Sunday, April 28, 2013

50 shades of shyte. 

It would seem that there is too much rubble and crap for me to clear at present, so the gift is staying buried. 

I live in a house that does not work for me, which means that sometimes I can't get downstairs, let alone out into the world, amongst the living. 

It does not need to be this way, but the powers that be have decided they can't/won't help me. So this way it is. And I find myself in a world that is horrible. Horrible, stunted, restricted and so very limited, all because of this monster, that has taken up residence in my brain and spinal column. And very happy it seems to be, although I wish it would stop roaming at random, creating havoc. But still, at least one of us appears to be happy in our home. My home is like a prison. 

Please would someone help me clear the crap and rubble? 

Saturday, April 27, 2013

I have lost many things because of MS, but I have also gained.

I gained the courage, eventually, to quietly say to myself, 'No more.'

Because of MS, I met my husband.

Because of MS, I have time. And I get to spend it with the people that count. I'm getting better at telling who those people are. Drains or radiators. Remember?

Because of MS, I'm learning to say no. Not always easy, but easier.

Because of MS, I had the freedom to choose to have a baby. And because of the time I can give him, he's happy, interested and sociable. A bonus to complete our family, who's happily playing with a mini bread board next to me right now.

Because of MS I appreciate the little things.
Me, "Thank you so much for cleaning the bathroom/bringing the bins in/hanging the washing out/sorting out the bio hazard that is your room/etc"
Teenager, "S'alright. God, don't cry about it!"
Although that said, this is still a work in process...
The Good Man, 'Did you just walk down the stairs, navigating the bin at the top? Bring it down with you next time please, instead of stepping over it/round it, and empty it.'
Teenager, 'Ugh. I didn't see it.'

So anyway, let us not forget, MS is an unreasonable, life stealing arsehole, that is hard to live with. I have to get on and live, despite it. BUT you've got to look for the gift amongst all that, despite how buried that gift may be. It will be there. Clear the rubble and crap from your life, and there it will be. Seek, and you will find.
And I guess this is a trick we'd all best learn. Sometimes in life, MS or not, things go wrong, and sometimes in a spectacular stylee. But I think it mostly works out ok. If you just let it.

And that's something I have to remind myself of.

Tuesday, April 23, 2013

Disappointed. I feel disappointed. And cheated.

My life was not meant to be like this.

Generally, we have a vision of how we'd like things to go, and what we have to do to make these plans and dreams happen. We learn quite early on, that nothing is set in stone, and that changes may happen.

I hoped I would be a midwife.

I hoped I would have the strength to leave The Bad Man.

But I never thought to hope for the everlasting ability to walk independently.

Check, check, FAIL.

And this is what pains me. I can cope with the wide range of delights that MS delivers. Pain. Fatigue. Numbness. Intermittent losing of fine motor skills..........A challenge for you dear reader, so you get what I mean........try doing up you bra/top/jeans/laces or writing whilst wearing oven gloves.
I can cope with all that. There are ways, and adjustments I can make to make these things do-able.

But not walking independently? THAT I can't handle.

Last time I talked about what I miss. Well here's another.

I miss walking with The Good Man whilst holding his hand.

Thursday, April 18, 2013

Today I was sat on my sofa, right where the sun was streaming in through the window. Beautiful. But sadness came in the form of unhelpful thoughts. I want to take my son out and walk around the village, or even round to my friends houses. I have four that live within a 5 minute stroll. The village shop, also 5 minutes away, is opening again. How lush to go and get an ice cream and sit on the village green, with a tell tale chocolate smile. Or even just to go in to our garden. Christ! I know how to live don't I?

Yes, actually, I believe I do. Living life is best done by appreciating the simple things. Aware of it or not, most of us have a mantra. Mine is 'Take care of the everyday glue.' By this I mean, it's the little things that count, and they soon add up to a big hill of beans. And I could live on those beans. Fortifying, full of goodness and filling, aren't they?

So now I find myself really missing those little things. I want for those little things to be in my everyday. I want to walk around the house holding my boy, and go up and down the stairs with him. I want to share the wonders of where we live with him. And I realise, painfully, what I took for granted before MS. The girls wanting to go to the village shop with 10p after school AGAIN. The youngest being chased by a chicken across the village green, after another 10p shopping spree, and me, laughing too hard to be a helpful rescuer.

