Needles and pins

I've been to London for a couple of days this week with work.

We've launched a new programme aimed at improving the lives of children and young people who live with parents who drink too much.

One of our keynote speakers was the current shadow health secretary Jonathan Ashworth who spoke very movingly from personal experience. (On reflection, I perhaps should have tried to grab him after his speech to raise the profile of MS.)

It was a successful and emotional event. But very, very tiring.

As a result, I have come home with a horribly familiar sensation - pins and needles.

They're in both my hands and - at the present moment - my right foot. They may spread, they may not. Who can say.

In the scheme of MS symptoms, they're at the lesser end of the scale. But they are still rather unpleasant.

And they remind me very much of my first relapse. Which I am finding unsettling.

Funny isn't it? Fifteen years with MS and I think I've mainly come to terms with it. But when I'm tired and emotional - and tingly - the full weight of this disease hits me.

I carried on this week like anyone else - train travel, tube negotiation, hotel booking, dinner with colleagues, important work event - and it was almost like I was a healthy person.

But what's currently needling me is that I'm not.

I thought I'd got used to re-adjusting my expectations, but it only takes one pin to pop the bubble.

:: Needles and pins by The Searchers

Proud

Who doesn't love a bit of silly comedy?

I know I do. And I've been delighted to be able to introduce my daughter to the absolute joy that is Miranda.

My daughter is 10 so a few of the jokes fly right over her head, but at the vast majority she chuckles and chuckles - it's such a lovely sound.

One of the running gags in Miranda (for those of you who haven't seen it) is the singing of Heather Small's hit 'Proud.'

Miranda and her friend Stevie hold aloft a cardboard cutout of Heather's head and bellow out the lyrics: What have you done today to make you feel proud?

And do you know what, among the prat falls, mild innuendo and knowing winks to camera, it's actually a really important question.

When you have MS, there is a huge list of things you can beat yourself up about: I'm letting my children/partner/family/friends down, I can't do what I used to, I have to rely so much on others, I can't work like I used to, I don't feel like I'm contributing, I don't feel worthwhile, I feel like a failure.

Honestly, it's endless. And it's really damaging. Because that list can become so familiar and so entrenched that we are at risk of believing we are nothing but those negative thoughts.

We are all so much more than a collection of can't dos - we are parents who are trying really hard, we are friends who are emotionally supportive, we are workers who are battling to do a good job, we are children who are caring for our parents, we are people who are just trying to live in the best way we can.

And we do this while dealing with a bloody awful disease. That in itself should be enough to make us feel proud.

But if it isn't, if we need more proof, then perhaps we should consider what we have done today that has made us feel proud.

Had a shower? Proud.
Made that phone call? Proud.
Fed your family? Proud.
Been kind? Proud.
Got through a day with MS knowing you'll have to do the same tomorrow? Proud.

So thank you Miranda - for the chuckles, the clumsiness and helping me find the pride.

:: Proud by Heather Small

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