Tuesday, June 25, 2013

I started my day yesterday with an hour long MRI. I have decided there are better ways to kick off the week. I don't mind them, but plenty of other people don't like them at all. And I can see why. MRI's are a cold, noisy tiny tunnel. The noise is best explained as machine gun fire, with the occasional seize fire for daleks to have a chat and a game of the 80's electronic toy, Simple Simon. All this whilst someone pops open a jar of coffee by repeatedly bursting the paper seal with their finger.

It's not very often that I have a whole hour to myself of uninterrupted(ish) thoughts, and I couldn't help but think about the images the radiologist would be seeing. Me, in slices. The whole of my spinal column and brain, separated into sections, as they search for scarring and inflammation. These should correlate with, and answer why I have the symptoms I do. Clever init?

And a far cry from the diagnostic techniques from yesteryear. A way of diagnosing MS was to put people in a hot bath and watch as they wilt. This is due to Uhthoff's syndrome, where the slightest raise in the core body temperate can result in the temporary exacerbation of symptoms.

It's amazing how so much has developed in understanding this disease, and the development of the drugs, and the MRI, but there is still a long way to go. In the 70's it was thought there would be a cure within 10 years. 40 odd years later, and we're still waiting. Will it be in my lifetime? I don't know.......there's still a long way to go. But I'm not going anywhere. So I'll be just here, impatiently waiting.

Thursday, June 20, 2013

Time to make a change.

So then, we have all been privy to the news surrounding Nigella Lawson. Saatchi, to make his point clear, grabbed her throat. I feel this topic is too big for me to do it justice, so I'll just state some facts from women's aid and the BBC....

1, 1 in 4 women will be the victim of domestic abuse in their lifetime.

2, 1 incidence of domestic violence is reported to the police every minute.

3, On average, 2 women a week are killed by their former or current male partner.

Recently, 2 miles away from where I live, a woman was stabbed to death by her husband. She escaped out of the kitchen window, and banged on a neighbours door for help. She died from her wounds, and left 2 children of that marriage. That neighbour is a school friend of my daughter. The blood on his path and police tape remained for some time. The memory of that horror will last forever. And the children are starting a new life in a new country without either parent. Heartbreaking.

You are more likely to suffer domestic abuse if,

1, You are separated couple,

2, You are unemployed,

3, The lower your income, the higher your risk,

4, Those with a long standing illness or disability are also at greater risk.

I would recommend a book called, 'Living with the Dominator,' to all to gain an understanding of this complex, heartbreaking and poorly understood and rarely discussed 'situation'. The responsibility for making a change, lies with all of us. Starting with how we raise our children, what we expose them to, what we teach them is, and isn't acceptable, and how they treat others and how they can expect to be treated in return.

This affects us all.

Monday, June 10, 2013

I really thought I'd make my mark on the world. Not in a grand way. Just in a way that says, 'hello....I'm here.' By doing my job well, by being a good friend, by being a good mother, by being present and interested.

Unfortunately, the only mark I'm making is with my arse on the sofa.

And it really makes me feel left behind. The world really can get on just fine without me. Can you believe it? I can't.

I see other people getting on, going to work or the shops, going on holiday, going on picnics with their kids, y'know, just living, and I don't feel like I am living. I feel like I'm waiting. What for? Fuck knows. But there must be SOMETHING?

So feeling a bit grrrrr, I booked a tramper and had a ride around the countryside, in the best company, and it was lush. And I booked the good man to take me and the little man swimming....also lush. Wet poolside + crutches = interesting. And I'm due to start sailing soon. MMMmmmm kagool....not so lush. So I can get on and do, but I ALWAYS need other people. And that's restricting because other people have lives and jobs and aren't on hand 24/7, at your disposal, whim or fancy.

I miss my job SOOO badly. I miss my friends, and being a friend. I miss being the mother that isn't restricted physically. I miss independence and just being able to do things on my own.

It's hard to feel present when you feel absent. And it's hard to feel interested when you feel so far removed from interesting.

I really just don't know what to do, or how to be with this. How can I learn to be ok with being less?

Tuesday, June 4, 2013


And goodness me if they aren't sleek, comfortable to hold, and comfortable to walk with! And.....

PLAIN BLACK!! with a sheen! Needless to say.....I'm chuffed to bits. And I know they'll be great when I'm out and about and, importantly, they'll go with whatever I'm wearing. Clashing? Not anymore, thanks! They are the perfect spacka accessory.

Accessories when you are disabled are generally ugly. It's as though all the design effort is used up and there are only the dog ends left by the time it gets to us. And, I have been told, by a 'caring' professional 'it's not about what you want, it's about what you need.' Are they mutually exclusive when you're disabled? And I do know I NEED adaptions, but can't I have a choice and a say in what they are? Able bodied people do. Seriously, would you let anyone in to paint without even choosing the colour?

I DID NOT have a say in getting multiple sclerosis, and this makes me even more determined to have a say about what I need. I am best placed to know that need. And this takes me back to the crutches. They're crutches, and there's no changing that, but it was possible to change the design to a way that suited your personal taste. Colour or pattern - you could choose ANYTHING! Because at the end of the day, we are all individuals. And this should be welcomed, catered for and celebrated, whether you're able bodied, or less abled.

And so my crutches mean I can walk, and keep me steady, but they are also remind me that I do have a say and they remind me that I am an individual. Plain black would not be everybody's choice, but it is MY choice. And I am happy with that.