I love my e-bike because it gives me freedom. On my lovely Kuo A2B  Plus I can freewheel down hills with the wind in my face, and then fly effortlessly back up them feeling just a little bit smug.

I’ve got multiple sclerosis and so getting around can sometimes be a challenge; my legs can feel heavy and painful, and my walking gets slow and wobbly.

Exercise is important to keep healthy and happy with MS, and to manage the ‘need-a-nap-now’ fatigue which is a common symptom.

I don’t have to use the car, or wait for a bus, or walk when I don’t feel up to it

Living in North London, all my routes home involve either a short, very steep hill, or a very long, slow hill: my e-bike has made this final part of a trip to the shops much less daunting. Actually, it’s made it fun. I can go faster the closer I get!

I don’t have to use the car, or wait for a bus, or walk when I don’t feel up to it.

I’m using it to cycle to the swimming pool and gym four days a week, rather than driving (Just need to jog up and down the garden for a mini-triathlon).

My new bike lessens the fear of my body’s battery running out of juice on the way home

MS is unpredictable, with symptoms changing daily. On good days, I can test myself with the e-bike by keeping the power-level low; let’s try this hill on two instead of three today, or some of it at least.

On other days, I can give myself a break and knock it up to five; no pressure required, but still some valuable exercise.

My new bike lessens the fear of my body’s battery running out of juice on the way home – as long as I’ve remembered to charge the bike’s battery .

And I can be the speedy kid I never was, regardless of MS, and again, that’s fun.

The extra boost lets me pull away from junctions quickly, safely and with confidence

The extra boost lets me pull away from junctions quickly, safely and with confidence, and the weight adds stability stability. A slow-and-steady approach is needed when moving the bike, and removing the battery for charging.

And e-bikes have meant my lovely partner Ben and I can cycle together again: I struggled on my traditional bike and he’d be stuck perpetually in granny gear as I tried to catch up. It made me feel very grumpy.

One go on my bike infected him with the e-bike bug and now he’s commuting several days a week on a very smart Moustache.

I felt triumphant after we made a return journey to the Queen Elizabeth Olympic Park together last weekend – with a break in Westfield Stratford City, which has a proper bike park.

It was incredible to travel that far under my own steam

It was about nine miles each way, with some tough hills, and a glorious stretch along the banks of the River Lee Navigation.

Not a huge distance on a bike, you might think, but for me it was incredible to travel that far under my own steam – with just a little bit of help from the battery.

We bought our e-bikes from the friendly folk at Fully Charged, who I’d recommend if, like me, you didn’t know where to start.

Meet my business alter ego at thomasediting.co.uk 
Ok, it’s just me, writing about words rather than MS 🙂

I’m going to fight MS with a pair of secateurs. Take that, progressive incurable disease. Snip. Begone monster relapse! Snip…

I don’t think there’s much point ‘fighting’ a non-sentient medical condition. I do think there’s a point in trying to raise money for research into treatments and a cure.

So I’m challenging myself to do ‘something in the garden’ for the next 30 days, and share the results. I’m having a relapse which is leaving me unable to do very much for more than about 25 minutes before things get very wobbly and I feel sick. But 25 minutes is time worth spending in the garden and we’ve got to put it to bed.

The broom bit the dust yesterday. I think it passed over a while ago but I hoped the twigs would come back to life.

(I haven’t mastered image sizing and alignment yet)

I like gardening — it’s a place where I find myself when I need to lose myself.

Alice Sebold, US writer

(TUT – I didn’t mean to post this. Looking for save on the iPad… will tidy up in the morning) 

I tried and failed to put a throw on our sofa this evening. It is an (make ?) which we have been planning to tart up with seat covers for, oh about five years. The cover is a heavy cotton double bedspread, which had just had its biannual wash to remove the cat hair.

Could I fold it in half and tuck around the cushions? Could I heck. It behaved as though it was slippery, in my hands. This corner to that corner – simple enough but I couldn’t make it work. I could get the corners together but then had no idea how to control the rest of it. It should have just happened – I have been folding things for years now (honest mum) and the muscle memory should be strong – but there was an infuriating gap between what I wanted to happen and how I could achieve it.  I felt like a four-year-old having a go at putting a cloth on the table for teddy’s tea party. I realise that i’m not being ‘silly’ and just can’t work it out. Going for the ‘this will have to do approach’ – I dropped it on and asked Ben to do it for me. I know what tidy looks like (honest mum, I have changed).

Our minds are very clever – it’s like magic, all the things they allow us to do without realising quite how we did it. Treasure those domestic chores. They are all things you have learnt to do and can do without conscious thought. It is like being a virtuoso pianist or professional footballer – why the hell not? I am learning new habits – to slow down and pay close and constant attention. Say the names of the items as I load and unload the dishwasher to help them go in the right place. And never have a brilliant idea or satisfying realisation when holding glassware or crockery – the brain surge will direct attention to that rather than my hands. Crash! Tinkle!

