Category Archives: Daily life

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

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…

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ECG – easy as 1,2,3

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

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.

 

 

 

 

Suspicion on steroids

At least when wide awake at 3am I was able to enjoy Suspicion, directed by Hitchcock and starring Joan Fontaine and Cary Grant. Iplayer and iPads are wonderful things. I was contemplating a drama in Gaelic before spotting this thriller, which I’d never seen before. What starts as a rom-com, with Grant a fast-quipping and kissable rogue, slides into an unsettling mind game where it is impossible to tell if he is telling the truth. Because he does lie, a lot – or is it all the time?
Joan Fontaine won an Oscar (the only one for a Hitchcock film) for her affecting performance – passionate, smart, silly, confused, smart and ultimately, suspicious. And she is quite beautiful throughout – in a fascinating timeless 1940s way that you could never dream of replicating. Which made it an unthreatening watch from my pyjamas and bundle of pillows, with Roger the cat trying to find his niche on my feet.
This has happened before when I’ve had a course of IV steroids to speed up a relapse, as is happening right now. I feel really tired, stay up as long as possible, get into bed and stay wide awake. Run-of-the mill side effect…
I try to go with the flow – enjoyed an hour of an Inspector Maigret audio book (I am also hooked on Audible) before the film, and tried hard with my mindfulness meditation app afterwards, before being foiled by random leg spasms. What’s that all about, eh? Roger didn’t know either.
Of course, sleep came two hours before my alarm went off, to get me back here in the day unit by 8am, to watch the drip for an hour and listen to a bit more Simenon.
I’ll let you know how it goes tonight.

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Review 1: One more cup of coffee for the road

dylan-desire

Desire
Bob Dylan
Nominated by David Angell

My first contact with Bob Dylan was when I scratched my Dad’s copy of Blood on the Tracks. It was 1975, I was four. How did I know I’d ruined a masterpiece?

I’ve listened to bits of Bob since but today was my first encounter with Desire, his 17th album, from the following year. The biggest song? Hurricane – which I did recognise – a powering protest song about the wrongful imprisonment of boxer Rubin ‘Hurricane’ Carter that made me angry, as it should.

But it’s also a good example of what is great about this album, which is the instruments and the orchestration. Forget The Times They are a Changin’ acoustics, this is bouzouki, accordion, mandolin, violin, congas, piano, all layered tracks and crescendos.

And the beautiful women singers Emmylou Harris and Ronee Blakley do much more than accompany, especially Emmylou on my favourite track, One More Cup of Coffee.

There’s a flavour of Mexico too, with Spanish guitar alongside the harmonica. He’s gone a bit cowboy. Dylan’s having fun. He’s sharing, and the collaborations pay off.

JustGiving - Sponsor me now!

#Ichallengems

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

Go on, have a Welsh cake
Go on, have a Welsh cake

 

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…

 

Book with pages opening

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’

iStock_000012903391Medium

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

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

 

 

 

 

 

 

 

Better get started

I need to just start doing this. No amount of thinking, planning, and tentative writing will make something appear. So no plan for today, just someone with MS with things to say.

Maintain Cadence with MS is about keeping going. On a bike you can use your gears to keep the wheels turning at the rate you feel comfortable with. The effort should stay the same but the speed will vary. I want to keep going, despite having MS, changing up and down gear when it feels right – and working out when that is. And I need to keep track of that, and, if people are interested, share it.

That’s the start. I’ve impressed myself by just doing it.

See you tomorrow.

Rebecca