All posts by cambricus

About cambricus

A new gardener, with a 100ft to play with. View all posts by cambricus →

How I found freedom on an e-bike

August 8, 2016Uncategorizedcambricus

kuo plus1-ebike-blog-maintain-cadence with MS — 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 🙂

How I made it through the MRI with Manilow

July 26, 2016TreatmentMRI scancambricus

Having an MRI scan is like being massaged by a xylophone, with a cage over your head

MRI scans are not fun, especially if you are claustrophobic (the only sensible phobia in my opinion. Who’s got a good thing to say about being trapped?).

I’ve just ‘ridden the tube’ for the third time and, I’m proud to say, I managed to be entombed for 25 minutes without suffering a whimpering panic attack. Like a horse refusing its bridle, it took me at least four attempts to accept the plastic head support being lowered over my face on previous occasions. (Think Hannibal Lector’s mask in Silence of the Lambs.)

It’s ear plugs in, headphones on, cage down, and trundle backwards into the tunnel, I can see my feet , but DON’T LOOK UP!

‘Oh Mandy…’

Ok, I confess that one of my coping mechanisms is singing Barry Manilow songs to myself. Don’t ask me why. I’m not really a fan. ‘Copacabana’ got into my head once, and the repertoire has grown steadily since.

I recited my mantra: I’ve done this before; I am safe; it will end

As the first wave of panic washes over me, I recite my mantra: I’ve done this before; I am safe; it will end.

My amygdala is shrieking ‘Noooo, get out of here!’ and I toy with the button they give you to press for help.

‘Oh Mandy, well, you came and you gave without taking …’

I force Barry’s words through my mind again, and then remember that my sweetheart Ben is waiting outside and has promised to buy me a drink, if I survive. Then I’m thinking Talisker, a nice large Talisker. Which takes my mind into the duty free of an airport departure lounge, where I’m waiting for my gate, with a neat little carry-on case and holiday dreams.

‘… and I sent you away. Oh Mandy.’

No. I really don’t like this. I can’t get out. I can’t get out. But I don’t have to panic. Just yet.

Every few minutes the machine belts out a fresh rhythm

The noise is a useful distraction too; it sounds very wooden and discordant for something so hi-tech. As a new scan starts every few minutes, the machine belts out a fresh rhythm, and judders away beneath me violently. I try to visualise modern dancers moving in time as my spine vibrates.

‘Oh Mandy …

Don’t panic! Oh, I’m not actually panicking. This is getting a bit … boring.

Then all sound and movement stops. Anxiety builds. They’ve forgotten about me! They’ve gone home and left me! I’m trapped!

But these scanner nurses/attendants/operatives are too business-like for that; this privately run mobile scanner is parked in Queen’s Square to cut hospital waiting lists, not scoop up patients like the Child Catcher in Chitty, Chitty Bang Bang.

I felt like a character in Resident Evil

For my first scan, three years ago, I had to find my own way through labyrinthine corridors to a basement MRI department, dragging a drip trolley and wearing an open-bummed gown. I felt like a character in Resident Evil.

This time it was a warm, rain-fresh Sunday afternoon (yes, Sunday), with the promise of treats, and lots of love and support waiting for me.

It came to an end and I was safe. They pulled me out, took off the mask and let me go. The relief was sublime; the sense of pride was powerful too.

And there was a pub across the square, so I didn’t have long to wait for my single-malt reward.

For copy-editing with clarity, simplicity and trust, contact me at Thomas Editing

Chancellor, be not proud…

March 17, 2016BenefitsBenefits, chronic illness, disabilitycambricus

john-donne

I’m sure you studied the metaphysical poets at St Paul’s, so perhaps you’ve forgotten your Donne, George Osborne.

No man is an island; remember that when you ‘incentivise’ ESA claimants by making them £30 a week poorer, and deprive disabled people of essential support so you can pass on tax savings to the wealthy.

John Donne’s message (if I remember my GCSE English) is that all mankind has an equal value in the eyes of God, and that the loss of one is a loss to us all; though I’m an atheist, I’d agree with the sentiment.

