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