Friday, August 30, 2013

This week has been interesting. Personally, historically, globally and nationally.

First off, personally, my boy turned 1, and this led me to indulge in some personal reflection.

Historically, it was also the 50 year anniversary of Martin Luther King's "I have a dream" speech. Reflection here was also integral to the speech. What is the point of reflection if it's not to better your understanding? What's the point if you don't act on those lessons learnt? Dr King had clear vision of where he could see us going, and it was to the benefit of a nation, and not individuals within that nation. He had a point, he made it well, and sadly, for the most part, we missed that point. And this missing the point, has impacted globally. It's simple......treat others as you expect to be treated yourself.

And nationally, there was the incident where special needs kids on a trip with a performing arts school, were forced to sit on the floor of a train by the toilets, to 'spare' the other passengers from 'seeing the likes of them.' Just writing that makes me take a deep breath. And it makes me wonder, 'Just how far have we come from that speech of '63?' I know that speech was talking of the hope, and need, for racial equality. To me it transfers to ALL equality. It really is to everyone's benefit if we live with equality.

As it stands, at the moment, a person's race, a person's financial status, a person's physical ability or disability, even looks, seems to be a notable point worth mentioning. All men are created equal, after all. Are they really? Errr, no. Initially, yes, until the point of birth. And then humans create and maintain a divide, sectioning people, and putting them in boxes.

The only thing we really need to be concerned with is our level of kindness, honesty and fairness.

Having MS, I can honestly say that fairness and kindness is missing from the disabled box I find myself shoved into. I did not willing get in that box, but I am willingly getting out. I too have a dream, and it is that all of us act with kindness, fairness and honesty. And to treat others as we wish to be treated ourselves. To be any other way is to shit on your own doorstep, and that's just stupid.

Tuesday, August 27, 2013

My beautiful boy turns 1 this week, and this in turn has caused me to look back over the past year. It's been a mixed year of extreme opposites. On the one hand I have a boy that is always happy and smiling, and this reassures me, that despite my limited capabilities, I am doing something right. My girls have developed into people that are capable of making their own decisions, as they forge their way in the world. I have met some incredible people due to having MS. Like right now, my husband is out at football practice with twenty-one other volunteers , training for the celebrity game to raise money towards the downstairs bedroom and bathroom that I need. They are giving up their time and raising money for me........THANK YOU!

On the other hand, since early pregnancy, I have gone downhill physically and I have lost so much independence it's unreal, and this impacts upon my ability to be me. The real me. The busy, gyming, swimming, working, socialising, driving, walking, me. The me that I am now is still me, but I am a shadow of who I was. 

So anyway, to celebrate the day our boy began to make his three day exit, the good man planned a picnic, and so off we went..... 

This view is my doorstep. And it makes you feel good just sitting there, enjoying the view with the ones you love, having a picnic, and feeling the sun on your face. Sitting on a blanket in the great outdoors, I felt less of a spaz, and that's always a good and welcomed feeling. Especially as I'd just got over optic neuritis. This is an inflammation of the optic nerve, and it disturbs your vision, and made me feel sick with the pain and made me want stab myself in the eye with a screwdriver. 

So it was a fantastic thing to just sit and actually see that view.

You win some, you lose some, but me, my picnic blanket, the good man, our boy, the girls and their strides towards adulthood, and my eyesight are definitely winning.

Wednesday, August 14, 2013

Check me out with my new accessory....disgusting, isn't it? Why oh why the bright red strap? Why oh why is the piece of hard plastic up the back of my calf the colour of the nearly dead.....a sort of beige grey insipid blurgh. But it makes we walk a little better. It's another you win some, you lose some situation. At the moment the weather is quite nice. The weather that calls for cut offs, dresses and skirts. This ankle orthosis calls for trousers. And rather ridiculously its called a Dynamic Ankle Orthosis. I feel anything but dynamic with it on. I feel like a proper spaz. Especially when I team it with the crutches or wheelchair.

Don't get me wrong.... despite my dislike for the Dynamic Ankle Orthosis, it's fantastic when people that can help, do. And do it whilst treating you like a real person. It does aid my walking, and for this I am grateful. My dislike is purely and wholeheartedly because I need this at all. And because it's not plain black all over.

