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