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.

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. 

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.

This is hardcore

As they do for so many things, the French have a phrase for it.

And in this case, the phrase is ‘la petite mort’ which quite literally means the little death.

Interestingly, in modern usage it also refers to the sensation of orgasm. But that interpretation is not going to be the subject of this post, I am not late night Channel 4.

Sexual references aside, it can be used when an undesired thing has happened to a person and the experience has affected them so much that "a part of them dies inside.”

And I've been contemplating my own MS-related petite morts recently. It’s been a cheery time.

It’s hard to rank the little deaths because how does, say, loss of speech compare to loss of spontaneity? Or loss of potential stack up against loss of memory? Or loss of sight versus loss of confidence?

Perhaps we need an MS Fight Club to sort it out. (The first rule of MS Fight Club is… oh hang on, I’ll remember it in a minute, it’s in there somewhere.)

Anyway, it’s whiled away a few moments and I’ve decided that I can’t rank them, but I can report them.

• Loss of confidence – a bit of a slow creeper this. When I was diagnosed at 27 I was a journalist, knocking on doors, covering court cases, writing to daily deadlines, getting chased up streets - all the kind of stuff you may imagine, but I was nice with it. Honest. Over the following 13 years, as my cognitive symptoms increased, my confidence has been gradually eroded. Struggling with names, places, words, connections and directions is horribly familiar to people with MS - as is the subsequent questioning of your own capabilities. Most of the time I can't work out which way to turn the front door key and stand stranded on the doorstep, simply marvelling at my competent former self.

• Loss of vision – gah. Three bouts of optic neuritis have left me with damaged sight and colour vision. There are many, many frightening problems in MS, for me visual issues are very near the top.

• Loss of motor control – it all went down my right hand side during a relapse in December 2013 and didn't return for 16 very long months. I couldn’t manage simple tasks without a fight – doing up buttons, writing, chopping veg, plaiting my daughter’s hair, texting or applying eyeliner in any kind of acceptable fashion. Fortunately for my communication needs, there is voice activated text. But, as I discovered during one memorably sweary exchange, it asterisks out the naughty words.
Bl**dy useless when trying to give full vent to the bu***ry bo****ks relapse.

• Loss of direction – not just literally (although I’ve given up being able to take in journey instructions) but employment-wise. I work, but it’s not at a really high level. It's hard to see how working part-time between periods of sick leave will lead to huge responsibility. Bye-bye security, bye-bye potential, hello enforced working life rethink.

So these are some of my MS losses, and as with all deaths, there has to be a grieving process to allow us to survive change. Each relapse brings its own petite morts and its own need for grief. 

We lose, we grieve, we lose, we grieve - in a progressive disease it’s one way street. 

Gain acceptance of the last loss, start grieving the next. 

Again and again and again.

Plus ça change, as the French would say.

:: This is hardcore by Pulp 

Hope of deliverance

Continuing my string of hospital visits - four in 10 days, it’s some kind of personal record – I’ve recently had an eye clinic appointment.

This one was to discuss the optic neuritis damage/recovery from my relapse in January.

I’ve hated this relapse. It’s not like I have ones I love, let’s be honest, but this one has been a truly depressing one.

Eyesight is a particularly terrifying one for me: I’m already quite short-sighted, I have posterior vitreous detachments in both eyes and there’s a family history of glaucoma. The cards do not feel stacked in my favour.

I have also failed to find an eyepatch which at once says cutting edge chic and devil-may-care. Although my lovely work colleague did buy me a red lacy boudoir-esque one which may yet come in useful if I’m ever invited to a certain kind of niche party.

The results of this one showed that in the past 10 months I’ve gone from not even being able to see the board on which the eyechart is mounted, to being able to read the third line from the bottom.

My colour vision doesn’t have quite such happy news though – I couldn’t make out any numbers on the colour blindness chart in January and it’s still a struggle to discern half of them. This I knew as I’m aware my left eye sees the world in watercolour not acrylic, but it’s still a bit sad to have it medically proven by the surprisingly old fashioned flip book.

But I’m going to remain doggedly positive as I still have the potential of two more months of recovery, having been told ON can take up to 12 months to recover, if not longer. I cling to the longer.

What astonishes me though (apart from the body’s ability to recover in the relapsing phase of MS) is the time discrepancy between the damage occurring and the subsequent recovery time.

First relapse: 30 minutes for left hand side to be knocked out, six months for recovery.

Biggest relapse: 40 minutes for speech and all motor control down right hand side to go, 16 months for recovery.

Optic neuritis: 60 minutes for vision to go, 10 months (and counting) for recovery.

I say recovery, it’s actually never been 100 per cent, but it’s been okay and to a level I can live with, but good heavens why must it take so long?

Be patient is a mantra you learn to live by when you have MS. Be patient and keep hope.

So that’s what I’m doing for my eye. I will wait and hope and wait and hope until the time shows that recovery will be incomplete. And then maybe I’ll just wait and hope a bit more.

:: Hope of deliverance by Paul McCartney

Waterfall

We spent our half term at Butlin’s.

Ooh, it’s technicolour mayhem, but we love it. For my daughter, it’s great, it feels safe and is full-on entertainment with a week of mummy and daddy agreeing to pretty much everything she wants to do.

For my husband it’s great as he gets to eat huge breakfasts every day and see Billy Bear on a regular basis. He’s a big fan of cuddly toys that speak – we have quite a few in the house. As I suspect our daughter starts to become too old to be the excuse for his cast of voice characters, Billy gives him an outlet.*

For me Butlin’s is great as we’ve been a few times so the whole process is massively familiar thereby lessening cog fog worries and if I’m well enough, I can swim at any time I want to.

I’m at my happiest in the water. Alright, I can’t feel the temperature until the water hits my chest, but this is a plus because even the cold local pool feels like Barbados from bra level down.

So we swam every day and did, indeed, have a splashing time.

I even had the energy to go on the slides including the slightly insane Space Bowl which shoots you down an enclosed green tube and into what can best be described as a gigantic goldfish bowl which you circle in an ungainly fashion before being ejected at frighteningly high speed into a plunge pool.

Fortunately, being short sighted, I had to take my glasses off to go on the ride and therefore avoided seeing the faces of the spectators when I pitched half-laughing, half-shrieking sideways into the blue. I was a lycra-clad chlorine triumph.

But it took me the whole four days of swimming pool going to pluck up the courage to go on the Space Bowl.

It wasn’t the inability to see things clearly (myopia + optic neuritis have made me used to that), nor was it the warning signs stating “this ride is not recommended for people with medical conditions.”

It was more the belief that I could still be the person that could do that kind of thing; that I didn’t have to be limited – for the time being at least – by my physical or emotional state.

It was also a nod to my own longed-for signs of recovery, a weird little waterfall feeling in my head.

The first time it happened I was petrified, my entire head felt like cold water was coursing endlessly through it and I was sure another relapse was happening.

I was told once that the feeling signifies nerve pathways coming back to life. I don’t know if this is true, but my head waterfall only tends to happen during recovery so I might continue to believe it.

So cheers to the Space Bowl for making me happy. And cheers to the waterfall, long may it run.

:: Waterfall by The Stone Roses

*Although he has started to refer to Billy Bear as Champagne Billy for reasons best known to himself. It’s entirely possible that in my husband’s head, Billy Bear has a trust fund and plays polo.