Thursday, August 8, 2013

Yesterday was a good day, and what made it a good day were the people that filled it. It was a day of appointments and they were all with people that are helpful, that look for the possibilities rather than the problems, and they make those possibilities happen. But the gold star goes to the local fund raiser who came to see me to discuss him putting on a charity football match with TOWIE people to help raise funds for the adaptions I need. He has done this several times before for those in need of support. He was calmly discussing what we needed to do.....and meanwhile inside my head, it was going a bit crazy.....'Really? You'd really do that for me? Eeeeeeeeeeeeee!'

There was one fly in the ointment of yesterday though. My cd player died. Today I have realised in old lady stylee that this is ok, as all my music is on my laptop and phone, but yesterday it was the end of the WORLD!  Which is a bit of a daft reaction from me....I was, without doubt, the worst member on the music pub quiz team. So it's fair to say I don't live and breathe music, however, I would not want to live in a world without it. Sometimes a song really resonates and hits home, or reminds you of a time or person, or sometimes it just makes you smile LOADS and puts a little bounce in your day. Or makes you say 'Ugh....what IS this?' (Remember...I do live with teenagers....)

So I thought, from time to time, my blog would be accompanied by music....and here is my first choice......


Sunday, August 4, 2013

The internet is a marvellous thing isn't? To think I can sit here and share my words and ideas internationally is just awesome. Unfortunately though, this is abused by some, that are doing the same as me. Just writing, from the safety of home, but targeting, and abusive. And cowardly.

I am openly sharing, in a bid to improve understanding. These people are anything but open, preferring to hide, believing that they are afforded some anonymity which allows them to behave in a way that they believe reaps no repercussions. Well, the masses have spoken out loud at their disgust, and changes will happen as a result.

Which is why I, and many others boycotted twitter on Sunday 4th August, in response to the abuse targeted at Mary Beard, Grace Dent, Catherine Meyer, Stella Creasy and Caroline Critado Perez. The abuse came in the form of bomb threats, murder and rape. These women were also told to develop a thicker skin when they complained. Really?

I think the people issuing these threats should be taught a thing or too about general good manners, for starters. And they could really benefit from having someone point out, that should the opportunity present itself, and you were to find yourself face to face with these women, would you really be so bold as to issue these threats? Or carry them out? Probably not.

And this is the thing with the internet. It allows you to find anything out, share your thoughts, and keep in contact. It also allows nastiness to spread, and for those spreading that nastiness to hide.

Incidentally, August 4th is Friendship Day.

My nan always said, if you haven't got anything nice to say, don't say anything. She was a smart little Welsh lady, and she would have taught these disgusting people a thing or two about manners. Hopefully they'll be caught, sentenced and the people of prison will teach them a thing or too. Be careful what you wish for, because it might just come back and bite you on the arse.

Friday, August 2, 2013

It's cooler! This brings me untold joy as ms does not like heat! Sun, yes, heat, no. A marriage made in hell. This is due to Uhthoff's syndrome, where a raise of 1/4 degree in core body temperature sees an exacerbation of your symptoms. And results in me being a limp mess. Like all my bones have dissolved. Beautiful. And I was panicking slightly that the IV steroids from last week hadn't done the job.

It wasn't always this way. Back in the day I would have been enjoying the sun, like most people do, with the odd 'oooohh it's hot init?' Icecreams, cool drinks and paddling pools, and every single towel you own in the garden, left there, grass stained and muddied, by yours and neighbouring children. Everything looks better in the sun. Even a big pile of dirty towels.

So as heat is no good for ms, is cold weather better? Errr, no. I find I have increased spasticity which sees me moving around like a peg doll. And pain steps up a gear too. Again, beautiful.

So these days where it's still sunny, but not too hot, and with a breeze that's fresh are my ideal. And so I plan to make hay while the sun tones it down a bit. I'm going out with wristband girl to get some birthday presents, whilst she gets in some driving practice. We may even take in a pub.....pop and crisps....WILD!

Which beats feeling like MS has made a goldilocks out of me...not too hot....not too cold. So I'm going to make the most of it, while it's just right.