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

Like a hurricane

I was standing in the wind tunnel that is my daughter's school playground yesterday wishing I'd a) worn more clothes and b) weighted down my boots.

As I was pulling up my hood to (unsuccessfully) protect against the relentless gusts I was joined by a fellow windswept parent.

A parent who, I must admit, I have something of a mum crush on. She is immeasurably kind and wise - she's the yardstick I refer to (in my head) when I'm having a parenting crisis.

She is my distinctly non-religious and eminently capable female version of  "What would Jesus do?"

We got chatting about weekends - she'd just been on a mindfulness weekend to aid her working life and her personal one. (See! This is the kind of thing she does!)

The weekend had involved a visualisation exercise where she and the other attendees were asked to create an image of all their worries and concerns, write them on the side of a log and sit on the riverbank and watch as those logs drifted downstream.

You weren't allowed to touch the logs as they went past, you weren't allowed think of an answer to the concerns they raised and you certainly weren't allowed to launch yourself full-pelt into the river to slow down the logs.

You simply watched and acknowledged the logs as they drifted by.

This had really helped her, she said, as she's prone to hurrying to find solutions rather than taking time to calm herself down and think without clouds of anxiety hampering any decision.

I like the thought of it. I'm also prone to leaping into decisions, to reacting on panic, to blindly trying to clear lots of things off my list without properly thinking them through.

I don't know if it's a personality thing, a distraction thing or a reaction to MS mayhem thing - a way of gathering some sort of decisive control from the uncertainty this disease brings. Even if that decision might be the wrong one.

At the moment, I feel that I'd like to try for a bit of calm in the middle of the mayhem and if it's some floating logs that will do this for me, then I'm willing to sit on the bank and give it a go.

:: Like a hurricane by Neil Young

Fakin' it

The new work life that I have found myself in is really quite different to my previous familiar worlds of public and charity sector employment.

It is a tech-driven industry in which a whole host of remarkably impressive people stand up on stage in front of hundreds of their peers and present brain-frazzlingly complicated talks.

It's quite the spectacle.

And while I am enjoying it, I do often find myself so utterly bewildered by the amount of stuff I don't know that I wonder how on earth I manage to stumble through the day.

But then I heard a podcast from one of these Silicon Valley types about something called Impostor Syndrome and I suddenly felt a lot better.

In essence, this hugely successful and obviously immensely brainy chap was speaking about how he doubted his achievements and worried about being exposed as a fraud.

From an outside listener's point of view, this was clearly bonkers. But it did make me stop and wonder about just how many of us are going through life feeling this way too.

I know I have achieved some stuff in my working life, I know I have done the same in my personal, but I do feel a lot of the time that it's been down to luck or somehow talking a good talk.

I'm not sure it's false modesty, I really do feel like I've gotten away with stuff for quite some time.

Yet if my friends were to say the same, I'd easily be able to sit them down and list the things that they've done and the qualities they have that make them nothing like an impostor.

In fact I used to make lists for my friends to stick on their mirrors detailing all the attributes they have and why they should be proud to be who they are.

Much as I don't want to do the same for myself because a) cringe and b) I don't believe it anyway, perhaps we all need to ask a friend for a bit of positive feedback.

It'd be nice to know that we're actually not the impostors we feel we are.

:: Fakin' it by Simon and Garfunkel

The joker

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.

:: The Joker by the Steve Miller Band 

*by which I mean distressing

Overload

Oh dear, I think I've been taking too much on.

What with work, half-term socialising, trick-or-treating, bonfire parties and constructing a Crystal Maze game for the family (as you do) I am in danger of overbalancing.

Not the physical wobble (although there is a risk of that) but overbalancing the precarious MS seesaw.

The one that keeps everything just about in check as long as you learn not to push your luck. Not to take that extra call, plan that extra activity or enjoy that one more late night.

You see, with MS, we all know that the sensible thing is to pace ourselves.

But with MS, we all know the over-riding panic is do it now or we may never be able to.

I don't know at what point I am going to learn to balance the two. But if I haven't learned it in nearly 15 years of living with this energy-zapping disease, I'm beginning to wonder if I ever will.

Probably worth some proper consideration.

But can't stop now. Things to do. While I can.

:: Overload - Alfie Zappacosta

The first cut is the deepest

It's Hallowe'en - what better way to celebrate the night of heebie-jeebies than by dwelling on my own unnerving condition?

I've spent some time today wondering at which point over the past near-15 years I have felt most scared by my MS.

• That very first hospital admission?
• Hearing the diagnosis?
• Telling my partner he could leave if he wanted to?*
• During the decisions we made about having children?
• Leaving work and feeling useless? Restarting and struggling again?
• Struggling with poor balance, pain and gradual cognitive destruction?
• Realising that my eyesight really wasn't going to improve?
• Wondering if this moment is as well as I'm ever going to be again?

I honestly don't know. And the sad likelihood is, unless some sort of miracle cure is discovered, the most frightening is probably yet to come.

Of course, I'm fully aware this is no way to live a life - trembling in the face of what-ifs - but sometimes these thoughts are completely unavoidable.

And maybe they deserve some consideration.

Being diagnosed with an incurable, progressive disease is frightening. There's no getting away from that.

Once we're diagnosed we realise that, to a greater or lesser extent, fear is a part of our lives now. Fear of the unknown, fear of the known, fear of the damage, fear of medication, fear of progression and fear for our future.

I think we need the chance to acknowledge this dread now and again; to talk about our what scares us and rail tearfully/angrily/gin-sodden against the unfairness and randomness of a disease that was absolutely not our fault.

Sometimes we need these times of overwhelming dark to be able to fully appreciate our light: to see how remarkably we're coping, how strong we became when it was our only option and how very proud we should be of the fact that we get up every single day and carry on.

Perhaps if MS could see what it was up against, it might play a few less tricks. 

:: The first cut is the deepest by Cat Stevens

* He didn't. We got married.

Look at me

I’ve got a cold so logically it’s time to start counting the bruises.

- One from when I overbalanced at my desk and cracked my hip on the printer.

- One from the sink when my legs went weak and I flailed out for the taps.

- One from the doorhandle which I failed to grab properly and instead hit it with my forearm.

- And one from the corner of the bed as I was falling gratefully into it.

Generally speaking when you have MS, sharp edges are your enemy – this danger is doubled when any sort of virus comes knocking.

It’s almost as if the MS gets massively jealous of this newly germed interloper and drags out previous symptoms (in my case balance) to remind you just who should have the attention.

It’s like a toddler screaming “look at me, look at me” until it cries and vomits Haribo on its party shoes.

Depending on my situation, I will either:

* compromise with the toddler (sit down, do very little, avoid walls)

* ignore the toddler (do some work, fall into things) 
or

* give in to the toddler (go to bed. Although apparently without avoiding the frame)

In the end though, like most tantrums, it’s just a case of waiting it out because unfortunately there is no naughty step for this particular scenario.

Although if there were, multiple sclerosis would be sitting there and reflecting on its behaviour FOR A VERY LONG TIME.

:: Look at me by Geri Halliwell