Cold hands (Warm heart)

So, let's talk snow.
There's been four days of relentless sky-swelling deluges where we live and as a result even the most unloved streets look like Christmas cards.

So white, so pretty, so perfectly pristine.

So effing, effing cold.

Good lord, I hate the cold.
And, by logical extension, the snow.

Yes, I know that makes me sound like some sort of selfish weather Grinch who isn't thinking of excited children's hopes* for fun days of gambolling in the park with sledges! And snowballs! And cheery snowmen with wonky carrot noses and scarves stolen from indulgent grandparents.

But there's a good few MS-ey reasons why I have come to hate the white stuff that spread far wider than the travel disruption, the school closure palava or our cats whining incessantly that they don't want to go outside and relieve their distended bladders and glaring at me as if the whole sorry mess is ENTIRELY MY FAULT.

And these reasons are:
* legs seize up leading to painfully slow progress
* brain seizes up leading to, er, painfully slow progress
* speech slows down leading to garbled pleas for help, immense frustration and flapping of increasingly stiff arms like some sort of deranged penguin

The reasons why the cold causes such difficulties have been outlined in this interesting and helpful article from the MS Trust.

For the moment, at least, it looks like the cold snap is here to stay. So while it is, I'm bundled up in layers, working from home (typing in fingerless gloves like some sort of modern day Bob Cratchit) trying to regulate my temperature with a constant supply of tea.

I might have a hot bath too - although as the heat triggers Uhthoff's phenomenon and quite often causes temporary loss of vision in my damaged eye, perhaps I won't.

Argh, the impossible balancing act of multiple sclerosis.

On reflection, perhaps I'll just wait it out wrapped in hay lying prone in a cardboard box like a Blue Peter tortoise.
But with rather more gin and mince pies than our scaly televisual friends may have been allowed.

:: Cold hands (Warm heart) by Brendan Benson 

*I am actually hoping those children are having a lovely time in the snow. I did brave the garden with my daughter to build a small snowman. Then had to lie down under many blankets for a couple of hours, but it was snowtally (sorry) worth it.

I'm still standing

This week's blog has been written by my brilliant daughter. 

She's nine and is the most thoughtful and caring person I know – I learn something from her every day:

When I'm at home I forget that mummy has MS, I always do baking with her and we have made some amazing cakes.

This year has been good and bad - mummy had a eye patch for the start of the year but now she is on tablets to try and stop her having relapses.

She can play with me a lot more and she doesn't get as many headaches.

We can go the park and also decorate the Christmas tree together.

Last Friday, mummy was helping set up at the Christmas fair at my school and I was at guitar, when I came out of guitar she came and gave me a hug and a kiss.

The reason why I chose this song is because I have always known mummy when she has had MS. She has had a few relapses and I have been with her.

So it means that I am still standing even though she has had relapses.
I know we will be ok even though it is sad to see her ill.

:: I'm still standing by Elton John

Tumbling down

One of the common issues with MS is dreadful balance. Another is struggling with the impact of the cold.

Totally logical then, for the woman at the centre of one of the first documented case of the disease to also be the patron saint of ice-skaters.

Bizarre, but true. Here’s the short version of the story*:

Saint Lidwina of Schiedam was born in Holland in 1380. At fifteen, in a severe winter Lidwina was skating with friends when she fell and broke a rib and was put to bed in her family home.

She never fully recovered and became progressively more disabled and ill throughout her life. It is believed that she became paralyzed with the exception of her head and left hand.

Until her death at 53, she suffered intermittent pain, weakness of the legs and vision loss - although with some apparent periods of remission. A pattern indicating symptoms typical of MS.

After her death, she was canonised with the slightly unusual double whammy of patron saint of ice skaters and the chronically ill.

I’m sure there are some important things to draw from Lidwina’s story – by all accounts she continued to live her damaged life with grace, acceptance and thoughtfulness.

I’m also pretty grateful that I don’t live in a time without MRIs, neurologists and drugs.

But mainly I’m going to be very careful when considering any ice-skating invitations.

:: Tumbling down by Midge Ure 

*Read the longer one here.

