Monday, July 29, 2013

I finished my IV steroids on Friday and I'm happy to report improvements have been noted. Today, for the first time in 11 months, I gave my boy a bath. Normally, this has fallen to the good man to do, whilst I just watch. The perennial bystander of my own life. We both got a bit soaked, which made it all the more perfect.

On Saturday I went to a shop and enjoyed getting my boy some tee shirts. This was a new experience for me, and, it's fair to say, I loved it. I was on my crutches but it was all a bit easier, and I really enjoyed looking around, and choosing. It didn't break the bank.....£11 I think, but it was actually priceless.

When I got home, the family en masse did a little weeding. I had been finding it impossible to get in to the garden, so to get out, and weed, and enjoy the sun, and the garden was fantastic. And even better, it was shared by teenage girls, small people, the dog, and the good man. We are all still basking in the glory of a good job well done, as we peep out to enjoy our work.

On Sunday, the good man, the little man and I went out for a coke. Such a normal everyday event, that most people can do without even thinking. Well, believe me, I swear my smile made a 'kerching' sound.

I still get completely battered and knocked about by MS, but I'm bouncing back quicker. I don't worry so much about going out and about. So much so, I'm out with friends tomorrow. Another coke, and a catch up.

And life, as a result, has bit more ease and joy in it.

Friday, July 26, 2013

Today was my third day and last day of having IV steroids. They are amazing! It's the little things that count.....and these little things that I have noticed changes in, are little......but to me they mean so very much....

1, I had a shower today, without assistance, and without the board that goes across the bath to sit on....that's right people! I had a shower, all by my bad self, and standing up! I cannot remember the last time I did that, and it felt so good.

2, I was sat on the bed and I lent over and plugged my hair dryer in. No biggie you say? Normally, I struggle to even do this small task.

3, Whilst standing up, I feel more solid on my feet. I am still using the lush crutches or the wheelchair for distance, but it all just feels a tad easier,  y'know?

4, For the first time ever, I picked my speedy crawling boy up from the floor, and there are NO WORDS to describe how very good that felt. It's enough to say my eyes feel a little leaky writing about that triumph!

5, My friend took me yesterday, and so to repay her, I took her for lunch. And I did it without worrying about the access, or where the bloody loos were, and we just sat, chatted and enjoyed.

6, I had more friends call round last night.

7, All of these things add up to me feeling like a real person, and that is priceless.

Some of the not so good things.....

Horrible taste in my mouth, but hey, mints to hand and I can live with it.

Track marks up arm. Oh so very attractive, but I can style it out.

Being sent home with the most annoying accessory du jour.....

 wrapped up...

You win some you lose some, and on balance, I think I'm winning.

We are also winning on the sale of the wristbands. I am so proud that my girl had the idea....and they are beautiful. They are travelling well, on my behalf, getting to places and beaches that I am not, but I feel like a bit of me is there.

Friday, July 19, 2013

I've been writing 'Balancing on the edge' for three and a half months now, and as I hit nearly 6,000 page views, I thought I should take a moment to say hello, and thank you to all you readers. Blogger logs the country of origin for the page views, and you lot span the globe. Which I find amazing!

I started this blog as a way to air my frustrations at the way disabled people are treated. And as I've spent most of my life able bodied, I feel I can, sadly, draw the comparisons. And I have to say, on balance, being a spaz is beyond shyte. So, to be clear, I feel I could live with the monster that is Multiple Sclerosis, but what I find hard to live with, are the restrictions imposed upon you by an unthinking world, that makes you fight so hard for those things you don't want but NEED. It really flicks my switch.

So, back to giving of my girls came up with the idea of charity wristbands, to help with fundraising towards the disabled adaptions I need.

We worked together on them and she knew what she wanted them to say.....

'The good you do the good that shall return.'

I added a bird at the end of the text, and chose turquoise as the colour. We settled on the thinner width, and put our order in. When they arrived I was beyond happy! They look great, and as there is a reason behind each element we chose, they are personal too.  Can you imagine if I see someone I don't know wearing one? I think I'd be beyond happy!

So anyway, I digress....I'd like to say thank you again, to all of you who have read. Please feel free to share my words

Wednesday, July 17, 2013

Goodness me, this MS shizzle is really kicking my arse, and I was starting to feel like I must be making it up. 1 or 2 posts ago I wrote about the MRI I had, and I've just had the results back, and YEP...I'm relapsing. See? I told you I felt shyte! So, confirmation I'm not making it up v's Oh this is a bit's not really supposed to happen on my drug of choice.

My old hospital kept telling me..."You're ok." I didn't believe it and I certainly didn't feel it. Hard to when you're in a wheelchair or on crutches, and you don't trust everything is being done.....  Feeling there must be more, this was one of the reasons why I changed hospitals, and that's where I had the last MRI done. The results = THEM calling ME to get me in for IV steroids. This is not a dream scenario, however, it is a dream to have actions taken on your behalf, and to believe those actions are in your best interest.

I've only had the foul tasting steroid tablets before. ( I was actually sick on top of the table......that's how lush THEY are.....BEAUTIFUL!) But this time I'm having them intravenously. So I asked my MS buddies for comparison feedback.....and the IV rates quite high!

I might be unsleeping, hyperactive, hungry, and quite chatty.....but I also may feel so much better. But hey....I'll risk it for a biscuit....probably a whole packet actually.

Saturday, July 6, 2013

Ups and downs.

A few posts ago, I wrote of the parcel I received in the post from a friend. Well, this friend has only bloody well gone and written, and published a book! Impressive! I love her muchly!

I don't know what is going on in the all feels a bit unbalanced. On one hand, I have these stars satelliting my sofa based moon ;) as they do incredible things.....the book writing friend, the friend who's just landed a coverted job in Switzerland, the friends that are planning their world wide trip, the friend that just rode his bike for just over 100 miles, a push bike, not a motorbike!.......and do you know what? They are all lush people. Radiators.

On the other hand.....I watched a BBC programme the other day. The programme was 'Imagine' on the war photographer and photojournalist Don McCullin. He had travelled the world photographing horrific images again and again, and they displayed us at our very worst. Every day the news reports deaths and horrors. They may or may not be happening in our country, or our town, or our street, BUT they are happening in our WORLD. And it makes me very uneasy. We need to learn from lessons past, and not keep repeating these actions, that cost lives, in the hope of a different end. The world and the people in it, will get drained.

Are you a drain? Or a radiator?

I feel very vulnerable. I would be first up for the gas chamber/bullet in my disabled state. So what of the people in a similar situation as me in these places? I dread to think. You think I exaggerate? 'Imagine' revealed blind children, of various ages that had been locked in a room together. They were left in their own filth and with no comfort. The heat was overwhelming, but the warmth of kindness was sadly missing.

There is talk of consequences in this film. And that is exactly it. Think of the consequences of your actions. Not just to yourself, but to others too. Be brave, not passive.

“It's the action, not the fruit of the action, that's important. You have to do the right thing. It may not be in your power, may not be in your time, that there'll be any fruit. But that doesn't mean you stop doing the right thing. You may never know what results come from your action. But if you do nothing, there will be no result.” Mahatma Gandhi. Good bloke.