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

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

Patience of angels

Like many other MSers, I’m often greeted with a cheery “You look well.”

And although I could interpret this patience-testing phrase in different ways*, generally I like to think that it’s coming from a good place and spoken by kind people who really do want me to be well.

And so I smile and brush it off with “Thanks, good make-up” and leave it at that to avoid getting into a long, drawn-out woe-is-me conversation which will just put a damper on everyone’s day.

Because unless you’re with a fellow MSer, discussing symptoms - particularly hidden ones - can be a bit like listening to someone else’s dreams. Very vivid to you, very hard for anyone else to comprehend.

On the whole, it's not something I feel I can be totally honest about, even with friends who have been there throughout the whole process. 

Not entirely sure why - perhaps it's just my damaged state has become so normal I've stopped noticing, perhaps it's just too tedious to go over again or perhaps because actually talking about it makes it a bit too upsettingly real. For everyone.

But maybe Invisible Disabilities Week is the ideal opportunity to share my hidden damage in all its glory. (Plus this is a blog so I can’t see your I’m-sort-of-listening-but-I’m-also-thinking-about-my-dinner face.)

So this is me, looking well.

And when I relapse I look rough as hell and continue to look that way for quite a while.

Oh, hang on...maybe that’s what’s behind the “you look well.” It’s not that I look particularly good, it’s because people just can’t bring themselves to tell me how bad I look the rest of the time.

:: Patience of angels by Eddi Reader

*Including if you look well, you must actually be well and not the clanking bag of bones you claim to be. You have been lying to me and the world at large, making endless excuses for not doing stuff and sucking our sympathy dry. I am not bringing you cake/flowers/gin ever again.

Bigger on the inside

Here's a phrase I never thought I'd say: Hurrah! Doctor Who is back!

The younger me would be baffled by the excitement, the older me is married to a huge fan.
I have, over time, become (excuse the pun) indoctrinated.

Anyway, it's back on our screens and it's pretty darn great. Astonishingly the world hasn't imploded after the casting of a female doctor and I ended the opening episode deciding that I really want to be Jodie Whittaker.

Obvious reasons: funny, clever, backchats toothy aliens
MS reasons: regeneration

The doctor is able to regenerate into a bright, shiny new version of herself. Brand new body, rejuvenated cells and a spectacular wardrobe.*

Ah, if only that were the case with MS.

As it stands, we know that our brains have a natural ability to repair and regenerate. Particularly important in the case of myelin - the protective stuff wrapped around our nerve fibres. The stuff that gets damaged during relapses.

This regeneration involves special myelin-making cells in the brain called oligodendrocytes. They, in turn, are made from a certain type of stem cells in our brains.

Nerve calls can signal for help when their myelin is damaged (a sort of neurological 999 call) and when the signal reaches the stem cells, they travel to the site of the damage, mature into myelin-making cells and - tadaaaa- repair the damage.

Unfortunately, this regeneration becomes less effective over time and doesn't work as well as it should in MS. So what we need is a way of looking what goes wrong and finding a way to fix it.

The MS Society is funding a research programme that aims to do this. But, as with most research, the results could be some way off.

Sadly, unlike the Doctor, we mere mortals don't have a blue box that will catapult us to the exact point in the future when the answers have been found and bring them back to the present.

In the meantime, we're going to have to simply continue with our own wobbly adventures through time and space. And perhaps order a round of sonic screwdrivers for the ride.

:: Bigger on the inside by Chris Horst


 * Although I do take issue with the 11th doctor's bow ties: you tried your very best to rehabilitate them, but they still bring to mind that Bullingdon Club photo.

Words

I love words. Just love them.

I did an English degree, I trained as a journalist, I read voraciously. I love language. In moments of stress I love bad language. The more creative, the better.

When I discovered why my body was packing up, I also entered into a brand new world of language. Words like oligoclonal bands, myelin sheath and optic neuritis were both hugely frightening and delightfully musical.

And – in the manner of Carrie Bradshaw – this got me wondering about language and MS.

More specifically, the way people describe the MS community and disabilities in general.

There’s the nicer-sounding words people use while hoping they are saying the right thing. Words like “brave,” “inspirational,” or “warrior.”

They're usually from a good place but can sometimes make me feel like I need to live up to a person I'm just not.

