The Ballad of Barry and Freda (Let's Do It)

I'm very lucky that one of the work projects that I'm currently involved with centres around the history and heritage of a local iconic music venue.

It's involved hours in the archives and a lot of fascinating research around the venue's performers - from poets and dramatists to singers, sports stars and comedians.

One of the many, many acts I came across while gathering information was the glorious and much-missed Victoria Wood.

So in her honour - and to stave off the November chill - here's one of her finest moments. Turn up the volume and dig out the women's mags.

:: The Ballad of Barry and Freda (Let's do it) by Victoria Wood

All the small things

Ack. November. Without doubt the worst month of the year. It’s cold, grey, generally exhausting and thoroughly depressing.

November doesn’t have the surprising warmth of early autumn, the tingly excitement of the Christmas countdown, the new start of January or the pancakes of February.

It also heralds the danger period for my relapses, all of which have generally fallen between November and February. 

So, as the traditional gatekeeper to MS crap-ness, I don’t tend to greet this month with much pleasure and instead try and conserve as much of my rapidly depleting energy as possible.

Therefore, to stave off the bleakness, I’ve made a list of ten things that I could do to cheer me through the month. 

My rule for drawing up the list was that any activity must involve minimal effort but bring maximum joy.

1. Hot water bottles. Oh, could there be anything more lovely than strapping a few wobbly hugs of liquid love to your torso with a blanket?

2. Yes! Yes, there could; it’s having a stack of Marmite on toast within easy reaching distance of said hot water/blanket mound.

3. And also a pot of tea.

4. If I have to leave the marmitey cocoon (which actually doesn’t sound all that pleasant when it’s described as such) to go to work then at least I can read books on the train. And when I get home. Hurrah. Current reads: Neil Gaiman, Angela Carter. And Viz.

5. Putting on high heels.* Yes. Despite my shocking balance, I LOVE the heels. I have loads of pairs from my pre and early-MS days when I could still wear them without wondering where the nearest flower bed was to cushion my fall. But I still love them, the minxy dignity-killers. So I take them out now and again, dust them down and walk carefully around the house in them. Can’t get far, can’t manage the swagger like it used to, but rather than making me sad for what I may have lost, they still fill me with joy for what I can still do – just for slightly more limited periods.

6. Humming to myself. Particularly shoobie-doobie-doo type refrains. And not just in private.

7. Making up songs about poo with my daughter; it’s not sophisticated but it’s very funny.

8. Radio Four Extra. Drama, comedy, comforting marvellousness.

9. Visitors. As long as I can be in pyjamas, they make their own drinks and don’t mind if I stare blankly at them. I’m sorry, blame November, it makes me a rubbish host.

10. Bottom. I miss you Rik.

:: All the small things by Blink-182

*In the past I have tried to convince a very dear friend that high heels work much better as a mood lifter than chocolate scoffing and are a far healthier alternative. She was never sold on the idea. However, I like to think she may now wear high heels to eat chocolate and I would class that as a partial success.

All together now

Both my husband and I are lucky enough to have jobs that enable us to learn a lot about our local region - it's history, culture and diversity.

Sometimes this allows us to experience very moving opportunities that we may otherwise never have had.

One of these came at the weekend when we were guests at the one-year anniversary of the unveiling of a powerful statue.

The Lions of the Great War statue honours the sacrifices made by South Asian service personnel of all faiths from the Indian subcontinent who fought for Britain in the First World War and subsequent conflicts.

It was created by a local sculptor and funded by members of a local Gurdwara who wanted to remember the men who gave their lives for a country that wasn't their own.

The remembrance service which formed part of the event was extremely moving - giving voice to a community whose part in history had previously not been visible to the wider public.

As a family, we were made to feel extremely welcome, enjoying lunch in the Gurdwara and receiving thanks for the part my hubby played in getting the statue into the public eye.

It was a wonderful event - and the sacrifices of a community we don't often hear about are truly something to reflect upon as we head towards Remembrance Sunday.

Find out more about the statue here.

:: All together now by The Farm

Sympathy for the devil

Way back when I was first diagnosed - almost 16 years ago now - I read a lot about MS research and break-throughs and promising new treatments.

For a newbie, it was all a bit overwhelming and I'd struggle to tell you now which of the things I read about have come to pass, which ran out of funding and which have been consigned to the MS dustbin.

But today being the day it is (Halloween, not potentially-but-actually-not-really-Brexit-Day) I have been thinking about one of those early bits of reading that has stuck in my mind.

This was the strangely charming 2006 study which identified a pair of "angel and devil" genes which fight to make an MS patient healthy or ill.

The research explained that one of the genes thought to be responsible for MS is one called DR2b.
And in a plot twist worthy of the best Hammer horrors (or American soap operas), scientists discovered that this gene is the "evil twin" in a pair of DR2 genes.

