach photography

Icebergs Bondi Beach

À la Plage, by Gray Malin.  http://maisongray.com/blog

Gray Malin - Praiano, Amalfi Coast

Gray Malin: Bondi Surf Lifeguards Triptych

Wait, there’s more…

Maison Gray | The House of Gray Malin Photography

 

Gray Malin in Antarctica. Words fail me.

Bermuda Flamingos by Gray Malin

Gray Malin

I can’t show you all the fun pictures I found; there were many. I had such fun, thanks Eleanor!

 

All Gray Malin images taken from Pinterest. If you have plenty of money, you can buy prints or other fun items.