However, they’re a heck of a lot better than “sufferer", "unfortunate” or "invalid." Think about that: literally, not valid.

And, depending on the attitude of the speaker, these are the words that can cause an unintentional drip-drip of damage to your self-esteem or be blatantly slap-in-the-face offensive.

I’ve been lucky, I haven’t been exposed to a lot of language-related nastiness. But there has been one comment that has stuck with me. 

A former colleague once asked me if I was going to have a flu jab. It was autumn time, I heard no warning bells go off, it seemed a perfectly reasonable enquiry. I said I was and received the response: “Oh yes, they give them to your lot don’t they.”

"Your lot." 

Two little words. Just seven small letters implying that I wasn’t with the ‘us,’ that I was somehow different, unusual, exclusive – and not in a good way. 

Not just that, but as if there was some marauding and diseased horde of ‘your lot’ ganging up on the normal, decent, respectable people.

It was a Daily Mail-esque description and made it very clear the damage words can do.

Sometimes poor word choice comes from a lack of understanding, sometimes it's simply a fear of what to say for the best.

But a conscious choice of hurtful words indicates a divisive and dangerous attitude that does nobody any good. After all, if there's one thing we don't need more of, it's division.

So in the way we talk about disability, as well as how we refer to other things in life, we would all do well to mind our language.

:: Words by The BeeGees

These handy guides to inclusive communication have been produced by the Government - it’s almost like they care. 

Protection

It’s our daughter’s tenth birthday this week.

Somehow she is managing to spread the double digit celebrations over four days like some kind of minor celebrity. I'm not quite sure how we have come to this arrangement.

We're celebrating with a Harry Potter/Doctor Who themed tea party for school friends, a frenzied girlie sleepover for out-of-school friends, a chummy curry out for a close pal and an indulgent grandparents chippy tea.

And after all the cake has been eaten, presents unwrapped and cats disentangled from the streamers, we'll do that lovely reminiscing about her birth story thing.

And the story is lovely. Mostly.

It goes like this: I knew I had MS, I’d had it for almost five years when I became pregnant. I told every medical person that needed to know. And some who perhaps didn’t. I was under a consultant, I was being checked regularly. Everything looked fine.

And then, from absolutely nowhere, I developed gestational diabetes. At which point everything changed and I went down a very medical and monitored route which resulted in 20 hours of labour and an emergency caesarean.

But, she arrived safely and all was fine. Well, until the anticipated post-birth relapse which took all feeling from the waist down. But six months after that everything was fine. Mostly.

She has always grown up knowing mummy has an illness – we haven’t hidden it and often it’s impossible to anyway.

She’s played with my walking stick (“Look, I’m being a granny!”), my eyepatch (“Arrrr, I’m a pirate!”) and brought me cups of tea with the guiding hand of hubby when I’m too zonked to do anything but breathe (“Here’s your drink mummy!”)

So among the fumbling hands, the just too tired to play and the visits to hospital, we’ve introduced the meaning of MS on an age-appropriate basis. Or at least we hope we have.

And all the time we’ve been conscious that she is only little and multiple sclerosis is not only a very big word, it’s a very big disease.

It’s an extremely fine line. Honesty is crucial but too much is scary, responsibility is empowering but too much is overwhelming, empathy is a skill but too much is a cross.

Like a lot of parenting, I don’t know if we’ve got it right. I don’t know what she really thinks about it, how it will impact her either genetically or emotionally, or whether she’ll ever resent her childhood.

I don’t know if when she’s older, she will look at me and see a granny or a pirate or someone who needs her help more than either of us ever wanted.

It the end, all we can hope is that we’ve given her enough love, helped her develop enough resilience and protected her enough within the reality of what MS means for us as a family.

:: Protection by Massive Attack with Tracey Thorn

Timebomb

I don't think I'm having a relapse.

It's hard to know for sure because they have, to date, been impressively dramatic affairs. Full of ambulance trips! Intense pain! Or rapid deterioration!

Nothing like a turbo charged MS relapse to add a bit of spice to an otherwise perfectly pleasant day.

But at the moment, I'm just incredibly tired and my eyes feel a bit 'off.'

There's been no obvious optic neuritis pain, no stark loss of either colour or normal vision that I've experienced previously. But given that both eyes have already been damaged, it's hard to know whether this 'off-ness' is new or just exaggerated by exhaustion.

