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