The times they are a-changin'

May you live in interesting times, goes the curse, and I do feel in the midst of a particularly fascinating one.

On a national scale, whatever side of the Brexit divide you are on, I think we can all agree the situation we are currently in is nothing short of a warning-to-history tragicomedy.

On a personal level, my recent freelancing work has come to an end, leaving me facing the prospect of a job search - not something I am relishing.

It's all change - and not necessarily ones I would have chosen.

So to stop me fretting and feeling completely useless, I have volunteered to help with our local branch of the MS Society.

Really I should have done this ages ago because apart from one charity collection outside a local supermarket, I have done nothing practical to help.

But after a committee meeting yesterday and the filing of paperwork, I am now a fully fledged volunteer.

I really hope I'm of some use to the group. And, if I'm honest, I hope that doing the role they need will be useful to me - to help give me a purpose while I'm not working.

Perhaps this change will do me good.

:: The times they are a-changin' by Bob Dylan

Don't give up

When I was first diagnosed I set myself a personal coping time frame.

After the initial relapse, the shock of diagnosis and the subsequent settling period, my aim was to get through the first five years.

I don't know why I felt the need to set myself this limit, it wasn't as if MS was going to suddenly decide to quietly pack up and go away as soon as five years had elapsed.

And I don't know why I picked that arbitrary stretch. Maybe I'd read something about prognosis milestones which made me focus on that as a number. Whereas the benefit of actually having had MS for this length of time means you learn to focus more on the moments than the months.

But five years it was, and I made it through those years relatively unscathed.

So the next aim was 10.
And I made it - although with much more damage.

This weekend I hit 15 years.
And I made it - increasingly altered.

Fifteen years is a long time when you think about it isn't it? It's quite some time to be living with a disease that you did nothing to invite in. Fifteen years to live with uncertainty, change, deterioration and complete exhaustion.

It's an achievement of sorts though and I almost want to organise a bit of a bash. I won't of course, I'm not sure you can get MS party bags.

But I do feel there needs to be some sort of celebration of the past decade and a half.

Even if it's just a recognition of sheer bloody-mindedness, punctuated by periods of unexpected strength and bouts of utter gratefulness all wrapped up with the love and support of family and friends.

:: Don't give up by Peter Gabriel, ft Kate Bush

Defying gravity

Over the Christmas and New Year break we did lots of lovely things as a family.

None more so than joining three of my daughter's friends on an early January day trip to London to see a matinee of Wicked - the true story of Elphaba, Oz's wicked witch of the west.

It was a glorious day out, filled with the enthusiasm and hilarity of four nine and 10-year-olds who were just enjoying every last little thing about the day.

What a privilege to be able to share it with them and how grateful I am that I could.

I'd warned the party that I would inevitably weep at Defying Gravity - Elphaba's defiant battle cry - and weep I did.

Because it's a wonderful song about not accepting limits, not bowing to critics and not being afraid to take chances.

Elphaba speaks for all of us when she proclaims that 'everybody deserves the chance to fly.'

I don't know what 2019 is going to hold, but I do know that hearing that song at the start of the year is a pretty good refrain to keep in mind as I go through it.

:: Defying gravity by Idina Menzel

Perfect 10

Well, well, well – 2019.
New year, new you and all that guff.

It’s horribly predictable and not a little nauseating to see just how many newspaper features/online articles/advertising campaigns/shop fronts have the ‘new you’ mantra as their theme.

As if we’re all so utterly, unforgivably rubbish that we have to dramatically sweep away the person we were (low-key, overly sentimental, full of chocolate and gin) to suddenly become a shiny bright (and by inference, better) version of ourselves with leotards! And trainers! And fabulous hair!*

Of course it’s all just manufactured to make us a) feel rubbish about ourselves so we b) spend lots of cash on moisturiser/quinoa/gym membership then end up c) feeling briefly and insufferably smug about it all.

But by mid-January, this combination actually only equates to feeling a) shit + b) skint + c) sick - which is not the way I want to start a new year.