I've been sleeping from 8pm and struggling through anything even slightly taxing in the day. I've been in floods of  tears over a work email - it wasn't even a complicated one, I just couldn't get my brain in gear and in the end decide the only viable option was theatrical weeping.

It's all horribly unnerving. I hate many aspects of MS but the one that causes me the most concern is eyesight. I try not to dwell too much on this because it's not sensible to do so, but for me it's a real fear.

So I am really, really hoping that the tiredness I'm experiencing combined with the oddly gloomy-then-brighter light at this time of year is the cause and it will pass.

I've lived with this disease long enough to know that tiredness and general under-the-weatherness can resurrect old symptoms*, but that doesn't mean I'm completely rational about it.

I suspect it's because a lot of the time we can trundle along, accepting and absorbing the symptoms and subsequent damage into our lives until the different becomes the normal.

But it just takes one patch of uncertainty to remind us that our bodies and brains are the unwilling hosts to a merciless ticking timebomb.

:: Timebomb by Chumbawumba

*The MS Trust talks about the relapse-or-not-relapse in their Managing Relapses guide.

Silent sigh

We talk a lot don't we?

There's a lot of important stuff, obviously: relationships, family, jobs, money, the divisive doom of Brexit.

There's a lot of light waffle: how we felt about the latest series of Love Island, which phone to upgrade to and why on earth more than one woman would want to sleep with Boris Johnson.*

And in between these two extremes are the placatory soundbites that we use to fill the gaps when we're told something completely overwhelming.

Sometimes it's because silence in this situation is just too painful.

Silence allows the unspoken horrors that we cover with our torrent of words rise to the surface and bubble over.

I've seen two friends this week and experienced two ways in which words fall short.

The first friend had some truly heartbreaking news to share. The kind of news that really cannot be healed by words - not even the most well chosen ones. Anything I said sounded like I was just parroting the lines that should be said in these circumstances.

The second friend, who has never quite got to grips with the whole MS thing,  punctuated my mention of overwhelming tiredness and fear-driven cog fog with a dismissive "Oh, I know how you feel."
Gnfff.

But it made me wonder why we feel that the thing to do in these situations is fill them with words.
Is it to try and make us feel better? Make the other person feel better?
I'm not sure that they do either.

The words we have can be very powerful, but now and again they will simply not be enough. They cannot bridge the chasm that lies between us and the person who is suffering in a situation we just do not know and cannot understand.

Quite often the words are about how we think we should react, about our own panic and our own fears. And that is never, ever going to be helpful.

So instead of talking, perhaps sometimes it might be best if we close our mouths. That we just shut up and listen. And truly pay attention to what we're being told.

:: Silent sigh by Badly Drawn Boy

* Answers on the side of a bus please.

Exhausted

Oh my word I'm shattered.

Not just a bit tired, not I've slightly over-done it and a quick nap will pep me up tired, not even I need a week-long holiday tired (just had one, didn't help.)

But really and truly and properly deep bone tired.

This might be due to the following happening in the past 10 days:

• camping. Lovely as the toasting marshmallows and the company was, I was right, it really isn't for me. Made it through one night with the cold and no sleep before giving up and heading home for civilisation.
• a few nights in the Lakes. Beautiful but insanely active. Trying desperately hard to grab every single moment of movement and enjoyment does come with a payback.
• return from hols to a series of emails which appear to consist of other people getting increasing frustrated, arguing in passive-aggressive ways, threatening to quit the project and painstakingly copying me in. (I am freelancing at the moment, it's a new thing and a bit tricky to get my head round.)

I am aware that's a crazy amount of activity so I should be a bit pooped. But the problem with MS (well, one of the problems with MS obvs, as there are a fair few) is that any level of tiredness a normal person may have is leapt upon by an opportunity-grabbing faulty immune system and exaggerated by at least 3 billion. (If tiredness can exaggerate, then so can I.)

MS is essentially a lot of dragging ourselves around in lead-filled wellies through cognitive smog and emotional quicksand. 

There's a lot of cotton-wool thoughts. There's a lot of scrambled sensations. There's an awful lot of yawning, blank stares and missed points in conversations.

However, despite this, I'm not quite at genuine MS fatigue levels.

