Friday, May 31, 2013

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.)


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.

Monday, May 20, 2013

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.

Friday, May 17, 2013

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 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 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.

Thursday, May 9, 2013

Yesterday I was in a bit of a fix. I was getting wound up at the way things are, and the way I'm doing what I can, and how it seems to no avail. I'm not getting anywhere. Helpless? Absolutely. We all know I have ms, and this brings it's own problems. And it is more than crap. What is really crap though, is that some of the problems I have, have been magnified by other people behaving so badly, and it's beyond comprehension.  However, what I must not do is get stressed about it all. MS and stress are not happy bedfellows, so it's best to keep them separated.

So realising I was a bit knarked to say the least, I rang a friend. Lucky lady. This friend tells you how it is. And packs a punch with the softest delivery. The most effective way to serve up the truth. Acknowledging that these things are unforgivable and tough to live with is enough. And move on. And that is what I'm trying to do. Big shits cast a long shadow. But you can't get shadows without the sun. And thankfully, I have that in spades too.

I plan to use those spades to shovel the shit away.

Friday, May 3, 2013


Right, so confession time, just in case you missed the painfully obvious. I'm up and down. I'm angry at the loss that this monster has caused. I am grateful for the gifts
it has given me. I hate what it has done to me, but I love the lessons that I have learned. Crazy roller coaster and I want to get off. NO! WAIT! I want to go higher! I want to go faster! Ugh! I hate this. Can we just sit a while and enjoy the peace?

So, today I am giving thanks. I started the day with a phone call from a solicitor, offering help. THANK YOU! Two weeks until another fund raising event. That someone else has organised. Just because they can, and sadly because they understand. THANK YOU!

And then the post lady came. And she waited patiently for me, as she always does, to get to the front door. THANK YOU! A parcel containing prom shoes for my daughter, to go with the dress she has made, and it's beautiful. Clever girl. Bills. Flyers. A parcel for me.

I open my parcel to find a book called 'The tent, the bucket, and me.' by Emma Kennedy. I read the first page, and laugh out loud. Twice. The parcel also contains a home made cd. Complete with a home made book. This book contained the hand written lyrics of the songs, all of which had a bird theme. Birds, and what they symbolise, have a place in my heart that cannot be rivalled. This handmade book also contained bird facts, for example,

'When birds sing, their brains develop new neurones. Researchers hope that by learning how this happens, it can be applied to the human brain and used to treat degenerative brain diseases.'

I am typing as I listen to the cd. And it's perfect. And you, dear Dawny, struggle to be practical. And you are not perfect. But you are practically perfect and I would not change you. You are kind and thoughtful, even when life hasn't been kind or thoughtful to you. Don't ever change.

This post is dedicated to you in rock star stylee.

My bird tattoo, when it was first done, for my girls and me, back when that's all that was.