Monthly Archives: August 2014

Music was my first love …

August 31, 2014Fundraising#Ichallengems, fundraising, musiccambricus

Music was my first love, and it will be my last.
Music of the future, and music of the past.

To live without my music, would be impossible to do.
In this world of troubles, my music pulls me through…

STOP! Fine principles but that’s not me, it never was.

I’ve been a careless, vicarious music fan, latching on to the likes and loves of best friends and boyfriends (and the music died with the relationships).

I enjoy it music. I find it moving, exciting, fun. It is good for you, without a doubt. And I love singing along – damn, I’m good at that. But left to my own devices, I can just forget to listen to it.

It’s got a bit worse since my MS diagnosis. Maybe I’m thinking ‘I can’t be seen to be enjoying something, not now. Got to keep the chronic-illness-victim facade intact. Must be serious’. How puritanical. How noble. How utterly wrong.

Or sometimes I don’t want to listen to something that might make me cry. There’s been a lot of emotions swilling around and they’ve been liable to spill out on the slightest chord change. And I need to keep distractions to a minimum if I’m feeling cognitively challenged and music can feel like uncomfortable noise.

But that’s changing in September. Music’s coming back, with a vengeance, because #Ichallengems by listening to a different album every day of the month, and reviewing it.

I’m inviting colleagues, and anyone else who knows me, to suggest their favourite album. If I’m not already a fan, I’ll give it a go and publish my efforts here.

The final word goes to Vanilla Ice… ‘All right stop, collaborate and listen…’

There’s no calorie-free Welsh cake for chronic illness

August 23, 2014Daily life, Fundraisingchronic illness, fundraising, weight gaincambricus

My great-granddad Pop was a kind man who encouraged me and my sister to have a treat after we’d been out playing on the beach.

Taking off our matching anoraks in the snug middle room of his and Nan’s Tenby cottage, we’d be told ‘Go on, have a Welsh cake’. And there would be a plate of freshly made Welsh cakes to enjoy. With butter, yum. Sometimes it got a bit tricky. Pop would be insistent that we enjoyed more cakes, while Nan, from the kitchen, would shout out ‘DON’T spoil your tea’, in a warning tone that seemed risky to ignore.

I’ve internalised this call and response from 35 years ago. Nan saying ‘stop, think’ when I reach for food. Which is handy with MS, because – as with any chronic illness – there are so many times when I feel I ‘deserve’ a treat. Sometimes I fight the urge; many times I give in.

Hospital appointment that used up four hours in travelling and waiting? Go on, have a Welsh cake…

Weekly injection of Avonex. Aren’t I brave? Go on, have a Welsh cake…

Just making it through a day at work and getting home… Go on…. you get the picture.

Unfortunately, there are no calorie-free Welsh cakes, chocolate eclairs, ice-creams, peanut butter sandwiches, or gin and tonics (though, as a fat-free 50 calories a measure, spirits have their place. Of course, staying Drinkaware).

Comfort food hits the spot better and more quickly than any ‘why not spoil yourself with a relaxing bubble bath and a few scented candles’ alternative.

But nobody said life was fair. For me, being overweight would add to the MS burden, so I’m trying to avoid it. Fatigue and problems with walking can make it harder to be active – and it’s even harder to be active when you’re overweight.

So in the meantime, someone, please invent a special harmless treat for people with chronic illness – Go on, you know you want to.

I’m posting early this week because we are off to be the ‘support car’ for my big sister Laura Wright on her 100k Isle of Wight Challenge walk this weekend. She’s setting off about now and I wish her lots of luck, though if anyone can do it, she can.

She was the one who clambered up the cliffs in Tenby, while I assessed the risks from below. She’d always be ahead on the path, disappearing into the distance at speed, in pursuit of the next adventure. When her mind is set on something, it gets done, and always with care and without complaint, however tough the challenge.

She is raising money for Diabetes UK, a great charity for another chronic condition, where Welsh cakes have to be very strictly rationed.

You can donate via Just Giving.

Getting lost in a good book…

August 17, 2014Daily lifecognitive, symptoms, visioncambricus

I don’t remember not being able to read, or finding it anything other than fun. I was a lucky child, always happy with a book.

So it is annoying – I mean really annoying – that I struggle to read books for pleasure now. Reaching out for a book has lost its appeal.

I can’t follow a line of text automatically. I see the whole line, the whole right hand side of the page even, all in one slippy jumble (as with many MS symptoms, this is tricky to explain). Bigger writing is better because there are fewer words to focus on, not because I can’t read small print. (I’ve got glasses, but only for screen work).

It is a loss of discrimination, I suppose. I don’t know if the problem was caused by a bout of optic neuritis or damage to some scrap of neurons responsible for following text (it will be the size of a pea, under my left ear, no doubt).

Some days are better than others and, luckily, reading on a screen is much easier; there is a stronger contrast and I can make the text bigger. And we scan, rather than read, words on our desktops, phones and iPads.