Multiple sclerosis is insidious and unpredictable. One day I might be ok; the next I may wake up unable to walk. There’s a strong probability that progressively I will lose some of my mobility and day-to-day life will become increasingly ‘challenging’. I don’t need the benefits now, but I can see a day when I will, if there are any left by then.

Who knows for sure if they will be joining me on this journey? How near or far they are from shifting from being part of the ‘hard-working family’ to being one of ‘the disabled’ cohort? Nobody knows. Not even you George.

As comedian Bill Hicks said, ‘non-smokers die too’. It just isn’t fair, this health and disability lark.

We can improve our odds through diet, exercise and abstinence but ‘you and me baby, ain’t nothin but mammals’, vulnerable to innumerable diseases, conditions, and environmental factors outside our control.

Be it ‘our own fault’ or genetically determined, bits of us will end up misplaced, missing, scaly, swollen, painful or just useless. From cradle cap, lazy eye and glue ear to ingrowing toenails, prickly heat and varifocals, most of leave as we came in, as wonky fruit: tasty bundles to be valued despite physical imperfection. We have so little control over where we sit on the spectrum, and how we move along it.

You can control Capital Gains, school opening times, and the width of the M62, George. But you can’t control who becomes disabled, to what extent, or for how long. You talk about ‘controlling disability benefits’ as if you can control disability.

Disabled people can’t snap out of it and get a job, or cast aside their incontinence and mobility aids because that will balance the books.

Of course, you could show the UK population that when disability strikes them, as it will, directly or indirectly, they will still be entitled to a safe, dignified, valued and productive life, whoever they are.

Hell, George, you could turn the whole thing on its head! Remove the fear, and explain that we’re all in it together: we are all disabled people, today, tomorrow or in the future.

You could have some faith in the British public too. More than 100,000 have signed the petition to have the travesty of your cuts debated in Parliament.

They will cheer for the disabled ‘superhuman’ paralympians in Rio, and the disabled former troops competing in May’s Invictus Games. And so many of them – of all political hues – are cheering every day for the people they live and work with, who happen to be further along the disabled spectrum; so very many are supporting, caring, advising, encouraging and loving. What do your actions say to them?

You won’t bother sending to know for whom the bell tolls, Osborne. It’s got your name on it.

It’s legs crossed about bladder drug decision…

January 7, 2016Treatmentbladder, treatmentcambricus

My bladder-control drug is ‘seriously old, I mean seriously, decades old’, says the seriously young doctor in the uro-dynamics clinic.

Somehow I feel this is my fault. Like, durrh, why are you taking that old-fashioned junk? Umm, because a GP prescribed it…

The side effects are naff. Dry mouth I knew about, but dry eyes? ‘Oh yes, it causes dry eyes too. Dries up all your mucus…’ A head-slapping moment of realisation – THAT’S why my eyes have felt full of sand for more than a year??? ‘Oh yes… Natch.’ I quickly process how much I’ve spent on dry eye spray and move on.

I am prescribed the latest drug on the market, which has fewer side effects, and leave feeling nicely on trend.

‘No, I can’t prescribe that without a letter and a decision from the CCG team’ says my GP at my drugs review the next day. ‘It’s a seriously new drug’, she explains.

And I’m left feeling as though it’s my fault again. I’ve jumped a queue by mistake and a man in a suit is rattling his Times at me. ‘Gosh, so sorry’, I fluster in my head. ‘Of course I should have tried some more mature drugs before racing ahead with those bright young things.’

It is is down to cost and accountability. NICE hasn’t said the new drug is the most appropriate treatment to calm bladders made excitable by MS – (I want to go again, pleease can I go again? You’ve only just been!). GPs in the new clinical commissioning groups can’t prescribe it long-term just because an enthusiastic hospital doctor has decided to give it a whirl.

As an empowered patient, I have to ‘just get a letter’ from the hospital justifying the prescription… wish me luck.

*Both doctors – the ‘seriously young’ one (simply a lot younger than me) and the cash-conscious GP – saw me promptly, were friendly and explained what they could in the time available. It’s the system that needs tweaking, not the people.

Broom bites the dust in #ichallengems opener

September 9, 2015Uncategorizedcambricus

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

(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

Don’t miss MS-Thermo-Feet for a feeling that’s unreal!

