feeling the buzz again

After months of busyness and exhaustion, I’m beginning to recover. Maybe it’s the prospect of long days in the middle of nowhere, or family time with Nana and Grandad. Or maybe it’s dancing free weeks ahead. Whatever the reason, I’m chuffed to feel the space, to consider that I can use that, to feel that all my energy isn’t being subsumed by just keeping going.

Today, tasks seem like a bit of work, rather than enormous, shapeless mounds which defeat me as soon as I think of them. I’m going to apply for a part time job. I don’t expect to be considered for it, But I’m going to apply anyway, because I think I’d be great for the organisation. (Where did that confidence come from? I hope it stays.)

I’m going to figure out how to be organised. Rumour has it that nifty apps make that easier than I’d think. I just need to learn how …

I’ve had plans, for far too long, to add all sorts of patient information and rare disease information to the blog, so I know where I can find it. That would teach me how to curate content, which is apparently a good thing. I can do that.

I even applied for a bursary to go back to the summer school I was at a few years ago. Memoir, poetry, talks, drama- how exciting would that be?

Our book club recently read Station Eleven, by Emily St John Mandel. There’s a lot to like about this book- don’t let it’s partially post apocalyptic setting put you off- but I particularly enjoyed how Shakespeare and music continue to survive and enhance lives. There is humour and empathy, murder and broken hearts. There are lists of what’s lost and a museum of the pre apocalypse mundane. There is a wonderful reference to Star Trek Voyager, as the motto of the Travelling Symphony is ‘Because survival is insufficient.’

I like that sentiment. I want to do more than simply survive. I want to have fun and be inspired. I want to connect and challenge. I want to learn new things, and share the things I already know. I want to laugh on beaches and cry in chapels and snuggle on sofas (or any variation on those). I want to spend time with my people and have little adventures together.

We know that my ME means that my grand plans may stay as simply plans, but we know also that I like to mark the good moments, to remember that behind the added weight, the pyjamas, and all the snoring there are times I feel like myself. That’s always worth celebrating.

keeping up with Michaela

Michaela Hollywood is a 25 year old whirlwind. She has a first class degree and is finishing her masters. She writes beautifully, creates podcasts, connects people wonderfully on social media, and is a huge music fan. Also, pizza. She can do anything, and gather the support of politicians and celebrities to do it. She has won all sorts of awards, had articles published the Guardian, the BBC and others,  and, somewhat less prestigiously, I’ve re-blogged several of her posts. She’s fun loving, highly motivated and a bit of a medical miracle.

Michaela lives with Spinal Muscular Atrophy, a type of Muscular Dystrophy. Her elder sister, Martina, had the same condition and, I gather, the same sense of fun and determination. Martina died when she was 14. Many children born with SMA do not live even that long.

Michaela does nothing by halves- a hospital stay that lasts months could be down to previously unknown in humans bacteria, a chest infection causes all the concern, and the expertise of her family has saved her life. So when she decided to do a thing, some sort of a thing, to raise awareness of Muscular Dystrophy, and funds for the charity Muscular Dystrophy UK, I didn’t really expect the thing to be a raffle or a cake sale. Nowhere near dramatic enough.

Instead, she did a marathon. 26.2 miles round the streets of Belfast yesterday, surrounded by friends and family- a blur of orange. The McSpecs planned on joining in for part of the journey, so we walked uphill to meet her. No sign. We loitered a while and then decided to walk the route anyway- #MovingaMileforMichaela if not actually with her. We pottered along, chatting and exploring, noticing those surrounding that we normally drive past, oblivious. Then SpursFan and Girl2 took off, running. Running towards a van, a crowd and a motorised wheelchair. Michaela was so far ahead of schedule, they’d managed a pit stop for tea.

found at: http://www.newsletter.co.uk/news/health/michaela-achieves-life-dream-of-conquering-marathon-1-6809691
found at: http://www.newsletter.co.uk/news/health/michaela-achieves-life-dream-of-conquering-marathon-1-6809691


Well, you know I don’t run. I’d been walking and was ready for bed, but added an inch to my step. Whoosh! No, it wasn’t enough. Who knew a motorised wheelchair could move so fast uphill? I only caught up with her when the police escort paused for complex right turn. A quick hug, a photo, and a handover of the collection bucket I’d acquired along the way, and they were gone again. Up another hill, in the rain, determined to complete the task.

I got home, hobbled up the stairs and slept for hours. Eventually, girls came in to wake me up with a colourful shopping list, giggles and squabbles. As is the norm, many pics were taken. (This used to baffle me, but now I quite like the recording of the ordinary little moments of togetherness.)

Today, as I read the local press on Michaela’s marathon, I was struck by something I suppose I must have known, but never realised. Michaela has power only in one hand.

What disability?

people and problem solving

Jake and I are home alone most of the time, resting, making cunning plans, and doing what doggies do. Crowds and chaos overwhelm us and we retreat.

But, beneath it all, one of us is quite sociable. I have loved the celebrating. Making a point of gathering friends and family together (not in my house- neither of us could cope with that) spending time just being, chatting about music and nothing, enjoying a little silliness.

There have been events on all the volunteering areas of interest- PSP support groups, a human rights report launch, an ME event, rare disease scheming and a neurology patient/ carer group. Spurs Fan has lost track. I do try to balance things out, largely by resting for days, but when I do too much my brain turns to mega mush, and I’m no use to anyone.

I think I’m coming back to the world, but I’ll be spending large amounts of today and tomorrow at an Irish dancing festival (of course I am, pesky wonderful enthusiastic cheerful kids) so this may just be a blip. This is the competition run by our dancing school, so I’ll not get away with simply being  encouraging and clapping at the right time. I’ll have a job, involving money or hot water.

In other news, I’ve spent ages trying to find the pics to add to this post. They are on my phone, but have failed to make the journey to any of the folders on the laptop, or to the mysterious cloud. I may need to email them and then download, but that seems remarkably convoluted. This hasn’t been a problem before. I wonder did I do something?

It’s good to be heading out with a clear head, ready to be useful and problem solve. If you’re coming along, check your change. You may pour your own hot drinks.

no longer middle aged

“Once you get to fifty you become young again.” said the friendly GP, “Young to die.”

I told him I might need to change practice. We laughed, but I knew what he meant.

I realised recently that I remembered clearly the 50th birthday of each of my parents. Each day was defined by the old man’s health. On his birthday, he went to hospital for a minor procedure, which became major surgery, Christmas on a protein drip, and a cancer diagnosis. Two years later he was in a different hospital, pleading to get out for a few hours to help herself celebrate her 50th. That didn’t happen. The old man was young to die, at 52. Herself was still young to die, at 68.

Many of mine are long lived, but nobody has reached a century. I’m past the middle.

So we gathered together, the Belfast based McSpecs and the Scotland based McSpecs. We swam and lounged and laughed. We walked and ate and looked around us at loveliness. Children played, bounced on all the beds and had adventures with a golf buggy. We went to bed at a reasonable hour  and were dressed, sociable and devouring cooked breakfasts by 8.30 am. Eventually we had to come home to an eccentric dog and real life.

In a few weeks, there will be no sedate loveliness, or early bed. There will be a wee room, a bar and a dance floor. Spurs Fan is compiling a playlist. There will be a gathering up of friends. There may be silliness.

Family, friends, togetherness, celebration- what’s important in the world.