So I try not to waste my time, craving what I can't have. I'm lucky, and I know it, but the human condition encourages us to always want more. So here is my battle.
Don't crave what is out of reach versus craving what is out of reach. How do I live with that? How do I live with MS? How do I live with the gaping holes, caused by MS stealing from me?

The everyday glue has a tough job. It's holding me together, even when I feel I'm falling apart. I notice what is missing and I am very much aware of the simple things to be enjoyed. The simple things are what I took for granted. The simple things are what I crave. It's a never ending battle.
And one I can't lose.

Friday, April 12, 2013

Recently I was asked why my blog was called 'Balancing on the edge.' I explained why, and how it covers a multitude of sins and desires. And so I thought I'd best share it here too.
Since becoming an adult I have balanced motherhood, working, learning, friendships, know the usual stuff of life.

Well, since MS rudely entered the equation, I feel I've been on the edge of all that. My grip on it all feels decidedly loose.

The usual stuff of life I learned to balance, sometimes more successfully than others. But always feeling like I could learn and develop as I bumbled along. But now, no matter what I do, MS pops up to remind me who is really in charge now. And it's not me. And the irony that my balance is now non existent, is not lost on me either.

I have changed my diet, done exercise like you wouldn't believe, taken supplements, regular yoga and relaxation. And I have still played host to the most unreasonable, destructive, disrespectful house guest EVER.....aka, MS. Now I am on very strong form of medication for MS. And I hope beyond hope that it kicks some manners into the little shyte.

This is where the edge comes in. I can't work, and feel my friendships have suffered. As for's a double edged sword. I don't get bothered by the stuff that I now recognise as inconsequential. And as a result, I have a boy who smiles A LOT! But I don't feel able to be a proper, helpful, joining in, hands on mother. And that makes me very sad. At times, I have felt on the edge of my own life. And society. And sometimes I just want to jump off the edge. I am seen as different now, and that results in me being pushed to the edge of involvement with the everyday. The world is not an inclusive one.

So my world has shrunk, and this makes me protective of how I spend my time, and who I spend it with. Time is precious. A friend cleverly described people as 'drains or radiators.' If you drain me.....adios........if you radiate.......I'll love you forever. And a keeper you will be.

Without MS though, I doubt I would have met my husband, and had the ever smiling boy as a result. I would not have learnt how to say no, despite the lessons the universe sent me, and that I refused to learn. I have a greater appreciation of the little things and time and radiator people. And I feel more patient. Something that I'm sure my family would disagree with.

Well, you can't win them all....

Wednesday, April 10, 2013

People surprise me. In ways that are both bad, more about that later, and good.

By good, I mean out of this world.......listen to this. In the last few weeks, fund raising has been the name of the game. My girls have led the way on this. And people have been making themselves known. And this is because they recognise the situation we find ourselves in, because they have been in similar, and understanding how hard it is, they wish to help. Or just because they can help, in ways practical, and this is sometimes in ways we can't help ourselves. Offers of help have been coming out of the woodwork, and sometimes from people I don't even know, and I can't thank them enough. Really. I really can't thank them enough. And hopefully, because of their generosity and kindness, I may get a bit of my life back. I am very much aware that I'm on my own with MS, and what it's doing to me, but I no longer feel alone.

And that is priceless.

Tuesday, April 9, 2013

In my last post I said George Osborne had said he could live on £53 per week. I should have credited Ian Duncan Smith with that gem.

Saturday, April 6, 2013

George Osborne......word of advice......DO NOT enter a popularity contest. You won't fair well. The reason for this is three fold,

1, Saying that you could live on £53 a week. And yet making no move to prove it. Ideally, and realistically, this would need to be for more than a week. Anyone can wing it or go without for a week. It all changes when paying your rent/mortgage, bills, buying food, looking after, and providing for children, and just LIVING comes into play. I, and many others would dearly love to see you try. And whilst maintaining a sense of self respect and worth at all times, even though you can't afford to get your suit dry cleaned for an interview. Nappies or milk.....I would LOVE to see you faced with THAT choice. Where's your sense of self worth now?

2, Being photographed parked in a disabled bay. Do you have a blue badge George? No? Thought not. Apparently, he does not condone this, according to a source, and stated in the Guardian. BUT YOU STILL DID IT/ALLOWED IT, DIDN'T YOU GEORGE?

3, Using the deaths of the Philpot children, and using it to highlight the need for a welfare reform. Rich, or on benefits, Philpot would be a controlling, manipulative dangerous man. I would say, that's not a man to use as a basis for ANYTHING.

