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.

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.

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?

MY CRUTCHES HAVE ARRIVED!!

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.

choices choices.

I remember, back in the day, agonising over the choices faced when shopping. Shoes, jeans, tops, bags. I was restricted, like most of us are, by price.

But now I find myself trawling the internet for the perfect crutches. They are elusive. Or so I thought, when I was faced with an incredible array of colours, sparkles and bloody butterflies. I mean there's no disguising them, they are never going to fade into the background, but I do not wish for mine to scream out loud either. Some people want theirs to be pretty, and there's plenty of choice out there, if this is your ideal. If, however, you want yours plain, you may run into problems. The vast array was making my eyes bleed.

There's so much to consider. Soft grip handles? Adjustable? Open cuff or closed? Diamante trim ( I'm not kidding.)

I JUST WANT BLACK! PLAIN BLACK!

After much searching......Taa Daa! I found a pair! Black! ADJUSTABLE CUFFS!......They can be closed OR open! Soft grip handles that are REMOVEABLE and WASHABLE! The height is adjustable, as is the distant between the hand and the elbow. I feel like I've died and gone to spacka heaven. They aren't cheap sadly, it's costly to be disabled, but they will make my everyday a little bit easier. No more blisters, callouses, backache, or  crutches falling to the floor.

And they match my leather jacket and satchel. Happy ish days are here again.

Yesterday I was watching the RHS Chelsea Flower Show. It's always impressive to see the passion, commitment and patience of the gardeners competing, and to see what they produce, and the thinking behind their designs.

But it was the interview with gardener Chris Beardshaw that knocked me sideways. He had been diagnosed with Arthritis as a teenager. He had designed a garden to reflect the several aspects of going through diagnosis, and how it impacts upon your life, and life choices, and I drew parallels with him as he talked.

The first garden was the Veiled Garden. And he talks of the boundaries he faced, and optimism disappearing and not being able to fully engage.

The next garden was the Lucid Garden. This was about realising you are not alone. There's light, consistency and the veil and fog lifting, and new optimism.

The last garden, The Radiant Garden is about bringing joy and a new, positive new lease of life back into the everyday.

He has gone through all those gardens on his journey with Arthritis. And there are similarities for anyone with any long term, debilitating illness to be drawn from listening to him speak. I flick back and forth between the Veiled and Lucid Gardens. But now, I have hope, that one day I may find myself in the Radiant Garden. Until then, I plan to get outside and weed and grow and enjoy. And I hope that this gets reflected in my days. I've already cleared the weeds from my life......good start! And now to nurture and enjoy, with optimism.

There's no time like the present, so I best get cracking.

False economies.

False economies. I kid you not, they aren't worth it. Bin bags, loo roll, cling film. And the list goes on. I had a hospital appointment today and got home to an overflowing bin. I go to change it, and my fingers end up in the rubbish as the bag split it's skin, unable to cope with the pressure from the unwanted, damp, greasy remains.

Cheap loo rolls......you really don't want your finger to burst through that!

Anyway back to the beginning.....

I've just changed hospital for all things MS. The last consultant I saw at my old hospital, talked to my husband, and not me, despite the fact that I was there. Right there. 'I'm your patient! You should be asking me your questions! I can answer them!' So that was what I was thinking. I was also thinking 'cheers bud, you've just made up my mind that I must move hospitals.'
My first idea to do this came as another consultant asked another patient loudly, in a room full of other patients, 'How is your urinary incontinence?' Christ on a bike mate......did you miss the common sense and sensitivity module? I could happily get paid a lot of money to be an insensitive twat.

So the new hospital....is light and bright, as were all the people I saw. Straight forward common sense in shed loads too. They could see I needed help, and they offered it. Explanations and decisions were plentiful. And they were made quickly too. And this resulted in me feeling like I was in partnership. And WE were going to do the best we can.

It's a false economy to spend your time on people who are not going to help you be the best you can be. Doctors, partners, friends, and we are full circle back to the drains or radiators again.

I'm back with the radiators, and I can't tell you how good that feels.