A mixtape for multiple sclerosis

A mixtape for multiple sclerosis

Wednesday, 14 November 2018

The joker

Multiple sclerosis brings with it a whole host of entertaining* features.

Not enough danger in your life? Go out in your highest heels with your worst balance.

Want to feel like you’re studying Latin? Read Pot Noodle preparation instructions when you’re fatigued.

Need to experience more art? Wait for your next bout of optic neuritis and see the world like a Monet painting..

But one of the lesser known entertaining* features is that of the pseudobulbar affect or PBA.

This impressively-monikered symptom is also charmingly known as emotional incontinence and can take the form of involuntary crying, wild episodes of laughing or other highly emotional displays.


We might find ourselves weeping at something only moderately sad, laughing uncontrollably at something only vaguely amusing and in both cases being unable to stop ourselves.

Episodes may also be mood-incongruent: we might laugh uncontrollably when angry or frustrated, for example.

And most entertainingly*, sometimes the episodes may switch between emotional states, resulting in us crying uncontrollably when having sex.

Particularly tricky to explain away the first time you sleep with a new partner.

This particularly messy symptom of MS is caused by lesions occurring in the areas of the brain that govern emotional pathways.

It can be upsetting, frustrating and embarrassing and at present is treated through the use of off-label antidepressants.
.
I don’t think I’ve experienced PBA yet. But to be honest, it’s hard to tell.

I’ve always been a bit emotional, so blubbing buckets at any number of those ‘help the children/animals/earthworms’ adverts is pretty much par-for-the-course for me.

Equally, laughing inappropriately when trying to be stern with my daughter or explain a serious situation is fairly standard behaviour and one that was there before my diagnosis.

Added to which, MS can be a pretty depressing and/or desperately hysterical condition on its own, never mind any sneaky lesions butting in, so how do I know?

It’s a difficult one.

I guess the only way I’m going to be able to tell for sure is if I suddenly start bursting into gales of uncontrollable mirth watching Mrs Brown's Boys.

Then I’ll know it’s definitely time for another MRI.




*by which I mean distressing


Wednesday, 7 November 2018

Overload

Oh dear, I think I've been taking too much on.

What with work, half-term socialising, trick-or-treating, bonfire parties and constructing a Crystal Maze game for the family (as you do) I am in danger of overbalancing.

Not the physical wobble (although there is a risk of that) but overbalancing the precarious MS seesaw.

The one that keeps everything just about in check as long as you learn not to push your luck. Not to take that extra call, plan that extra activity or enjoy that one more late night.

You see, with MS, we all know that the sensible thing is to pace ourselves.

But with MS, we all know the over-riding panic is do it now or we may never be able to.

I don't know at what point I am going to learn to balance the two. But if I haven't learned it in nearly 15 years of living with this energy-zapping disease, I'm beginning to wonder if I ever will.

Probably worth some proper consideration.

But can't stop now. Things to do. While I can.

:: Overload - Alfie Zappacosta

Wednesday, 31 October 2018

The first cut is the deepest

It's Hallowe'en - what better way to celebrate the night of heebie-jeebies than by dwelling on my own unnerving condition?

I've spent some time today wondering at which point over the past near-15 years I have felt most scared by my MS.
  • That very first hospital admission?
  • Hearing the diagnosis?
  • Telling my partner he could leave if he wanted to?*
  • During the decisions we made about having children?
  • Leaving work and feeling useless? Restarting and struggling again?
  • Struggling with poor balance, pain and gradual cognitive destruction?
  • Realising that my eyesight really wasn't going to improve?
  • Wondering if this moment is as well as I'm ever going to be again?

I honestly don't know. And the sad likelihood is, unless some sort of miracle cure is discovered, the most frightening is probably yet to come.

Of course, I'm fully aware this is no way to live a life - trembling in the face of what-ifs - but sometimes these thoughts are completely unavoidable.

And maybe they deserve some consideration.

Being diagnosed with an incurable, progressive disease is frightening. There's no getting away from that.

Once we're diagnosed we realise that, to a greater or lesser extent, fear is a part of our lives now. Fear of the unknown, fear of the known, fear of the damage, fear of medication, fear of progression and fear for our future.

I think we need the chance to acknowledge this dread now and again; to talk about our what scares us and rail tearfully/angrily/gin-sodden against the unfairness and randomness of a disease that was absolutely not our fault.

Sometimes we need these times of overwhelming dark to be able to fully appreciate our light: to see how remarkably we're coping, how strong we became when it was our only option and how very proud we should be of the fact that we get up every single day and carry on.

Perhaps if MS could see what it was up against, it might play a few less tricks. 




* He didn't. We got married.


Wednesday, 24 October 2018

Look at me

I’ve got a cold so logically it’s time to start counting the bruises.

- One from when I overbalanced at my desk and cracked my hip on the printer.
- One from the sink when my legs went weak and I flailed out for the taps.
- One from the doorhandle which I failed to grab properly and instead hit it with my forearm.
- And one from the corner of the bed as I was falling gratefully into it.

Generally speaking when you have MS, sharp edges are your enemy – this danger is doubled when any sort of virus comes knocking.

It’s almost as if the MS gets massively jealous of this newly germed interloper and drags out previous symptoms (in my case balance) to remind you just who should have the attention.

It’s like a toddler screaming “look at me, look at me” until it cries and vomits Haribo on its party shoes.

Depending on my situation, I will either:

* compromise with the toddler (sit down, do very little, avoid walls)
* ignore the toddler (do some work, fall into things) 
or
* give in to the toddler (go to bed. Although apparently without avoiding the frame)

In the end though, like most tantrums, it’s just a case of waiting it out because unfortunately there is no naughty step for this particular scenario.

Although if there were, multiple sclerosis would be sitting there and reflecting on its behaviour FOR A VERY LONG TIME.




Wednesday, 17 October 2018

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.


Wednesday, 10 October 2018

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.


Wednesday, 3 October 2018

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.




These handy guides to inclusive communication have been produced by the Government - it’s almost like they care.