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.


distraction techniques

It’s still holiday time around here, but lots of rare disease events and discussions are planned for the next few weeks. These few days would be a good time to get ready.

Tie up all the loose ends, ready for the onslaught. I could learn about scheduling tweets. I could get that page of e-patient information ready. I could count all those coppers, and claim some expenses. I could re read the big document and prepare more of a response.

I could do lots of walking, dust off my weight watchers stuff and start counting points.

So, instead I stayed in bed late, reading. I decided to play with the blog, and now I don’t know where the pages have gone- where would I put the e-patient info even if I did gather it?

Ah, but look, random header pictures…

Never venture into Pinterest bloggy buddies. It’s too late for me, but save yourselves. For some people it’s a source of craft ideas or mummy guilt, but I have no such notions. It’s a glorious, pretty, funny, waste of time.


I may get back to worthy things eventually, but I’ve a clean onesie to get into and silly pictures to get lost in. See you on the other side.

the little things

Yesterday was a dozy day. I tried getting up, but retired defeated, after eating. Eventually I showered, put on clean pyjamas and made it as far as the sofa, accessorized with hot water bottle and little old lady rug over my legs.

Today was to be better. I had plans. But time has this habit of vanishing. It’s lunchtime and the cupboards are not cleaned, the ironing isn’t done, tasks from 6 weeks ago sit on the table, shaming me. There are things to be doing, but I’m faffing on the internet. In my dressing gown. If the sun shines I notice the grubby windows. I brought a cake stand to a coffee morning on Saturday and it needed a good clean before we could put the buns on it. Luckily, I’m not proud- I wasn’t remotely bothered when I could have been mortified in front of the Irish dancing mummies. (I’d never cope if I was a competitive Dance Mom).

When I wasn’t doing any of the many things that I need to be doing, I read Emma’s post and recognised the feelings. You probably do too.

Then, on twitter, a moment of sanity. Words of wisdom from @SharonOwensAuth- housework all on one day, another day for writing, a day for other things, time to do nothing at all. Sometimes we just need somebody to point out the obvious. Little steps to make the chaos a wee bit more manageable.

from: http://thebookhabit.blogspot.co.uk/2013/08/monday-musing_12.html
from: http://thebookhabit.blogspot.co.uk/2013/08/monday-musing_12.html

pace yourself, woman dear

For those of us with limited energy, careful pacing is an important self management technique. Properly used it should help us cope with ebbs and flows in energy, by planning what we can reasonably be expected to do, and then resting. Building up, in teeny steps. Plateau. Build.

I’ve bought the books. I’ve read the leaflets. There are useful websites, and maybe even an app. I’ve spent time learning, with occupational therapists and at home.

Pacing is not about going flat out for a few days because something is ‘necessary’ or ‘interesting’, and then spending the rest of the week (if lucky) in bed.


Why can I not remember that?

Ah, well that’ll be the brain fog, forgetting that I need to pace.

On the other hand, that’ll be the curiosity, the mind sparking, the not wanting to miss a moment of what’s going on.

Me and ME- unpredicatable, unreliable and a joy to live with. Isn’t Spurs Fan a lucky chap?

image from pinterest