Because what if we quite like the old us actually? What if they’re familiar, slightly geeky and increasingly damaged but QUITE LOVELY THANK YOU?

What if we deal with a remarkable amount of testing times - MS or otherwise - and still manage to function like a normal human being?

What if we’ve learned a lot about ourselves and realised that in the end, we’re not that bad and are, in fact, quietly great?

And we don’t really want to make a new start because we’ve come quite a long way and somehow the start seems like something of a backward step?

Or am I reading too much into this?

There are of course, excellent examples of new year, new yous – amazing healthy lifestyle transformations, people quitting jobs to follow their dreams, great new projects that help and benefit people.

But I’d just like to put in a little plea for people to remember that maybe they don’t really need a totally new them.

Perhaps all we might need is to just find the bits of the existing us that are fabulous - the kindness, the humour, the strength, the thoughtfulness - and simply share them a bit more throughout the year.

Brand new year, great old you; could become a thing.

:: Perfect 10 by The Beautiful South

* Never gonna happen

Santa baby

Dear Father Christmas,

I do hope you’re well and gearing up for all those deliveries. Don't forget to wrap up warm and make sure your beard is properly protected.

You should have received my daughter's list by now. She's been very good this year and has done her homework without (much) nagging and cleaned her teeth beautifully.

Since we're chatting, Father C (can I call you that?), here's what I'd like for me – and every MSer – this festive season:

A cause, a cure and continual myelin repair, please. Plus genuinely feeling as well as we look. You could make a lot of people very, very happy.

But I appreciate you may not be able to deliver those in time for Christmas 2018. So, on a personal note, here's some alternative options for me this year:

1. Beautiful sky-scraper heels with hidden microchips in the bottom that automatically balance me. I'd quite like to sashay down the street again without wondering where the nearest flower bed is to cushion my fall.

2. A wearable hot water bottle/cool pack suit, which intuitively adjusts to my personal temperature needs, thereby preventing my hands/legs/everything packing up on me when the environment gets just one degree too warm or too cool.

3. This eyepatch. Styling out my eye damage.

4. A flashing badge with a changeable slogan to represent my experience on any given day. Options include: “TODAY I...said stupid stuff in a work meeting because my brain won’t function/cried in the kitchen to hide the worry from my daughter/slurred in public and had to explain the not-being-drunk thing for the 75^th time/inwardly crumbled at a thoughtless comment....BUT I AM STILL GOING.”

5. A machine which allows other people to experience all my symptoms: both the ‘Bam! Gotcha!’ out the blue ones and the constant, wearing, dragging ones – emotional and physical. I'd only switch it on for a short period (unless they’d really annoyed me), but it might help them to get an insight into what I'm trying to explain.

If you could possibly see your way clear to bringing just a single gift from the above suggestions (number one! bring number one!) I would be extremely grateful.

Yours in hope,

Mildly Scrambled xx

P.S. Carrot, milk and mince pies will be in the usual place. I don't mind the crumbs, but please don't let Dasher and Prancer chew the carpet again.

:: Santa Baby by Eartha Kitt

Tainted love

We've all got out own levels of acceptance haven't we?

Things we like, things we put up with and things we really won't tolerate.

There's the big no tolerance ones: racism, sexism, ignorance, Donald Trump. 

The lower level annoyances: knives in the fork drawer, toilet rolls hung the wrong way (it's OVER people, not under) and anyone who doesn't read fiction.

Then there's the list of things we just put up with. For me that includes laptop updates, cat hair in my tea and, well, hugs.

I know, don't hate me. I just have issues with personal space and have done since I was a child – my mum tells me I used to go rigid and look desperately uncomfortable from the age of two if anyone tried for a hug. I just wasn't having it.

So you can only imagine how thrilled I was, way back in my new-to-this-disease reading, to discover that there was a thing called the MS hug.

I know, just perfect.

The hug – not as pleasant as it sounds* – is a very tight feeling, usually around the chest, making it seem difficult to breathe.

