Shake it out

I'm reasonably competent. At least, most of the time.

I can function fairly well in company, I can generally navigate the supermarket (even if they INSIST on moving the yoghurts every time I visit) and I can sometimes get a couple of the answers on BBC 2's boffin-fest Only Connect and then feel super smug for the rest of the evening.

But I'm not sure if I'm quite as with-it as I was when I passed my degree, or when my brain worked on super-speed as a reporter filing court copy up against deadline, or if I'm even simply as mentally able as I was a year or so ago.

Because a nosedive in cognitive function is just one of the many distressing aspects of life with MS and a lot of people experience frightening and frustrating impacts on learning and memory, attention, concentration and mental speed, problem solving and word finding.

So, pretty much everything it takes to get through the day.

Issues are, like most things MS-ey, generally caused by inflammation and lesions in the brain interrupting the transmission of electrical messages along nerve fibres, reducing the speed and accuracy of the information.

My word-finding and mental speed are noticeably worse when I'm tired, have been concentrating for long stretches of time, if I'm surrounded by a lot of noise or after being particularly physically active. 

They're also a bit rubbish if I'm particularly emotional - so any complex problem solving in the run-up to my period is an absolute no-go. 

This cognitive carnage is (literally) on my mind at the moment as I have been offered an unexpected work opportunity which I really should take. I'm lucky enough to be freelancing for one organisation at the moment, this is a chance to pick up some work at another.

But what scares me is whether I am still as able as I was 15 years ago before MS introduced its roadblocks in my brain.

Can my beleaguered Numskulls still find their way around the disrupted neural pathways to make me any kind of decent prospect?

I don't know. I can only hope. I have a meeting about it tomorrow. Everything crossed that I don't say anything stupid/inappropriate/clueless/garbled or simply just forget my own name or why I'm there.

* There is some really useful information about cognitive difficulties along with explanations, support and coping strategies in this online resource from the MS Trust

:: Shake it out by Florence + The Machine

Stuck in the middle with you

Lengthy head/spine scan in a few days.
This calls for some MRI pie.

:: Stuck in the middle with you by Stealers Wheel

Keep on the sunny side

It's been nice, hasn't it, this unexpected sunny weather?

Not for all us, I appreciate. Not for anyone with heat intolerance or anyone stuck working over the Bank Holiday weekend while silently weeping at the loveliness of the outside world, but on the whole it's been really nice.

We've dipped back to normal April temperatures/rain now, but for four glorious days, the weather gave us a glimpse of summer promise and forced us to make the most of it.

And it was my concerted efforts at grabbing the fleeting moments of sunshiney joy that made me consider how rubbish I generally am at appreciating the moment.

I know it's something we're constantly being reminded to do and there's a billion and one guides telling us how to do it, but IT IS VERY HARD, actually.

It's very hard among the work worries, the family plans, the emotional toll and physical constraints of illness, the financial concerns, the news fear, the outside pressures and the failure to understand WHAT THE HELL is happening with Brexit.

And this is from someone in the very privileged position of having a family, good friends, interesting work and being relatively stable (in the scheme of 15 MS filled years) health-wise.

So firstly, I need to count my blessings, and secondly, I need to properly appreciate them. Not everyone is in this position.

But how to appreciate? I found these five pointers through Google (the internet loves a list.)

The article recommends being mindful of your surroundings, beginning your day with affirmations, ending your day on a positive note, being curious and savouring the ordinary.

This would seem to make sense.

So I'm starting small, taking time to notice what's around me. Turns out there is a remarkable amount to appreciate.

The view of our garden (even the overgrown parts), the taste of my favourite tea, the sound of my daughter laughing, the smell of morning air.

The next page in my book, the last of the Easter chocolate, the song for this week, an over-the-fence waft of next door's tempting barbecue selection.

A relaxing bath, cats on my lap, lunch with a friend, stretching out at the end of the day. 

Being in a little less pain than in recent weeks. Not currently relapsing.

It's all there for me to embrace, yet it's not always easy to do so - there are many distracting thoughts lining up to bash into my bubble. But like a long-forgotten muscle, I'm hoping my ability to appreciate will only get stronger with use.

:: Keep on the sunny side by The Carter Family

Paradise

In Cornwall! With my family!
Enjoying Eden, pasties and sunshine in the caravan.

:: Paradise by George Ezra

Untouchable

I've been in a lot of pain recently, which has been rubbish.
Painkillers aren't helping, physio isn't helping, rest doesn't seem to be helping either.