I'm not yet at the point where I've needed to sleep for 12 hours, crawl to the bathroom then lie on the floor by their toilet for an hour before having the energy to crawl back to bed. That was an enjoyable relapse.

Nor am I at the losing speech point of tiredness or the overbalancing and falling into the kitchen taps level, so I should be grateful really.

But if I don't get a bit of self-enforced shut down soon, it might be the bathroom floor for me again soon. And not in a fun overload of pink gin way either.

:: Exhausted by Foo Fighters

Waterfalls

We're on our hols in the Lake District.

Beatrix Potter! Grasmere gingerbread! Peaceful and powerful water! How lovely.

Reminds me slightly of something I once wrote for my daughter quite a while ago now on an equally watery holidayr:


Immersion

It never stopped that summer.
Rain hammered daily from swollen black skies;
a gathering canopy.

We sulked in our caravan.
Our first family holiday spent bitter and drenched;
heavy shouldered by fate.

Nothing here to delight you, we
fretted above you. Just two years and drowning
under adult surrender.

By the fourth day you'd tired of
chasing beads down the window, of crayoning rainbows
that wouldn't appear.

So you made your own mind up
and bolted for freedom, on tippytoes stretching
to throw open the door.

Unleashed you ran freely, your
happy toes squelching, your whole body laughing
as you blazed round the field.

Our holiday postcard.
Our beautiful daughter.
Dancing barefoot as pierced clouds
streamed rivers from heaven.

:: Waterfalls by TLC

I will survive

Oh dear.
Oh dear, oh dear.
Oh dear, oh dear, oh dear.

Just three more days of civilisation before I embark on a short* camping trip.

My friends have been encouraging me to join them in this so-called tenting joy for a few years and I have, until now, managed to point blank refuse politely decline.

The reasons I have declined are manifold. They're not all strictly MS related, although there's a fair bit of that. They are:

• no sleep. Which to most people would just be a bit of a downer, but for me means trouble speaking and thinking. I don't want to be a incoherent quivering mass under the canvas.
• pain. The chronic stuff that you can sort of live with because that's just how it is, but which is likely to swing into full-on performance action after a night on a blow-up mattress.
• the cold. Yes, I am aware we are on track for the hottest summer SINCE RECORDS BEGAN but this doesn't cater for sleeping outside under a thin covering of fabric.
• grumpiness leading to lack of friends. Grrrrr, I'm not happy when I'm tired, cold and pained. I am concerned that my friends are about to see the worst of me.
• the bugs. Don't mind creepy crawlies generally speaking, just don't want to share my pyjamas with them.
• no sleep. Again. (We're aiming to go for two nights. For some insane reason.)
• just general MS faff. You know, the eating around meds thing, the timing of the meds while somewhere out of your comfort zone thing, the remembering the meds in the first place thing. The lack of familiarity leading to cogfog blundering, the anxiety of forgetting stuff - pants, blankets, husband, the random spasmy nonsense that lands from nowhere and might result in one of those tin dish things (or whatever people eat from when they're camping) being accidentally thrown at nearby children.
• toilets. I'm concerned.

However, and I am repeating this like it's an emotional lifebelt, it might be fine.

I could be a camping convert; it's a possibility. I am slightly excited by the fact we're borrowing my in-laws' tent which hasn't been used since 90s and has curtains and little windows in it.

The friends who invited me have pointed out that I'll have cute melamine cups and plates to play with and a little camping stove to make tea on. They know my weaknesses.

But mainly it's for my daughter who has never been camping and who really, really wants to go. She'll be able to play with her friends and have a little taste of the (almost) wild.

So, for her sake, I'm packing up duvets and painkillers and hot water bottles and repeating to myself: It might be fine. It might be fine. It might be fine.

And if it's not, we're then heading up to the glorious Lake District two days after, which is acting as the water-filled light at the end of the earthy camping tunnel.

:: I will survive by Gloria Gaynor

*but really, not quite short enough

Wide open space

I'm mulling over some big decisions at the moment - and feeling a bit overwhelmed as a result.

I've needed a bit of clear space to try and work things through away from work commitments and household tasks - and unexpectedly, I think I may have found it.

I'd never paid much heed to my parent's desire to get out into the garden or put much stock by their claims of how beneficial it can be.