April 27, 2015Daily lifeswimming, symptomscambricus

Brrrrhh… Fed up of the chill when you get into the swimming pool? Wish you could have that tropical feel in your local baths? Try MS-Thermo-Feet for a surprise rush of heat to your toes. Get into the chilly water and feel your feet warm up rather than cool down. It’s magic!

*Sensation guaranteed to last for the first 20 minutes. **Terms and conditions apply.

*Or it might last for hours. Care when walking is advised.

** MS-Thermo-Feet might activate in the middle of the night, when you’re warm enough already. This is a natural product and some loss of sleep should be expected.

**If MS-Thermo Feet become uncomfortably warm, expose to air and put up with it.

**MS-Thermo-Feet may cause balance problems, fatigue and bladder urgency. No liability accepted. All rights waived.

**If MS-Thermo-Feet fail to heat, wait an unspecified period of time and it will happen again. When you least expect it.

If you like a sensation that’s almost impossible to explain, why not buy the bundle?

MS-Sandy-Feet – walk along the beach forever, with the non-stop sensation of **sand between your toes. Make mine a Pina Colada!

** soft, fine sand sensation not guaranteed. 50% likelihood of damp shingle.

MS-Vibro-Feet – feel like a bit of a buzz? Forget the reflexology and try this envigorating **tingle between the toes.

**vibration might feel like a mobile phone on silent, persisting for hours while it works it’s way up your legs.
Phone 0800-just-sensory NOW!

You’d be mad not to…

sofa rage

April 8, 2015Uncategorizedcambricus

(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.

ECG – easy as 1,2,3

April 4, 2015Daily life, Treatmentchronic illness, fingolimod, gilyena, ms nurse, symptoms, treatmentcambricus

ECG taken in March 2015 — The ECG nurse won’t let you leave the room if anything is up.

The ECG was slotted into my ‘group education’ morning about fingolimod, the new MS drug I’m in the running for.

And education it was: we got facts, gave details and will have to pass blood, heart and eye tests to get onto this second-line disease modifying treatment. The six of us waited for nurses, bloods, our ECGs – very quick once the machine was fixed – and then for the 1-2-1 medical history check where I realise there are lots of things I haven’t got wrong with me.

Fingolimod (trade name Gilenya) modulates your immune system by keeping your T-cells ( a type of white blood cell) trapped in your lymph nodes, where they can’t vault the blood-brain barrier and attack the myelin that coats your nerves.

The plus points? 70% reduction in relapses, slower disability progression, a daily pill rather than injections, no regular flu-like side effects. Big thumbs up.

The negatives? If you catch a cold, scratch yourself in the garden or eat some dodgy buffet food, the T-cells can’t help you fight infections in the usual way. ‘Sorry mate, stuck in these lymph nodes. You need to get onto those other lymphocytes – the B-cells – or maybe give the leukocytes a bell.’ (Don’t take my word for it)

Our questions about ‘Will we get colds all the time? Will my acne return? I’m rather prone to cysts… How do we get antibiotics quickly’ Can I eat raw cheeses from Borough Market?’ were met with the infuriating but honest MS answer: ‘It’s different for everyone. We’ll keep a close eye on it and see what happens…’

It is ‘immunomodulation, not immunosupression’ we were reassured. It was not like aggressive chemotherapy. I nodded politely at the time but my comfort came from trust in the MS nurse, rather than really ‘getting it’.

At least we weren’t alone – sharing the experience always helps, you get to share stories of subtle symptoms, relapses and steroids. How we laughed! We did actually, quite a lot.

So now we wait some more. I need an eye check because I’ve had uveitis, and there’s a risk that… but if that’s ok, and my blood is ok, then I should get my first dose in June.

And that has to be followed by 6 hours on an ECG machine, with constant monitoring by a cardiac nurse in person and a cardiologist remotely. That’s because fingolimod slows your heart rate down on the first dose and there’s a risk that…. oh never mind, you get the picture.

‘It’s different for everyone. We’ll keep a close eye on it and see what happens…’

Poo, three dancers and small boys in the Tate

March 8, 2015art, Daily life, Uncategorizedart, symptomscambricus

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.

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.

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

Pizza anyone?

January 18, 2015Uncategorizedcambricus

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.