Category Archives: Uncategorized

How I found freedom on an e-bike

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Posed by model. My e-bike is silver.

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 🙂

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Broom bites the dust in #ichallengems opener

#ichallengems
Rebecca, with secateurs

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.

Dead broom plant #ichallengems
Was the broom suffocated by ornamental grass or were the roots damaged by the fence?
broom root #ichallengems
No roots left
#Ichallengems
More room without the dead broom – space for other grasses perhaps?

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

No one is 'normal'
No one is ‘normal’
snigger
snigger

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

Alice Sebold, US writer

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sofa rage

(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.

Poo, three dancers and small boys in the Tate

The Three Dancers 1925 by Pablo Picasso 1881-1973

 

Three Dancers by Pablo Picasso, at Tate Modern

Parents with younger children should get 20-min free slots to visit art galleries. Or not so much galleries, as a couple of the interesting things inside them. That’s my brilliant thought for the weekend, having quickly visited the Tate Modern with a friend and his two boys, aged six (very nearly 7) and 4.

My friend was sensibly anxious about how his boys would behave – the youngest being lured out on the promise of buying ‘cars’, rather than meeting up with his dad’s university friends. After an appealing ‘that’s awesome’ reaction to the massive, huge, enormous, what colour is it?, red installation in the turbine hall, we needed a quick hit. I suggested Joseph Beuys ‘Lightning with Stag in its Glare’ as the biggest other ‘thing’ I could think of.

Lightning-with-Stag-in-its-Glare-Blitzschlag-mit-Lichtschein-auf-Hirsch

Success. It was ‘a mountain, with big piles of clay poo at the bottom’. That’s a definition you can’t argue with. Though it is ‘more’ than that, it is that to a six-year-old (and who can deny the poo similarity, whatever age?). He showed polite interest in the news that that the ‘clay’ was, in fact, bronze. We decided to save the wonder of alloys for another day.

Wandering into the next room, I went for the ‘what’s the best picture in here?’ gambit. Did he point at the nearest, or the best? Who knows, or cares. It was surrealist/abstract, called something to do with childhood dreams, and it was by someone I’d never heard of. What appealed about the painting? ‘It is artificial.’ Interesting… We then spent a minute spotting the faces hidden in the painting – ‘ooh, I wonder, what’s that white shape there..?’ I mused. ‘Oh, do you mean the hand shape? I think that’s a hand.’  I felt excited when I spotted the cat.

Then it was ‘that’s by Picasso he was from Spain’ (They can learn artists like dinosaurs I reckon).  And yes it was, Picasso’s Three Dancers. There’s one lady dancing, another lady sitting with her neck like this – demonstration – and another one just standing on one leg. I had to guide fingers back from the picture at one point, but it was good to stand very close and look very hard at the black line that marks the bottom of the doors, and I realised, really gives the impression that there is something behind them.

And that was it. After less than half an hour, we were all heading for exit, hugs and must -speak-soons.

Smaller children can ‘appreciate’ art – on their terms. Wailing toddlers being pushed or dragged round the ‘big exhibitions’,  frazzling themselves, their culture-starved parents and everybody else who has paid,  are probably having less fun, and being less enlightened, than they would be in a supermarket. So, give them just a little while to look at one or two pictures, and ask them what they think. The great thing about art is that there are no wrong answers, just lots of chances to describe what you can see.

And the ‘maintaining cadence with ms’ message in this? It reminds me that all the little bits are worth it. I was no more up for a two-hour gallery tour than those little boys, flagging after a fun morning of walking and talking. I really, really enjoyed looking properly at those three things. So if I need to take on the Tate a bite at a time, so be it.

 

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The ‘awesome’ sculpture by US artist Richard Tuttle in the Tate Modern turbine hall.

 

 

 

 

Pizza anyone?

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.

Why you should know The Possibilities are Endless

 

 

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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

 

Review 30: My favourite things

John_Coltrane_1961_My_Favorite_Things

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…

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Review 28: 20k on 25 Miles

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Northern Soul
Nominated by Ian McMurtie

Dammit, I could leap in the air and do the splits. I could jump, spin and flip and bounce back up off the floor.

I walked 20k today, for the MS Society walk from the Cutty Sark to Battersea Park. And I was propelled by listening to Northern Soul music on the way in.

The soundtrack to the film Northern Soul isn’t available on Spotify yet, so I picked a few tracks to listen to. If you don’t know about the Northern Soul phenomenon, check it out. ‘Heavy beat, fast tempo of the mid-1960s Tamla Motown sound’, which spawned a remarkable dance culture in venues such as the Twisted Wheel in Manchester and Wigan Casino in the early 1970s.

So many artists – many little known tracks were rediscovered. So many moves – true, some of the acrobatics were helped by amphetamines, but you can’t fail to be impressed.

Running out of time before I collapse into a well-earned G&T, so my main, big Northern Soul plug is Edwin Starr’s 25 Miles. He was so full of enthusiasm in all of his songs, and this is superb… watch out, I’m gonna go for a move….

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Review 18: You make loving fun

rumours-2

Rumours
Fleetwood Mac
Nominated by Sally Dickson

Rumours is a great album, packed with hits. I’m a bit cynical,  always thinking ‘it can’t be that good’ but I really enjoyed listening to this.

Many of the songs are  well known hits in their own right  – Go Your Own Way, Dreams, The Chain, You Make Loving Fun – so it was good to hear them as an album, building up the intensity. And I really sang along, big style. It may be a bit ‘middle of the road’ (ie loads of people like it) but it’s very accomplished.

It reminds me of my FVSB (first very serious boyfriend), who liked Fleetwood Mac because his dad did. His dad was an electrical engineer in the Navy, and their house was full of fantastic (and fantastically safe) wiring. There were speakers built into the bathroom, and I remember sitting on the loo (or the ‘head’ as he called it) listening to Stevie Nicks.

So I think these songs were well embedded, waiting to be released. And they have been.

‘Sweet wonderful you, You make me happy with the things you do’

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Review 17: Waitress in a cocktail bar

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Dare
The Human League
Nominated by John Bergman

The Human League were my first taste of glamour. I remember watching Don’t You Want Me aged 11, and thinking the women singers were just so cool. Fascinatingly, frighteningly cool.

That waitress in a cocktail bar knew she’d find ‘a much better place, either with or without you.’ So dismissive! So brave! Being ready to do without one of those ‘men’. But so dangerous… ‘You’d better change it back or we will both be sorry,’ (sounds a bit childish now). A brilliant psycho-drama for a pre-teen to get stuck into.

Phil Oakey was a bit ‘fanciable’ too, though I remember being unsettled by his fringe. I was a strange child.

It is deceptively simple music. It sounds sparse and simple to pick out on a keyboard. A few synths, a drum track.  But the effect is impressive. Oakey’s voice creates the drama and tells the story. Easy when you know how.

There are deserving hits on this album – Open your Heart, Love Action, Don’t you Want Me – and the other tracks are interesting too. I am the Law and Seconds stand out.

And it’s got another one of my very, very best lines, in Open you Heart. 

‘But if you can’t stand the test, you know your worst is better than their best.’

And you can catch them at the Hammersmith Apollo on 6 December! Phil still looks fanciable, and better without the fringe I reckon.

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