To me, the garden is a mysterious and threatening realm, a plant-filled battlefield which leaves me feeling so useless that I am likely to give up on it before I even start.

I'm not, at the risk of understatement, a natural gardener, I'm a hack-random-things-back-and-hope-for-the-best-er.
In fact I've been tempted on more than one occasion to apply a scorched earth policy to our back garden/rain forest.

But this week I've been out there. Pulling things up, digging things over the generally preparing the ground.

I've found the concentration on the physical helpful - it's helped clear my mind a little and given me something small and productive to focus on.

I can only hope the outdoor space is giving my internal dilemmas room to breathe.

:: Wide open space by Mansun

Memory of the future

I can't decide if I would like to know how my MS will progress.

Do I want to know about every single problem that is heading my way? Would I like some warning on the symptoms or a heads-up on the relapses? Do I want to know the point at which I'll tip from RRMS to SPMS?

Would it be better to know in advance so I could dial down the anxiety of uncertainty and plan the practicalities accordingly? It might mean a bit of overshadowing the enjoyment of the present with the threat of the future, but at least I'd have some time to, well, brace.

Or is it better to simply carry on without that heavy knowledge? Enjoy the moment and not think about it until I absolutely have to. Not let it take over.

Would knowing when the next bolt from the blue was going to strike be better for my mental health or worse? Would constantly watching the clock gradually count down to relapse tarnish the rest of my time?

I can see the pros and cons of both arguments, I really can and I am very torn on this.

I know people with MS who are firmly in the no-awareness camp. For them, it's a case of not worrying about what might happen because it might never and even if it does, they can't do anything to stop it.

Then there are those who'd rather know. Be able to pack things in when they can, take the trips, expand their family or make the big decisions. Who have the desire to enforce certainty on huge unpredictability.

After 14 years and many relapses, I remain undecided.
I'm very much aware of the argument for simply enjoying every moment. But I think that's separate to just wanting a bit of a hint on what might be heading my way - and when.

However, the whole thing is a moot point, since although there might be prognosis indicators, MS is such an individual and contrary little bugger, we have absolutely no way of predicting for sure.

Our only option is to sashay through the good times and battle through the bad. The rest, whether willingly or not, we have to leave to the hands of fate.

:: Memory of the future by Pet Shop Boys

Take a walk on the wild side

I've been re-reading Philip Pullman's His Dark Materials recently, an epic trilogy of fantasy novels set across parallel universes.

In Pullman's incredible worlds, humans have daemons. These take the form of an animal and are the external physical manifestation of your inner-self.

Obviously I have spent way too much time considering what form my daemon might take* and my perusal of highly scientific online quizzes has sent me skittering from one website to another, eventually leading to a sad animal-human discovery.

And what I've found - although I really wish I hadn't - is that there is an equivalent of multiple sclerosis in the hedgehog community.

It's called Wobbly Hedgehog Syndrome (no, seriously) and it is a neurodegenerative disease which affects the brain and spinal cord of African pygmy and European hedgehogs.

WHS affects hedgehogs in a similar way to the effects of MS on humans. Symptoms of WHS include:

• falling over, often to one side
• tremors
• muscle atrophy
• dysphagia (problem swallowing)
• wasting
• ascending paresis (slight or partial paralysis)
• tetraparesis (paralysis in all four limbs)

As with MS, there is no known cure for WHS. Various vitamin supplements, antibiotic and steroid treatments have been used; some appear to temporarily improve the signs or slow the progression of the disease.

However, as signs of WHS wax and wane, it is difficult to assess the benefits of treatments. Sounds horribly familiar.

Oh the poor Mrs (and Mr) Tiggy-Winkles. This discovery has made me very sad. Turns out that we humans are not the only ones coping with prickly MS days.

:: Take a walk on the wild side by Lou Reed

*I like to think cat, but suspect, more likely, sloth.

Footloose

It's the six-week summer holidays.

Let the complicated jigsaw of work/childcare/clubs/activities/child-swapping with friends/rejuvenating evening gins begin.

And let the absolute exhaustion of co-ordinating all of the above while negotiating the demands of MS hit me like a ton of bricks.

Because while there's no mad-rush-out-the-door for morning registration or finding PE kits (in the cupboard? in the washing machine? on the cat?) or helping with maths homework I JUST NO LONGER UNDERSTAND - there is somehow the requirement to fill the days with fun and exciting stuff.

