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

True colours

It’s October half-term so that can only mean one thing – it’s our annual return to Butlin’s, hurrah.

Another chance to meet and greet with Billy Bear, another chance to eat massive breakfasts (Tec actually medically demands the fat content of a full English everyday*) and another chance to brave the Space Bowl.

I’m aiming to embrace the insane whirling dervish of water with fresh confidence this year, emboldened by the following key facts:

a) I can feel the water again which is surely a help and
b) I shall be wearing a spectacular vintage style swimsuit – all 50s glamour and bright red cherries

It’s a rather lovely item of clothing, first debuted at our daughter’s birthday swimming party last month where hubby and I both got in the water to oversee 20 over-excited eight and nine-year-olds.

When I mentioned to other mums that I’d be going in, the main reaction was “oooh, that’s brave.” Not, interestingly, for the fact I was leaping into what was effectively chlorinated kid soup, but for the fact I was wearing a swimsuit in front of other school parents.

This aspect of the party honestly hadn’t occurred to me. Possibly because I was mainly worried about my daughter’s friends drowning/ injuring themselves or each other/vomiting in the pool.

But it made me think.

As previously noted I do not have the magazine idea of a perfect body. But more than that, thanks to MS, the idea of a genuinely perfect body – that is one that is perfect in health not looks - is a totally impossible dream.

I can diet it, I can pamper it and I can push it – but I cannot make it do what I want it to. I cannot repair it and I cannot make it better.

I certainly have sympathy with friends who are unhappy with their bodies, who want to lose weight or tone their thighs or increase or decrease their busts – but I’m also sad for them.

I’m sad that their insecurities are stopping them appreciating what a disease-free body is, what it means to be able to enjoy their health.

We are living in an age of insane scrutiny of woman’s bodies, of judgement and shame, of doubt and stigma, where the style has become worth more, much more, than the substance.

I really don’t want my daughter being exposed to this culture. I really don’t want my friends to feel belittled by it. I really don’t want a world where ‘brave’ means putting on a functional item of clothing.

As someone whose body is never, ever going to be perfect, I want my friends to feel proud of the beauty, strength and health they do have and not dwell on the perceived flaws that they don’t.

I want them to wear a bikini, a swimsuit, a tankini, a wetsuit and dive straight in.

And for those of us who, for whatever reason, are not blessed with a healthy body, well I like to reflect on this:

:: True colours by Cyndi Lauper

*This is not actually medically true. But for the purposes of Butlin’s enjoyment it is.

Love cats

The cats!

The cats are back!

And, more importantly, the cats are smiling.

The reason why the cats are smiling is blood related.

Admittedly slightly unpleasant on the surface as an explanation, but it’s actually all good. Or at least, it’s good as regards overcoming this particular hemoglobin hurdle.

In July I wrote about the maths of MS and more specifically the maths of Tecfidera.

The delicate balance of lowering lymphocytes to reduce the unwanted autoimmune system response tempered against a weakened immune system with its potential for unpleasant and opportunistic infections.

Back then, after six months of Tec, my lymphocyte levels stood at 0.74, having dropped through 0.77 at three months from a 1.2 starter reading.

My latest results show them back at 0.91 – a massive relief that they are picking up and hopefully heading away from the infection danger zone and Tec-stopping level of 0.5.

Of course there will be more three-monthly blood letting hurdles to go where the readings may have changed.

And even then, assuming those results are okay, there’s still the big leap of the MRI which will indicate whether all this maths, hair loss and cat-related internet searching is working for me.

Like the whole of MS, it’s an unknown.

As a disease modifier, Tecfidera’s efficacy is currently rated as good – with relapses dropping by an average of 53% and disability progression slowed down by 38% But note the ‘on average’ – my experience on Tec could be far better, or far worse, then these numbers.

Until the MRI, until the next relapse, I just won’t know. But just for the moment I’m feeling quite relieved and ready for:

 :: Love cats by The Cure