It's a sensation best expressed by (of course) JK Rowling as she describes Harry Potter learning to Disapparate: "At once, there was that horrible sensation that he was being squeezed through a thick rubber tube, he could not draw breath, every part of him was being compressed almost past endurance."

The perfect comparison. Because the MS hug really can squeeze you. Very, very hard. And not let go any time soon. From a hug-avoiders point of view, this is obviously unacceptable.

The hug is actually due to spasms in the intercostal muscles between the ribs. There may also be feelings of aching, stabbing, crawling or pins and needles. All painful. And as with most things in MS, all due to nerve damage.

My first experience of the MS hug has actually turned out to be my constant one. It appeared during the relapse I experienced three months after having my daughter. It was so painful in the early days, I was sure there was something wrong with my heart.

Over the past ten years it has faded to a constant dull ache, appearing mainly on my left side; present every day but some days worse than others.

There are meds available to help this kind of nerve pain, but they are on the list of things my body just won't tolerate, so instead I have learned to put up with it.

This is one hug I just can't seem to keep at arm's length.

:: Tainted love by Soft Cell

* assuming you like hugs.

Pandora's box

Me: *Looking at Christmas to-do list, panicking *

MS: *crashing noisily through door wearing knitted turkey hat, arms full of wrapping paper, mouth full of chocolate*

Me: *sighing, putting down list* Oh hello.

MS: *opening arms (and mouth) wide, dropping paper (and chocolate) everywhere* Hiiiiiiiiyyyyaaa.

Me: Well this is an unexpected pleasure.

MS: I know, I know! I'm like an early Christmas gift.

 Me: Hmm, pretty sure I've not asked Santa for you this year.

MS: *pouting, wiping chocolate from chin* Yes, I had noticed. And don't think I'm not hurt by that sweetie.

Me: Well it's just that...

MS: *interrupting loudly* Twelve months of relative quietness. Fifty-two weeks of reasonable energy levels.

Me: Erm, well....

MS: *ignores, continues in louder voice* Three hundred and sixty five days of only minor blips.

Me: Yes, but....

MS: *now at eardrum splitting volume* Thirty-one million, five hundred and thirty-six thousand seconds of slightly uneasy calm. It's not enough for me dahling.

Me: Oh, er, sorry?

MS: Yes, that's right. Sorry is right. Why haven't you seen much of me? Could it be that I've offended?

Me: Well, not offended as such, more sort of....

MS: Could it be that I came on too strong? Too upfront with my attention?

Me: Well, yes, that could be it, I mean...

MS: But my dear, I only want to shower you with the gifts I can give. Gifts like numbness or sight loss or pain. Presents like worry or fatigue or confusion. Gems like falling over or reduced income or fear for the future.

Me: Yes. Not exactly gold, frankincense and myrrh is it?

MS: What is myrrh? I've always wondered.

Me: It's a gum from a thorny tree. Supposed to have medicinal qualities.

MS: Oh. Well, I wouldn't be bringing you anything helpful along those lines would I?

Me: Obviously not. So what is it you wanted?

MS: I told you, I've hardly seen you all year. I miss your little squidgy face.

Me: *nervously prodding face* And?

MS: And what?

Me: There must be something else. I can't believe you've let me get away with limited problems for a whole year when you're causing such horrors for other people.

MS: Well, there is one thing.

Me: Knew it. What?

MS: *scrabbling in pockets and taking out a tiny gold box* Well, it's this.

Me: *surprised* Oh! Is that a present? An actual present?

MS: Of course. It's to remind you of me at this special time of the year.

Me: Oh, crikey. Thanks. *thinks* It's very small. What is it?

MS: *gathering up wrapper paper heading to door* Oh, it's a box of guilt.

Me: It's a what?

MS: *leaving* You know, guilt. Bit of fear in there too. It's small now but it will get bigger and bigger the less you see of me. Happy Christmas.

Me: *Looking at gold box, panicking*

:: Pandora's box by OMD