My brave face

Up at a hideous time this morning for a large work meeting in London. Lots of expectations, website data, project milestones and presentations to a number of new people.
This is all a bit unfortunate as I am feeling particularly rough.

Clearly a situation that calls for the careful application of camouflage make-up.
(And maybe a slice of pie.)

:: My brave face by Paul McCartney

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.

Wouldn't it be nice

I've just been to the dentist to have a filling replaced.

Yes, you see, this is why you read this blog, for these glamorous little insights into my life. I've also done a full load of washing and planned the meals for the week.

Anyway, I started the appointment by dutifully updating my dentist on my recent medication change.*

Now bearing in mind I have seen this dentist for a number of years, completed endless medical screening questionnaires provided by the surgery for their records, explained to him a number of times I have MS and taken him through why infections are so potentially dangerous, he still looked blankly at me and asked what I took medication for.

Deep breath.

“I have multiple sclerosis,” I said for quite possibly the 27^th time. Maybe I should make it into a little La La Land-esque show tune, he may remember if there was a charmingly nostalgic song and dance routine attached.

“But you look so (and I waited for it, fully expecting the w-word........) nice.”

Erm, nice? Did he say nice? Not, perhaps, well? I replayed the moment.

No, he definitely said nice.

This stumped me so I mumbled something incoherent about hidden illnesses and sat down in the chair. 

I felt ~ great word alert ~ discombobulated by this pronouncement. I'm pretty sure he didn't mean 'nice' as in attractive as I was wearing far less than the usual amount of makeup that I generally rely on to be classed as passable.

So what was it? Was it an unconscious choice of words that passed some sort of judgement on the kind of people who should get ill?

I wonder just how many people share this bias; that looking – or being - nice should somehow protect us from any unpleasantness in life.

That crappy things are only meant to happen to people who look a bit, well, unpleasant?

Or am I over-thinking it and did he actually mean to say the usual ‘well’ but got a bit flustered at dealing with a disabled person? 

I didn't have much time to ponder it as a few minutes later, patched up, I went downstairs and looked at the bill.

And I can assure you my internal language was anything but nice. AND there was no sticker.

:: Wouldn't it be nice by The Beach Boys 

*Tecfidera update: I'm suspicious. I upped to the full dose yesterday and bar a very minor flush and prickly skin incident, things appear to be oddly quiet. My Tec diary tells me to expect the peak side effects in week 3 though, so I'm trying not to get lulled into a false sense of security.