It’s been sneaking up on me, subtle, nasty symptom that it is. Before my diagnosis, I didn’t understand why I was failing to finish book after book, because I wasn’t ‘enjoying’ them. I felt a bit dim to be honest.

So now I’ve worked it out, I’m trying some solutions.

Don’t get me a book token – get me an Audible voucher! I’ve been devouring audio books. With a good narrator, it can be wonderful story-telling and I imagine the characters and scenes with a vividness I don’t when reading. I can get lost again.

And, to be more prosaic, I’m trying out a bar magnifier from the RNIB shop. It is a slinky perspex rod, with a built-in guide line, and it’s helped me read newspapers comfortably for the first time in ages. It is most effective on the flat, so not ideal for books – but it’s a start. I going to ask for a low vision assessment too, to get some expert advice on what could help.

I feel more empathy now for people who find reading ‘hard’, in a way I never experienced as a kid. Reading meant a good story, rather than a confusing effort. At least I don’t have grown-ups telling me to make an effort.

Always read something that will make you look good if you die in the middle of it.

P.J. O’Rourke

There are perhaps no days of our childhood we lived so fully as those we spent with a favorite book.

Marcel Proust

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Walk training: Though I’ve been on the back foot with this for a week, we managed about 5k on Saturday, and have big plans for next weekend.

A vegetable beginning with ‘A’

August 10, 2014Daily lifecognitive, symptomscambricus

Asparagus, avocado, artichoke… and that one with the fabulous purple skin. You know, it’s the shape of teardrop, glossy and smooth, and needs to be cooked properly.

‘Aubergine’ keeps eluding me. I can picture one easily – I’ve got some growing in the greenhouse – but when I come to say the word, it isn’t there. There’s just a little space in my thinking, which causes a pause in my speech.

Everyone forgets words, some people more than others and it changes with age. I knew my place on that scale and it has shifted. It isn’t a problem with recognition or ‘knowing’ – it’s a problem with how quickly my brain can transport words to the areas that control speech, due to damage caused by MS.

‘Sorry mate, I’ll try a back route,’ says the brain as we hit another axonal traffic jam, where a backlog of nerve impulses are waiting, beeping their horns and winding down the window to see what’s causing the delay. Some give up and do a U-turn – ‘Sorry mate, this is going nowhere, you’ll have to drop that cup of coffee I’m afraid. Can’t get the signal these days…’ Others persevere but turn up late, ‘Sorry mate, it was aubergine you were after but I think the conversation’s moved on to deadheading marigolds. Want to throw it in as a random afterthought? That’ll be £5’

In addition to these fleeting losses, the wrong words slip in too. I now see how people get ‘their’, ‘there’ and ‘they’re’ mixed up, because I’ve started doing it, for the first time since I was about eight. And with the correct route snarled up, my brain will take the quickest route it can find , missing out the odd verb or conjunction on the way.

It used to be ‘easy’ for me to get words right. It’s less easy now, and that’s a disappointment that I need to overcome.

It is fascinating how the brain works. To labour the taxi analogy, it will drop me off at the corner because there’s a lorry parked in the way – ‘Have this word, it’ll do. Sounds about the same, no one will notice the difference. That’ll be £5 please.’

And there are the malapropisms of course. I’ve always found these funny, so it’s not so bad to be generating more of them myself. Sometimes I’ll confidently and unwittingly replace the correct word with one of roughly the same length and cadence – ‘I’ll check the colander and see what what we’re doing’ or ‘That new Hobbit farm is a bit long’.

My best recent effort? When tired at the end of the week, I tried to join a conversation about the cost of ‘noise counselling headlines…’

Better keep going

August 3, 2014Daily lifeMS walk, pacing, symptomscambricus

Again, I’m doing this off the cuff rather than to a plan. I’m planning for a plan to emerge I suppose. I like making plans; it seems to make sense and they make me feel safe, all warm and comfy in the knowledge that I have the next day mapped out.

And I’m grateful for that, because managing MS well requires making lots of plans. I’d hate to be fighting a spontaneous free spirit as I decided how and when to pace myself – though of course, I envy people who just ‘do’ things on a whim. It sounds more ‘fun’ but we can’t all be like that, and it would wear me out, MS or not.

I’ve been having a lucky week of it – having been to a wedding in Switzerland where the symptoms stayed in the background. It was fantastic fun, and a lovely, memorable family event. I could imagine myself striding through the mountains, or up to the cable car lifts at least.

One odd thing on the final day: starting with my left thumb, all of my digits went numb and tingly. It was a reminder. ‘I’m still here’, says MS, ‘and I’ve got more surprises’. Sensation returned within two hours, before I really got into formulating the plan for not being able to feel your fingers.

Now it is time to make tea. I will save my diet plans for another blog. We all deserve plates full of comfort cake but there is none that is calorie free!

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Exercise record:

(I am in training for the MS walk on September 28, and will use this blog to keep track of my training – done, as all things happy and worthwhile things are, with my lovely Ben.)

5k walk – five laps of the rec, plus there and back