Evil, moustache-twirling DR2b exacerbates MS symptoms, but its partner gene - DR2a - heroically tries to dampen them down and counteract DR2b's effects.

At the time, the scientists leading the research stated: "The DR2b gene clearly tells the immune system to go hard into battle against the body's own tissue, so it starts to work in a way that actually damages the person.

"For this reason, natural selection has eliminated the gene on its own, but allowed it to be inherited only when it is accompanied by another gene (DR2a) which tempers its effect."

I have no idea whether research into the angel and devil genes is still going on. The MS Society is funding research into the HLA-DR gene and Vitamin D, but I'm unsure if this is the same gene, or simply a similarly named one.

But I think the study has stuck with me for all this time because of the image it creates. The endless epic battles between a malevolent horned devil and its benevolent haloed companion represent the to-ing and fro-ing of life with MS so well.

And while it's obviously not pleasant to know that I may have a devil lurking within, it's also rather lovely to believe there's an angel looking after me too.

:: Sympathy for the devil by the Rolling Stones

Unbearable

My pie chart of things about MS that without MS have said to me.
Proportioned by irritation levels.

:: Unbearable by The Wonder Stuff

Send in the clowns

((Just been to see Joker - an inventive origin story that references PBA. Made me think of this post.))

Multiple sclerosis brings with it a whole host of entertaining* features.

Not enough danger in your life? Go out in your highest heels with your worst balance.

Want to feel like you’re studying Latin? Read Pot Noodle preparation instructions when you’re fatigued.

Need to experience more art? Wait for your next bout of optic neuritis and see the world like a Monet painting.

But one of the lesser known entertaining* features is that of the pseudobulbar affect or PBA.

This impressively-monikered symptom is also charmingly known as emotional incontinence and can take the form of involuntary crying, wild episodes of laughing or other highly emotional displays.

We might find ourselves weeping at something only moderately sad, laughing uncontrollably at something only vaguely amusing and in both cases being unable to stop ourselves.

Episodes may also be mood-incongruent: we might laugh uncontrollably when angry or frustrated, for example.

And most entertainingly*, sometimes the episodes may switch between emotional states, resulting in us crying uncontrollably when having sex.

Particularly tricky to explain away the first time you sleep with a new partner.

This particularly messy symptom of MS is caused by lesions occurring in the areas of the brain that govern emotional pathways.

It can be upsetting, frustrating and embarrassing and at present is treated through the use of off-label antidepressants.

I don’t think I’ve experienced PBA yet. But to be honest, it’s hard to tell.

I’ve always been a bit emotional, so blubbing buckets at any number of those ‘help the children/animals/earthworms’ adverts is pretty much par-for-the-course for me.

Equally, laughing inappropriately when trying to be stern with my daughter or explain a serious situation is fairly standard behaviour and one that was there before my diagnosis.

Added to which, MS can be a pretty depressing and/or desperately hysterical condition on its own, never mind any sneaky lesions butting in, so how do I know?

It’s a difficult one.

I guess the only way I’m going to be able to tell for sure is if I suddenly start bursting into gales of uncontrollable mirth watching Mrs Brown's Boys.

Then I’ll know it’s definitely time for another MRI.

:: Send in the clowns by Judy Collins

* by which I mean distressing

Sit down

I am currently self-employed and am working for two different organisations - a local authority and a national charity.

The fact that I am lucky enough to still able to work more than 15 years after my MS diagnosis is not lost on me - many of us can't.

I can't pretend it's easy and I can't pretend it doesn't wear me out, but at the moment it is do-able.

I am also lucky in that - to some extent - I am able to pick and choose my own hours and can swap between working in the office and working from home.

But every now and again I need to travel to London for meetings or events for the charity I work for. I've been quite a few times this year and mostly I find it an enjoyable experience.

I live in a small town and the London train leaves us at 7.30am. I generally get back home at 6.30pm. Sometimes I have to change trains between stations (I did last week, engines failed), sometimes not.

The charity I work for is situated three tube lines from the station I arrive at. It takes me a good half hour to get across London.

Last week my meeting took me a total of nine trains to get to London, across London and back from London.

It took endless up and downs of escalators, speed walking to make the meeting on time and a bit of ungainly running to get my pre-booked train back.

Not to mention concentrating and contributing in a meeting with a large number of people I'd not met before. Cognitive panic, obviously.

I find the whole experience of going to London both utterly exhausting and strangely exhilarating.

It makes me proud that I can still do it - but saddened by that fact that I have to then spend the next few days struggling with the impact.

This recent trip has also made me seriously consider getting a Transport for London 'please offer me a seat' badge for the tube because it's very rare that you get a situation like this:

:: Sit down by James