Killing in the name

As lockdown has limited our opportunities to socialise more widely, we as a family have found out quite a lot about each other.

The vast majority of this has been extremely positive.

I have discovered (as I always suspected) that my husband is hugely respected and relied upon at work. I've stood listening to his Teams conversations is awe of his patience and knowledge.

I have confirmed that my daughter has a remarkably long fuse and is thoughtful, creative and pretty resilient.

What she has found out about me cannot be described as flattering, but does, nonetheless, amuse her hugely. And that is that "mummy likes angry music."

She's got a point. She's realised this on a couple of musical roadtrips. As we're not using our cars anywhere near as much as usual, we have taken her on a few pootles to nowhere in particular just to keep the engines ticking over.

There's usually a stack of CDs in our cars (yes, we are that hi-tech). Husband's tend to be pop, disco and generally quite calming. Mine are on the indie, punk, rock side of things.

Or, as my daughter would categorise, angry and shouty.

To be fair, she's got a point. There's quite a bit of hollering in my collection and some rather choice lyrics (although please note I have not played her this week's song).

Not sure why this is. Perhaps I have a huge reservoir of untapped rage that I only feel safe to express through someone else's musical explosions. It might all be simmering away in my subconscious.

Come to think of it, I do have recurring dreams in which I'm an assassin. These are great by the way, a particularly vivid one seeing me chase down Idi Amin with a machine gun in our local leisure centre.

Then there was the one where I was a samurai on horseback, slicing my way through an oncoming horde.
Maybe I need a touch more warm milk before bed.

But I view these car-based outbursts of musical anger as a healthy way to express my feelings, without causing actual physical damage to the nearest window/crockery/despot.

Aaaah, lockdown life, things you never knew you never knew. And maybe didn't want to ever discover.

:: Killing in the name by Rage against the machine

Into the great wide open

It was my daughter's last week at primary school this week.

It's been very emotional - not least because she's left in such peculiar times.

Covid has meant no goodbye disco, leavers show or summer fair.

It has also stopped the little rituals of writing on each others' shirts, group photos* and hugs in the playground.

She's absolutely loved her experience at primary and we've had a fair few tears.

As parents we're quite wobbly too and utterly bewildered by how quickly the time has gone and how much she has grown.

Neither of us are really ready for her to move out of the safety and familiarity of primary and into the vast unknown world of secondary.

But life is about change and movement. The chances of standing still are remote - and it's something we all need to learn how to deal with.

Logically as adults we know this, but it doesn't make it any easier (or any less tearful) when primary school comes to an end.

We've got the summer hols to enjoy now and to prepare for the next step and all the differences it will bring.

In a world that has become increasingly unrecognisable, an ability to change and adapt is going to be more important than ever.

:: Into the great wide open by Tom Petty and The Heartbreakers

*Although we did manage some class bubble shots outside the school gates. All in their Leavers 2020 hoodies. *Blubs unbecomingly*

A forest

It has to be said that I am - without doubt - one for getting bogged down in the detail.

Bit shaky on the bigger picture.  Not great at seeing the wood for the trees.

At the minute, I have a pretty big wood that I can't see in the form of making a decision about my next MS meds.

I know I need to start some new ones. Tecfidera is sadly not working - as evidenced by relapses, scans and depressing conversations with my neurologist.

I'm JC positive so that limits my options and after reading and comparing what was left I had, in February (pre-Covid hitting the UK) decided on Cladribine.

However, thanks to the virus, the chances of a hefty immune-suppressant being prescribed any time soon are pretty slim.

If I did want to pursue it (which my neurologist isn't recommending) I'd need to wait a few months - and then be at risk of shielding if we get a second Covid spike.

Humph.

So my current option is Gilenya and I have a few reservations about it - which are rapidly growing to tree-size concerns.

The problem is that I am reading as much as I can find, looking at every little potential problem and what-if. Rather than focusing on the bigger point, which is surely: that Tecfidera isn't working and here's something that might.

I don't know, maybe I should just stop reading stuff and say okay. A friend of mine with MS has done this and just accepted the meds suggested without reading the fine print.

I think that's quite brave and I almost wish I was that kind of a person. But I'm not, I surround myself with trees.

On that subject - and at least this is one set of foliage I can do something about - our back garden is just beyond overgrown.

So we're having gardeners in next week (hopefully, be kind weather) who offer one of their services as as "jungles cleared."

If only there were people I could call in to sort out my MS wood.

:: A forest by The Cure

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

Hanging on the telephone

Due to the ongoing gah of the coronavirus, many people have had their usual medical appointments cancelled, postponed or otherwise disrupted.

I'm no exception, which although not disastrous compared to some peoples' experiences, is a bit of a pain.

This is because:
a) my current drugs are not working and I need referring for others
and
b) my neurologist hasn't seen and assessed me for 18 months.

However, I have heard that my July appointment is (touch wood) happening and is likely to be over the phone.

This does mean that while I will be able to talk to my neurologist, it's not the same as having a physical examination - which is surely more helpful to everyone.

However, it can't be helped and it does mean I will avoid these jolly little tests:

:: Hanging on the telephone by Blondie

The times they are a changin'

One of the many, many things Coronavirus has wrought upon us is a soundbitey phrase which is being repeated ad infinitum by politicians, the press and, increasingly, the public.

The "new normal" is now being bandied around like some sort of breakthrough wisdom, spoken with a near reverence for the way we're all going to have to radically adjust and adapt.

And yes, we will, there is no doubt. But for members of the chronically ill community, the concept of new normals is anything but new. We experience them with unwelcome regularity.

If I may take my own 16 years as an example:

• new normal: loss of confidence. Struggling with cognitive function, logical thinking and the easy retrieval of names, places, words, connections and directions is horribly familiar to people with MS - as is the subsequent questioning of your own capabilities. 

• new normal: loss of opportunity. I still work, but it’s not at a high level. It's hard to see how working part-time between relapses and increasing disability will lead to any huge career responsibility. Bye-bye security, bye-bye potential, hello enforced working life rethink.

• new normal: loss of choice. Ok, to be fair, it's not completely lost, but it is constrained. And it relates to the smaller things like a trip out (what's the accessibility like, where are the toilets, the resting places, how are the queues, what's the noise level like, how about the lighting) to much larger life decisions.

• new normal: loss of vision. Three bouts of optic neuritis have left me with damaged sight. There are many, many frightening impacts of MS, for me vision issues are very near the top.

• new normal: loss of control. MS hands make for poor tools. Fortunately for my communication needs, there is voice activated text. But, as I discovered during one memorably sweary exchange, my phone asterisks out the naughty words.

My personal tally of new normals have gradually increased over the years as my MS has progressed. And with each there has to be a grieving process to allow us to adapt and survive change. 

Our society's new normals will require the same process - for some it will be manageable, for others it will be very, very tough. 

But if those of us who are chronically ill have anything to share, it is knowledge, advice and experience. Because we have become the reluctant experts in this sort of normality and for us, it's just not new.

:: The times they are a changin' by Bob Dylan

The way it is

We were meant to be in Menorca this week.

It was going to be the first time we'd taken our daughter abroad; but thanks to Covid-19, we are here and not there.

So, what to do?

a) be grateful we're well
b) accept the circumstances
c) check the weather...
d) ...and confirm the temperature here is EXACTLY THE SAME AS IT IS THERE
e) blow up the paddling pool
f) pull on the swimsuits
g) use our imaginations because
h) is for holiday

:: The way it is by Bruce Hornsby and The Range