Days of stimulating summer plans that my daughter will remember for years to come.

Halcyon memories that she can recount to her own offspring while smiling a wistful smile and - perhaps - wiping away a tear of happiness while vowing to recreate them for her own little darlings.

Endless moments of magazine perfection which are out of the grasp of most families, never mind those of us hosting a chronic illness.

It's a summertime struggle to balance the emotional desire to offer every possible opportunity for my daughter while battling the physical demons that stamp all over the reality.

Maybe I should just stop reading articles that showcase frightfully well-turned out families enjoying adventurous outings then picnicking picturesquely. Wearing tasteful outfits and nibbling on superfood salads without spilling the vast majority down their fronts.

Because our six-weeks are way more likely to consist of getting too hot and over-tired in the local park, having to have a lie-down after taking on too much, batting stinging things away from sticky juice spillages, cramming in work, a fair few pj-and-tv-and-collapse days, sudden calls for help from friends or family and quite a lot of unhealthy treats "because it's the holidays."

 And maybe that's okay.

Maybe it's okay to just cut myself some slack for the summer and view the six weeks as a melting pot of mayhem and exhaustion and last minutes and ice-lollies.

That's not a bad memory for my daughter to have is it? A jumble of fun tied up with some help when we need it.

Plus the ruddy footboot is finally off, so that's got to be a good thing.

:: Footloose by Kenny Loggins

Invisible

It's a common conundrum among MSers - the struggle to explain to the outside world why you are feeling horrendous when "you look so well."

The hidden nature of a lot of MS symptoms - the cognitive swamp, the peculiar pains, the altered sensations, the bone-crushing fatigue - are just not that easy to get across.

We are sometime our own worst enemy - desperate to do stuff when we're able, desperate to hide our symptoms at work, desperate to protect our children from the worst.

But sometimes we need to explain the many hidden ways MS can kick us and although words are useful, they don't always get the point across as effectively as pictures

Shift.ms, a social network for MSers, has produced a really useful short film which aims to represent some hidden symptoms. Have a look.

:: Invisible by Alison Moyet

Pictures of you

At the risk of stating the tediously obvious, it's been hot.

It's been so hot that my speech has melted out of my mouth in a waterfall of utter gibberish and my damaged eye has glazed over leaving half the world viewed as if through dirty perspex.

I have been mainly hiding indoors, hugging the fridge, berating my wretchedly hot foot boot and grad..ua..lly  wi....nd.....ing   d....o.....w.....n.

So it has not been the time, one would sensibly think, to head to Hyde Park surrounded by thousands of hot, sweaty bodies to see a collection of bands play upwards of eight hours in the sun with one friend and two people I barely know.

Quite an MS challenge wouldn't you say? Intense heat + failing brain + toilet queue pressures + fatigue + potential for social ineptitude.

And I can't say I wasn't worried. And I can't say I almost didn't go.
But The Cure were headlining and this was their 40th anniversary tour and their only European date. They had sound-tracked a fair bit of my youth; its optimism and upsets, its mistakes, its learning and its intensity. So I went.

And it was glorious. So glorious that I shed a few tears (undercover of darkness when people were too busy looking at the lovely Robert Smith to notice me) because I'd got there.

I'd managed it thanks to the following:

• these instant ice packs - really helpful to bring temperature down quickly
• this UV-blocking umbrella - would NOT have got through without it
• old friends - one who sent me the brolly; one who drove to London and made sure I was okay (and put up with some inane wittering fuelled by relief on the way home)
• new people - who were delightful and hilarious and warm and welcoming and managed to quieten down the "don't sound like a twat, don't sound like a twat" mantra which usually streams through my head when meeting new people - especially when I'm meeting these new people in the kind of MS-heat that would fell an elephant

It wasn't all plain sailing, there did come a point during the afternoon where I knew I was going to struggle to speak coherently and my eyesight was really failing. 

Of course, the bonus of outdoor music is you can just lie back on the grass, shut up and listen - people assume you're thoughtfully appreciating rather than silently cursing Uhthoff and his phenomenon.

However, this was a small price to pay for a day of musical delight and the sudden resurgence of youthful images, bursting like fireworks from a mighty blaze of memory.

:: Picture of you by The Cure