A little time

Well-meaning friend: Feeling any better?

Me: Thanks for asking but no, no I'm not. And it'll be a while before I am.

Well-meaning friend: Oh right, another week or so?

Me: Erm, unfortunately no, it'll be more like another few months.

Well-meaning friend: Oh right. It's just that it's been about a month already. You must feel slightly better.

Me: No. Sorry. (Why am I apologising?)

Well-meaning friend: So you still can't feel your fingers?

Me: No.

Well-meaning friend: Stomach?

Me: No.

Well-meaning friend: Legs?

Me: No.

Well-meaning friend: Oh. Wow. That's pretty unbelievable.

Me: No.

Well-meaning friend: But you don't look any different. I thought I might be able to see something.

Me: Nope. Just me.

Well-meaning friend: Wow. What can I do?

Me: Nothing really, but thanks very much for asking.

Well-meaning friend: Okay, if you're sure. Let me know though.

Me: I will, thanks very much.

Well-meaning friend: No probs. I'll text you in a couple of days, see if you're feeling any better.

Me:

:: A little time by The Beautiful South

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. 

Do you want the truth or something beautiful?

I’ve just been on a lovely hen weekend with a small group of girlfriends.

There was drinking (afternoon tea and the stronger stuff), eyebrow raising lady chats and, of course, ridiculous willy straws.

And among the cafe stops, spa swimming and general amusement, I almost forgot that I’d been quite worried about the entire experience.

I’d been worried for one big reason: it was a weekend away with friends who know I have MS, but who don’t really KNOW I have MS.

A couple of them have seen me when I’ve been pretty rough, but the other four haven’t. And while I try to keep the optimistic ‘I’ll manage, I'll be fine’ mantra going, it's starting to occur to me that maybe I shouldn’t do this.

Because then my struggles with walking, talking or thinking wouldn’t come as such a shock. An unknown issue for my friends to suddenly try and accommodate. The unexpected spectre at the feast.

The endless balancing act of MS is as emotional as it is physical. And quite often it's one we keep to ourselves.

To live with a chronic illness means to adjust your physical activities, weigh up your energy, eke out your reserves.

But it also means finding an emotional equilibrium between the stark reality of what this disease does alongside the optimism that is being seen as increasingly important in our experience of it.

Frankly, it’s exhausting. And if we wake up like this, where does that leave us for the rest of the day? (Or the rest of the hen weekend?)

Sometimes I wonder if it would be better to just tell the truth. To do what the wonderful Caitlin Moran does and share my full visceral experience. An experience which at present, I am fully aware, is not as bad as it could be.

So should I just start to be honest about my fears? About my drugs causing night sweats, hot flushes or such an over-production of saliva and mucus that I feel like a leaking sieve most of the time? 

About the spates of repeated UTIs? About the middle-of-the-night despair? About the vomiting from fatigue? About employment panics? About my hands being too numb and shaky to competently insert tampons resulting instead in Tarantino-esque bathroom blood wreckage?

Perhaps if I was brave enough to tell the truth, then the wobbly legs from a cold walk into town or the struggle to speak after the heat of the pool would be out in the open and not a hidden issue.

Yet if I did tell the truth then we’d all have to face the havoc that this disease is wreaking. 

And that’s not attractive. Especially on a fun and celebratory weekend away.

The truth of MS isn’t pretty and that’s a very hard thing to tell – to our friends and to ourselves.

:: Do you want the truth or something beautiful? by Paloma Faith

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.

Mr Brightside

Perspective. Comparisons. Sliding scales.

They’re all interesting phrases when applied to the way you view things – wealth, achievements, career, family, life. Illness.

Like a number of chronic diseases, the perceived seriousness of MS sits on shifting sands depending on who you speak to.

Perhaps you’ve dealt with reactions from people at the oh-it’s-not-so-bad end of the scale. They’ve seen someone being amazing on the Paralympics with it. Or know a friend’s mum who has had it for 25 years and still doesn’t need a walking stick. Perhaps they know someone who works fulltime and goes to the gym every other day?

On the other hand, perhaps they’re at the other end of the scale and they’ve got a pretty bleak outlook for you. Maybe they’ve cared for someone with the primary progressive form? Watched someone deteriorate before their eyes? Seen someone in the end stages of MS?

It’s entirely possible you’ve dealt with these – and many opinions in between – from the medical community.

During the summer I saw a gp I don’t normally see. He asked how I was generally and we had a general chat about MS and recent research.

He concluded by saying it would be good for his newly-diagnosed patients to see me still working and with a family.

“Because really, for you, it’s just an inconvenience,” he finished. With a reassuring smile, believing he’d said the right thing.

And, if I take a deep breath to calm down and think about that proclamation, then to some degree he was right. I’m currently not hugely debilitated. I still work, drive and most of the time I appear to function like everyone else.

To a gp, who is bound to come across far more aggressive cases, he may well believe he could describe my MS as ‘an inconvenience’ and there’s a little bit of me that sort of accepts that.

But to me an inconvenience means a flat tyre or the radiators needing bleeding or running out of teabags.

It does not mean slipping down the workforce ladder because I know I couldn’t manage it or missing most of the things healthy people take for granted or making the painful decision to not extend our family.

None of these things would I describe as ‘an inconvenience.’

So while I do recognise that I am somewhere in the middle of the health-death track bar, I think we would all like recognition of our own personal scales and a bit more consideration of what might actually count as our inconvenience.

:: Mr Brightside by The Killers

Help!

I get the train to work.

I like it. Generally it runs on time, I get a free newspaper and I can people watch (one of my favourite things.)

It also lets me wind down after a day in the office and I can think about dinner/read a book/switch off without causing a road accident.

This week it’s also let me do a little bit of thinking about employment, employers and some of the practical help I’ve needed to keep me in a job.

My working life has seen me in the private then the public and now the third sector – quite a variety, but the one common thread is that it has never been easy being at work and having MS.

Surprisingly however, some of the hardest battles I’ve had weren’t with my employers – who have generally been quite understanding and supportive, if a little bewildered by the vagaries of the condition – but with the people ostensibly put there to help.

Access to Work was a particular struggle. Great idea, rubbish execution.

Not the lovely man who came to sort me out with fancy office equipment and an impressive James Bond-esque villain’s chair. (Although still slightly disappointed by the lack of ejector seat, take note office suppliers.)

But the woman on the end of the phone being incredibly difficult about the process by which to claim transport to the office. The woman who quite clearly didn’t believe I was unwell even though I had a letter from my medical team, copies of my scans and occupational health reports. Plus I had wobbly tear voice on the phone so it must have been true.

Perhaps I just got a jaded fed-up worker, perhaps she’d seen a few scams (although the whole flippin thing is so complicated and exhausting I almost, almost, take my hat off to anyone who can scam the benefits system) perhaps I was unlucky enough to just speak to a bit of a jobsworth.

Perhaps she was secretly just trying to save me from the taxi drivers. This may have been it as the taxi/passenger conversations during the time I needed to use cabs were quite eye-opening.*

Or perhaps I should stop excusing her.

Perhaps people who deal with claimants with chronic variable illnesses could do with a bit more training and understanding about chronic variable illnesses.

That would seem to make sense.

:: Help! By The Beatles

*They ranged from the mundane – weather, potholes – to the wholly unexpected; marital guilt (theirs), how to fiddle taxi claim receipts and the fertility issues of two separate cabbies. I unwittingly became a trapped confidante in some sort of mobile secular confessional.