While it sounds horribly pretentious - and I perhaps need a word with myself - my bouts of pain always makes me think of the poem Musee des Beaux Arts by W.H. Auden.

He writes that suffering is an intensely individual and personal experience. As outsiders we can only sympathise vaguely before simply carrying on. And that's if we even notice at all.

In a strange way I find this comforting.

Musee des Beaux Arts 
 
About suffering they were never wrong,
The old Masters: how well they understood
Its human position: how it takes place
While someone else is eating or opening a window or just walking dully along;
How, when the aged are reverently, passionately waiting
For the miraculous birth, there always must be
Children who did not specially want it to happen, skating
On a pond at the edge of the wood:
They never forgot
That even the dreadful martyrdom must run its course
Anyhow in a corner, some untidy spot
Where the dogs go on with their doggy life and the torturer's horse
Scratches its innocent behind on a tree.

In Brueghel's Icarus, for instance: how everything turns away
Quite leisurely from the disaster; the ploughman may
Have heard the splash, the forsaken cry,
But for him it was not an important failure; the sun shone
As it had to on the white legs disappearing into the green
Water, and the expensive delicate ship that must have seen
Something amazing, a boy falling out of the sky,
Had somewhere to get to and sailed calmly on.

                               Landscape with the Fall of Icarus by Pieter Brueghel

:: Untouchable by Rialto

Sweet dreams (are made of this)

Alright, alright, alright, I admit it. I've ovedone things again.

I appear to be absolutely incapable of learning from the past 15 years and have therefore pushed and pushed and pushed until I find myself in quite a bit of pain and with failing speech.

I find it very, very hard to accept that I need to stop. It's a combination of 'oh, I'll be fine' + 'well, I could do it before so why can't I now' + 'denial, denial, denial.'

But when I spent the past week in all-over body pain and finding it increasingly difficult to string a coherent sentence together, I have realised it is time to stop.

It's been a busy year to date - I started the year panicking about my freelancing work coming to an end, worrying about trying to re-enter the job hunt.

So I volunteered with our local MS Society to look after their communications, which has turned out to be a lovely (but busy) thing.

Then an offer of consultancy work came my way, which is also a lovely (but busy) thing.

Added to the usual day-to-day life of cooking, washing, school-admin, family fun, medical appointments, friend-supporting, keeping-on-top-of-Brexit-horror - it's all added up to a bit of a crash.

So I'm stopping. For a while at least. Even if that stopping only amounts to sitting down for a bit in comfy clothing, having a cup of tea and switching off the news for a day.

:: Sweet dreams (are made of this) by Eurythmics
  

Tsunami

I attend - intermittently - a couple of local support groups for people with MS.

They can be informative, helpful and reassuring. But they are not for everyone because they can also be rather overwhelming. 

An intense melting pot of different people, views and opinions from vaying points along the MS timeline - from the fear and optimism of the newly diagnosed to the varied experiences of the five-years-in to the cynical battle-scarred veteran.

Walking into a group soon after diagnosis can be very difficult: while coming to terms with your own news you are faced with people you don't know at various stages of disability.

Of course, as times goes on, you learn that their disability will not necessarily be your disability and their experience is unlikely to exactly mirror yours, but that first meeting can have a massive impact.

Fifteen years into this palava, I think I sometimes forget how I felt at diagnosis. The symptoms are so familiar now, drug names trip surprisingly easily off the tongue and the fear has dulled to a constant low level rather than the insurmountable mountain it was at the start.

So it was a wake-up call on Monday night when a relatively newly diagnosed person joined our group. They were undoubtedly still reeling from the news.

There were welcoming chats and commiserations from around the table and there was plenty of sharing of diagnosis stories, meds experience, MS tips and promises of helpful support. And it was all massively well-intended. 

But when I spoke later to our newbie, it was to hear that any medical appointments they'd been to had left them feeling that they were at the mercy of an information tsunami, overpowered by leaflets and facts and figures.

And, after a bit of reflection, it struck me that it was entirely possible that they might have left the support group feeling exactly the same.

As members of the club that no one wants to join, we're so desperate to support and help anyone who has had the misfortune of swelling our ranks that it can sometimes feel as immense and suffocating as the diagnosis itself.

Maybe some people don't want to hear of yet another helpful leaflet or super-dooper gadget or harrowing lumbar puncture experience. Maybe they're at a point where they've had to process too much.

Support groups can be wonderful - but perhaps they need to come with a warning flag system.

Some people may feel ready to wade into the waves of support. Others might just need to know they're not going to drown.

:: Tsunami by Manic Street Preachers