All this from the man who wants to make things fairer. Fairer is good George. But you are not the person for that job. AND incidentally, you would not be able to afford the Land Rover cited in 2, whilst you were on the benefits of 1. Shanks's pony for you George. At least you would be the only person offended by that.

George, you are clueless, and out of touch and lack common sense. Ever thought of being a politician??

Wednesday, April 3, 2013

Something has been bought to my attention through experience, and through listening to people and observing. Generally, people don't know how to behave when they realise you fall under the 'disabled' umbrella. So I thought I'd share this, in the interest of making life better for everyone. And so easily too.

I was once struggling to get myself up a slope in my wheelchair. So a man grabbed the back of my chair, and pushed me. That doesn't sound too bad. Or does it? I had no awareness of the man, until he started pushing me, because he was behind me, and he pushed me where HE thought I wanted to go, he 'parked me up' and thought he'd been helpful. I'm sad to say, I found myself saying 'Thank you'. Idiot. Me, that is.

People don't want to cause offence, so they do nothing. Or assuming that they are 'helping', they end up doing the wrong thing. Or they may be frightened of not understanding you, or of you not understanding them, so they just ignore you. And, of course, they could just be rude.  I have been on the receiving end of it all.

I don't have an an electric wheelchair, preferring to propel myself. This gives me good shoulders, and banishes bingo wings, but it's knackering. So anyway, I was finding it difficult to get up a slope and into some electric doors, which are my idea of heaven on wheelchair days. A lady saw me, and said, 'Do you need any help?' I could have kissed her. Not because she offered help, but because she asked.
So, that's how everyone can benefit. ASK. It really is that easy. If you see someone, anyone, and for whatever reason, struggling, ask, 'Do you need any help?' You'll feel good because you offered. The other person will feel good because you asked. Everyone's a winner.

It really is that simple.

Tuesday, April 2, 2013

Today I realised that I am worried. Very worried. I realised this as I read a blog by Andrew Collins, in response to a Guardian article about tax and welfare cuts. It was titled 'Fool Britannia'. Personally, I would have called it Cruel Britannia. And sadly, I feel that this is something, through personal experience, that I am fit to comment upon. I agree with Andrew Collins, and I have personal experiences to add too.
I have heard Cameron say as recently as last week that the hard working will be rewarded. And so you would hope they would be. However, what if you were hard working, and now through no fault of your own, you find you are not able to work at all? What then? Because benefits are being cut and they weren't that great to start with. Cruel Britannia indeed, and it's about to hit us all square in the face.
What makes a country Great, is the way it treats and respects it's elderly, disabled and vulnerable. Well, I'm more than sad to say we live in britain. That's right. No great. And with a little b. And this effects us all. Because, during your life, you will become one or the other.

In 2007 I was training to be a midwife, which I adored. I was single, and getting divorced from a Bad Man, raising four girls, going to the gym and having a very busy social life. And not to mention running a home. Life was full, and I was living it, right into it's corners.

In May 2008 I was diagnosed with Multiple Sclerosis. And HALT.
Life as I knew it turned upside down. And I found myself in a world where you have to fight for the things that you do not want, but need. My wheelchair for example. Apparently, I couldn't have it because I couldn't use it in my house. Sorry for living in a too small house. An interesting way to penalise people. At home I get around by leaning on walls, door frames and furniture. What if I need to go out? What then?
You find you no longer have a voice, and that other people 'know best' They never do,and never will, especially if they see fit to not include you in your own care and own choices. So anyway, I won the wheelchair war, but I don't consider that a victory. I cried when I took that delivery. And not with happiness.

I also need a downstairs bedroom and bathroom, and the access sorting. 5 steps into my home is not compatible with wheelchair days/weeks/months. Then I'm housebound. And I'm in the longest. bloodiest fight ever over all that. And yes, like I said, I have been divorced.
It also emerged that I have rapidly evolving MS, which is why I now, not even 5 years after diagnosis, and for the last year, I find myself on two crutches or in a wheelchair when I go out. Which is a rare occurrence. As a country we have not evolved beyond adding more disabled parking spaces. The shops are still unwelcoming on the whole. And as for some of the people that work in them, well,they would appear to hold the belief that if you can't walk, you can't talk. "Does she have sugar in her tea?" This question aimed at your bipedal companion.
Laughable isn't it? Well, not from where I'm sitting. Welcome to britain.