Tuesday, October 21, 2014

As Newspapers go, generally I'm a fan of The Guardian. It doesn't specialise in sensationalist headlines,  but my view has been tainted by an article in Saturday's paper. This article was reporting on a lady with a disability, and was highlighting the additional costs faced by those with disabilities. As this lady manages to work four days a week, the difficulties that she faces are different, to those with disabilities that don't have the ability to work. Either way, having a disability does encore additional, and expensive costs. The only situation I feel able to comment on, is mine….

Initially I couldn't walk without assistance. So, I was given some NHS crutches. Thank you! However, these crutches were brilliant as a short term fix. I was heavily reliant on them, and, as a result, my hands became blistered and sore. So I looked around and found some amazingly comfortable, non skin blistering ones. But they were about £100. EEeeeekkk. But I reasoned that was a small price to pay, as it meant I could to move in comfort.

Then, as MS rapidly developed, I found the crutches couldn't cope with my wobbly instability. So I progressed to a wheelchair. I was given a wheelchair through the NHS, and again that was brilliant. Especially as it allowed me to work out what did and didn't work for me.


*It was too big and wide for me.
*It was incredibly heavy, making moving, collapsing and lifting in and out the boot, up and down the steps outside the house VERY difficult.
*It's turning circle was HUGE. Not great when you live in a small/average sized house. With furniture. And people. And a dog.


*Being black, it matched my leather jacket.
*When it was collapsed, it went in the boot brilliantly.
*It was free.

I was down to get a better one from the NHS, but I couldn't afford to wait. And the lady on the phone at wheelchair services, reminded me I wasn't a priority as I could sit up unaided. ERrrrrr s'cuse me? WTF? I need a wheelchair because I can't walk. Isn't that a priority? So, with the urgency being one sided, to be clear, FROM MY SIDE, I went searching for one to buy.
I had a little wheelchair knowledge, or so I thought. Turned out, when faced with loads of options, all I could say was that wanted it to be light, and with a small turning circle.

Anyway, I settled on one, and it was ordered, made to measure, and collected, quite some time before I even got a phone call from wheelchair services.

And now I've progressed/declined to a scooter……and so we started that journey all over again….Joy of fecking joys.

I love my scooter, for the reason of what it enables me to do, and where it enables me to go. ON MY OWN. Or, with family, on days out/trips to the park/. As yet, I am to master 'walking' the dog. We get in a bit of a tangle with the lead. And don't even mention the possibly of him have a poo….

Anyway, whatever the disability, and whatever your financial status, I find it best to be as self reliant as possible. And that's where the similarity lies between myself and the lady featured in the article. Working or not, whatever independence you have, hold on to it.

But all things being equal and all that, I really hope The Guardian continues to feature the many different faces of disability.

We all need enlightening, and to be aware that some people have VERY different lives, life choices and experiences to our own.

Wednesday, October 15, 2014

Freudian slip…..

Sometimes, in life, there are moments when you laugh, when it would be far more appropriate to SCREAM!!
If you are unsure what I mean, I'll provide you with an example……

Lord Freud, the minister in charge of over seeing the welfare reform, suggested that disabled people are not worth the minimum wage. AAARRGHHHH!!

I for one, am not alone, in missing work. Now, I'm not a dickhead, I know better than anyone, Lord Freud included, that I can't go back to the jobs I have done. BUT, this doesn't stop me hoping that one day, I will be able to return to the workplace. Working gives a sense of self, recognition, and a good feeling when you have earned your money.

I really do not appreciate you, Lord Freud, telling me, as a disabled person that I'm only worth '£2 an hour' and that I'm not worth 'the minimum wage.'

Oh, but he has apologised. But as it was for his comments, and not for being a dick, or masterminding the bedroom tax, or seeing the growth in the development of much needed food banks, under your bloody nose, whilst criticising people for using them. Again, AAAARRGHHH! And I do not accept his apology. It seems a bit weak in the face of all his wrongs. And I would suggest, that the evidence implies that he is a bit crap at his job. I would suggest that he considers resignation. But, I'm disabled. So what do I know?
I know my worth, and I don't appreciate you, Lord Freud, telling me, and countless other PEOPLE, that we are worth SO LITTLE.
I, Lord Freud, am priceless, and you, have shown yourself to be worthy of the gutter.

Does he even know what welfare is?

To clarify; it can be described as ; 
the good fortune, health, happiness, prosperity, of a person, group or organisation.

Are you bearing all that in mind, with your reform? No?

It would appear that you need reforming. I'm the disabled one? I don't think this job is for you. You seem to have a black spot, and it's interrupting your human kindness gene. And it seems to hinder your ability to care. Bit like a sociopath.

Again, to clarify, a sociopath can be described as;  a person with a psychopathic personality whose behaviour is antisocial, often criminal, and who lacks a sense of moral responsibility or social conscience.

Over and out from me tonight, I need a soothing cup of tea, to calm my annoyance.

Sunday, October 5, 2014

We had a family birthday to celebrate today, so after we'd snacked on the traditional, but crap party food, y'know….crisps, pizza, jelly and ice-cream, we all headed to the park. I had my scooter, and kids lining up to have a go on it. I still have tell-tale chocolate crumbs on the foot plate from last time Frankie! So it was more than ok to have a go, and one of my girls showed me how I could push the little man on the swing and the roundabout, whilst on the scooter……cheers Annie.

Going across bumpy ground is a bit like being on a vibroplate. That's my ice-cream burnt off then. So that's one bonus. Others are:

1, Getting out, especially when it's a family day.

2, Enjoying, and feeling like "I am part of this group," as I wasn't sat on the sidelines, or worse still, at home and alone. Meh to that!

3, Sitting on a bench, enjoying the sunshine.

4, Watching the little man climb a fence, to look at the sheep. Wondering what was wrong with one of the sheep….some of the insides were outside (this ISN'T a bonus!) But he didn't seemed distressed… (Back to bonuses again…..)

5, Being grateful that I'm not a sheep. Especially THAT sheep.

Well, I better get banging the country drums on that sheep's behalf, otherwise a fox might have a good meal. My husband's family used to keep a small flock of sheep. ALWAYS move sheep inside to have their lambs. Outside, they are vulnerable to predators. A fox will eat a lamb as it's being delivered, and there is nothing the sheep can do. Horrid.

Some things don't mix. Foxes and sheep. Me and MS.

I do my best to get along with it, but really, I just wish it'd do one. I'm not cut out for this life. As it is, I feel like a predator is circling me, waiting to take me down, waiting for me to show a moment of vulnerability. Luckily, my fighting spirit is fortified. It is fortified by the love from the good man, the little man, my girls, friends and family. And this protects me from the circling predator. The predator is there, always there, but whilst I have the protection of others, I feel like I have shelter.