Mindfulness is great – but it doesn’t help with the sofa cover. It is trivial task -but the trivial tasks not achieved are those that build up the most frustration and negative thinking. I could do it (though admittedly mum, probably never brilliantly). For now, I can’t.

I must be feeling better. Made pizza for the first time today and trying to cope, in an adult way, with the fact it’s gone wrong.
Five- year olds make pizza on tv – it’s an easy introduction to cooking. I watch my deep pan horror swelling in the oven and wonder where I went wrong. I blame Jamie Oliver, whose ‘easy pizza dough’ I used.
Nigel Slater, sound as a pound, never goes wrong. Whereas Jamie is a little bit ooh, a little bit arhh… A bit how much flour do I need to add?
I had to ‘Knock it back’ from a liquid to a solid…
Ah well, we can pick the bits off..,
Let’s remember the good thing was I was motivated to give it a go. And I’ve
been swimming today too.. And Ikea (the pizza was a thank you to Ben for building the chest if drawers)
Not ‘better’ – never ‘better’ as such – but feeling better. It is a subtle reawakening of the mind, of the desire to just ‘do’ without making an effort all the time. Still need my naps and rests and ultimate caution handling breakables, but feeling better. And that’s nice – hope does spring eternal.

The Possibilities are Endless is a beautiful artistic documentary about musician and singer Edwyn Collins’ ongoing recovery from two major strokes.

To nick the film’s publicity blurb, it is ‘a hymn to happiness, directed, gorgeously, by Ed Lovelace and James Hall about Edwyn. About finding his way back to music, to life, to understanding’.

And it does look and sound gorgeous (Edwyn wrote the soundtrack without seeing the film).

We saw him at the UK premiere at the London Film Festival earlier this week (sounds posh, you just buy tickets). His great wit and sense of mischief were certainly there, but his problems with walking and talking demonstrate the damage a cerebral haemorrhage can do.

As the lead singer of Orange Juice from the late 70s, he had some big hits – Rip it Up being the biggest – and then a successful solo career. And he was a live wire, full of  charisma but loveable and intelligent with it – when I say ‘was’ I mean still is, it just isn’t so obvious.

He has aphasia – damaged speech due to a damaged brain – though more than 10 years of effort on his part has brought him from his first waking phrases, which were ‘Grace Maxwell’ (his wife’s name) and ‘the possibilities are endless’ (which his wonderful wife pointed out is a lot less profound when someone says it 80 times a day).

About 152,000 people have a stroke every year in the UK, and this film shows the consequences. And Grace made it clear that they were more fortunate than many people affected by it.

It made me think, there’s a whole load of people out there who might be dismissed as drunk or a bit ‘odd’ for the way they walk or speak or fail to remember. A whole load of people who are working hard to keep going, and to get as better as they can.

Please watch and share – it is more than your usual documentary.

Though Edwyn (and Grace) made it clear he didn’t want to be a poster boy for any charity, he did mention one that he supported – which of course I can’t remember!

So try out:
Connect
Speakability

(I’ve tweeted asking for the name – I’ll add it if I find out!)

And for full details about stroke, see The Stroke Association

John Coltrane, Art Blakey & Miles Davis
Nominated by Jason Penn

John Coltrane on soprano saxophone,  Miles Davis on trumpet and Art Blakey on drums – what a band! That would have been something to see.

Mr Coltrane, on My Favourite Things, is fierce. Art Blakey is infectious rhythm and Miles Davis Relaxing is just cool.

I like jazz – I allowed myself to like it by not taking it too seriously. It creates an Etch-a-Sketch image in my mind’s eye, with the slender line jumping up and down, making lovely ellipses, and some jagged lines, and some softly wiggling ones too. And it can get a bit
3-dimensional too. I can’t sit still, it makes me smile and feel, well, groovy.

I think of Martinis, and looking and feeling smart, and bars with everyone just enjoying the music, all blissfully lost together in the mood. With the relaxation only interrupted by bouts of clapping, as one player finishes their part and hands over.

It’s a form of meditation, demanding enough attention to take you away, while rewarding you with surprising melodies and riffs. I’m so impressed by it.

As I have been impressed by everything I’ve listened to in the past 30 days.

True, I’ve found it harder to honestly ‘enjoy’ some artists than others but I respect their talent. ‘Liking’ is a reaction that’s impossible to control – it happens in a synaptic flash that you can’t decide or control it. Music is love at first sight.

So, while I sit here and bob along to Miles, can I say it’s been a challenge and a great, great pleasure to listen to and think about the music that means something to you.

My ability to critic the music itself has found it’s limits and I’ve shown my love of lyrics that make ‘sense’. Tell me a story, and let me sing along. Maybe jazz lets me write my own words to a musical adventure.

Thank you very much, I hope you’ve enjoyed it too.

Lifting the needle from the record for now…

#Ichallengems