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? 

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.

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.

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.

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, relationships....you 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 motherhood....it'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....

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.

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.