Do I wanna know?

A lot of MS is about what happens in your head.

For literal reasons - it's a disease that wreaks havoc on the brain.

And for more metaphorical ones - it's a disease that wreaks havoc on your mindset.

When the rot first set in, all those 18+ years ago, one of the first questions I had was what was going to happen to me?

Would I lose my eyesight? Would I need a wheelchair? Would I be able to have children? How bad would it get?

All understandable reactions to being told you have a progressive, incurable disease when you're in your mid-twenties. 

As time as progressed, the questions become less frequent and have shifted in focus, but are nevertheless, still there.

And occasionally, among the mayhem of everyday work and family life, I do stop to wonder again.

Wonder how much time I have left for reasonable health, how much working ability remains and how much we should do something now and not gamble on a later which may be fraught with far more difficulties.

These are sensible things to consider and it's possible that I really should take a step back and plan a bit more, rather than just being aware of them as vague concerns.

But to do so would risk upsetting the mental status quo I have (relatively) successfully achieved for quite a long time now.

If the choice was given to me to know just how and when things will get worse - would I want to know?

I'll be honest - the answer varies. 

There's something to be said for living in the moment and not spending too much time picking at scabs. It's quite freeing and probably better for my well-being.

But I am, at heart, a planner and certainly resonate with the sentiment of forewarned is forearmed. Even taking into account the self-knowledge of an extreme worrier.

So, on balance, yes, probably, I would want to know. But I very much see why others wouldn't.

However, until such time as medical crystal balls appear, we're all in the dark.

Looking for the occasional lightbulb moment and feeling our way through the best we can.

:: Do I wanna know? by Arctic Monkeys

My silver lining

I'm having one of those horrible periods of worrying about a work thing.

Made somehow worse because I'm actually on leave this week and I'd really been looking forward to the break after being unwell with UTI-Covid-jab-reaction-shingles triple whammy.

But instead, I'm worrying.

I can quite easily get suckered down a wormhole of worry when it comes to work, despite my husband patiently talking me through why I perhaps don't need to.

But worry I do. I always have.

And I worry about work in a way that I don't when it comes to MS.

I will obsess about work - should I have done this, should I not have done that. What impact will my decisions have, what reaction will it cause. What if, what if, what if.

I obsess much less about MS.

I have often pondered about this difference - after all, of the two, it's MS that's with me longer and will hit me harder.

Perhaps that's the crux of it, perhaps it's almost too big to deal with and so out of my control, that worrying seems almost pointless.

I don't know. Perhaps the worrying about work is actually a really helpful distraction from the worrying about a cruel and relentless disease from which there is currently no escape.

Ugh.

So when put like that, perhaps I should view this current work worry as actually a (still quite rubbish) type of shiny silver lining, deflecting my attention from what is actually the much bigger issue.

:: My silver lining by First Aid Kit

Just like a pill

 I need to start new drugs.

Tecfidera, that friendly little green (blue? aquamarine?) pill which has been with me twice a day for more than three years now, is no more.

My latest MRI scans and two relapses in eight months show that I need something more effective.

So I'm supposed to be swapping over to Cladribine at some point soon. However, this depends entirely on:

* my lymphocytes returning to a normal level

* the two hospitals I'm under communicating with each other

* the coronavirus infection rate which could well dictate whether or not I can start

All three requirements are things that are completely out of my control. And I don't like it.

You'd think I'd be used to having no say over this aspect of my life - more than 16 years of unpredictability should have sunk in by now.

But it's hugely frustrating and what concerns me is the unknown length of time I will be without any meds versus the ever-present risk of a relapse.

It's a bit unnerving.

So, to deal, I am taking on extra work hours (distraction and alternative worry) and reading dystopian fiction (distraction and someone else's worry.)

Not perfect solutions, but in an imperfect situation they will have to do.

:: Just like a pill by Pink

Don't speak

Unexpectedly, I have picked up some new work while in lockdown.

This is great, obviously, but also quite scary. I'm trying to pick up new stuff via technology I've not used before with people I can't meet.

It means all those new-work questions that you can usually grab someone and ask in the kitchen, now have to be via email/Teams calls or chats.

And it's a VERY busy team so I have no way of knowing when I'm interrupting people as there are no in-person clues.

It's work similar to that I've done before, but not for a very long time and I'm both out of practice and out of confidence. Plus my memory is not what it once was.

As such, I have found myself getting quite stressed out (never a good plan for MS) and very tired.

Both of these states of affairs combined last week into a Teams meeting in which I had spectacular MS word vomit.

Words were there - but not necessarily in the right order.
Meanings were clear in my head - just not necessarily once they left my mouth.
Hands were flapping - trying desperately to form representations of what I was trying to articulate.

It wasn't a good impression. And there was absolutely no chance of styling it out in a Virginia Woolf-esque stream of consciousness.

Oh no.

Trying to take a breath and ask myself some key questions:

Could it be going worse? Well, yes.
Could it be going better? Unquestionably.
Could I do it via mime? Tempting.

:: Don't speak by No Doubt

Don't you worry 'bout a thing

My daughter said a lovely thing the other day.

Not a grand proclamation of love, not a universal message of kindness and friendship and not even an announcement that she was doing her homework unprompted. (Although to be fair to her, she does do two thirds of these things; we’re working on the homework.)

No, it was: “Mummy, sometimes I forget you have MS.”

It was such a simple sentence, but such a great thing to hear.

Not because I want her to live in denial, not because she thinks I’ve got better, not because I hide it from her, but because I want her to be able to forget. If not all of the time, then certainly sometimes.

I want her to know that although MS is there, it won’t take her over. That my illness has never been her world, her responsibility or her fault.

It’s not easy. She’s a thoughtful and sensitive child who is very conscious of other peoples’ emotions. Who knows if she always would have been this way or if growing up with MS has made her more empathetic.

It is incredibly difficult for a child to grow up with a parent affected by any sort of ill health. A parent who cannot always be consistent, a parent whose future is uncertain, a parent who might appear to be leaving you bit by bit, day by day.

That’s a pretty hard mix to get to grips with as an adult – almost impossible to imagine how it must be for a child.

What we’ve found helps as a family are these simple things:

* honesty – our daughter knows that mummy’s body doesn’t always work properly, that she might need to take sudden rests, that she takes medicine, that sometimes she has to miss things. Age-appropriate honesty and open conversations can help stop or lessen some of the imaginary fears.

* attitude – having limits is nothing to be ashamed of, we all have them in varying ways. But recognising and readjusting your limits then carrying on with pride and confidence is a really good message.

* planning – children need to feel there is always someone there for them. If I can’t do a school pick up or party drop-off then we ensure a family member or friend can. It may not stop the worry that I’m not able to do it, but it eases the uncertainty a bit.

* appreciation – being able to live in the moment is something kids can do really well. I’ve learned a lot from her on this and we often talk about all the things we are grateful for. A friend has a daily positives blog which does this fantastically well and it really makes a difference to your mindset.

* love – she will never be short on this.

I know my daughter worries about me, I know she probably always will. But just for the moment, I’m glad she’s able to forget.

:: Don’t you worry ’bout a thing by Stevie Wonder

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

Walking on broken glass

Thanks universe.

No really, thanks.

Just to keep my worry cells busy, you’ve given me this.

It’s only four little words, but they mean such a big amount.

“I’ve found a lump.”

And I have, in my breast. I have been fast tracked to hospital and I genuinely don't know how to deal with this.

:: Walking on broken glass by Annie Lennox