Mathematics

As previously discussed, me and maths - we're not great together.
However, the one aspect of the m-word that I do wholeheartedly admire is that of the Venn diagram.
This little logistics lovely has huge creative possibilities and it's made me smile to have a go at creating my own.
And so, with apologies to John Venn for tweaking his idea for my own purposes, here is my Venn of MS:

:: Mathematics by Cherry Ghost

Possessed

So, this is unusual.

I've had a real run of energy and optimism over the past few weeks and have been able to function reasonably well at both work and home.

It's a bit odd. I'm pretty sure it's not caffeine-fulled (although with the amount of buckets of tea I get through in a day it should be) nor is it because I've suddenly cracked the puzzle of how to get that magical, elusive, sleep that actually refreshes rather than the usual type that doesn't particularly make a difference.

I don't know the reason and I almost feel I shouldn't analyse it too much incase I spoil it.

Quite a lot of my years with MS have involved tracking and tracing and questioning and planning. Calculating the balance, looking for answers and chasing the theories.

Quite a lot of my years pre-MS involved the same, just for different reasons.
It's become second nature, I think it's just part of who I am.

But this time, I'm trying really hard to purely accept and enjoy and appreciate.

It's honestly not easy for me, but just for the moment, I'm trying to shut my racing brain up and simply be grateful.

:: Possessed by Vegas

Yoshimi battles the pink robots

I’m beginning to feel slightly victimised by technology.

Not the usual wifi blackspots, refusal of the computer to talk to the printer when it’s sitting RIGHT THERE or the losing of my mobile in wet and unpleasant places.*

But a personal, inbox invading victimisation.
I shall expand:

Part of my job is to write content for our organisation’s website and we’re just introducing a new system to help us organise the site behind the scenes – planning the content, images, blogs, films, campaigns, social media and links.

So far, so good.

But as part of the new regime, I also get emails from the system which are meant to help and encourage the planning work.

The last three emails have had subject lines that could only have been written with the intention of filling the recipient with confidence and courage for the working day ahead.

No word of a lie they have been:

• Your brain isn’t always right
• How to manage the chaos
• Your brain is lazy

Given that my brain isn’t right, is frequently in chaos and could feasibly be viewed as lazy, I felt unfairly targeted by this unprompted electronic judgement.

However, when I actually read the things, they give some quite helpful tips about inbox management, communication and structuring the working day.

But the most interesting of their tips were those that could also be applied to a life with MS and they are:

• More rush = more fuss
• Stop saying yes
• Get out of your own head

I think the first two tips are fairly self-explanatory. I don’t always follow them, but I really should.

The third one is more complicated and despite the theme of last week’s entry, doesn’t refer to gin.

In the workplace, so the tip suggests, it’s about getting your goals out of your muddled head and down on paper so you can work towards them with some sort of clarity.

In the personal space I think it’s probably pretty much the same.

The only snag being that I find any kind of forward planning difficult with MS due to the sheer ruddy unpredictability of it.

Going away next year? Unknown. Coming out at the weekend? Unknown. Working tomorrow? Unknown. Watching the TV tonight? Unknown.

But I think the overall premise is pretty sound, so I’m going to give it a go, starting with the smaller, more immediate targets.

Goal one: find the paper. Goal two: find the pens. Goal three: remember what on earth it is that I wanted to do with all this pretty stationery. 

:: Yoshimi battles the pink robots by The flaming lips

*I’ve dropped two phones down two toilets in my time. I am a techno-idiot who doesn’t learn from her mistakes. I managed to salvage one by bunging it immediately in rice and praying to the god of communication (Hermes, not Vodaphone.)

The rice worked, but – top tip here - the helpful man in our local phone shop tells me the most effective wet phone saver is cat litter. I know, remarkable.

Gin soaked boy

Auuuuugh.

It's November. Again.

I am dealing with the deeply unpleasant but sadly inevitable turning of the calendar by referring to last year's coping-with-November-list and adding a new mechanism.

So coming in at number 11, and despite what Hogarth thinks, it's gin. Lovely gin.

:: Gin soaked boy by The Divine Comedy