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.

WHAT DIDN'T WORK:

*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.

WHAT DID WORK:

*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.

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.

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.

Well, today started well, with the delivery of my scooter. FREEDOM!! I can't believe I am so happy about getting one. It's not really what you see yourself needing, is it? But, I didn't really consider that in my lifetime, I wouldn't be able to walk. It's a bit crap to be needing one, but if you do need one, it's best to be chuffed with what it will enable you to do. So, later on, I plan to walk the dog. I haven't done that in ages! And I also want to go and buy a sparkly keyring for the keys to my new wheels! WILD!

So, all things considered, I'm chuffed!

But it does throw a bright light on to my house, and how it's limiting me with it bloody steps. I can't just pop out. I need someone to help me….so, not completely independent then…..
MOVE! I hear you say. Yeah that is the only thing to do. At the beginning of the year, we put the house on the market, and sold it. The sale fell through. And this repeated itself THREE TIMES OVER! Apparently, you can no longer get a mortgage on my type of house, due to the mortgage criteria changing. WHAT!!?!! So, to fit the new criteria, we have to remove the external walls, and replace them with brick……no bother if it gets us a sale…but we have to move out whilst it's being done….WITH ALL OUR STUFF….and pay a pretty penny for the privilege….so, in a nutshell, the next 6 months or so look like this…..

..Find somewhere to rent.
..Move everything and everyone out.
..Borrow shit loads of money.
..Get the house bricked.
..Sell the house.
..Buy a house.
..Move in. Breathe again.

It's going to be crazy, but it will be worth it. The cardboard boxes are already piling up. I best get cracking on filling them. Or arguing over them. My youngest girl is also moving out, to live with her sister. So boxes and tape come at a premium in this house at the moment.

I might just make myself a cardboard forte to live in. Let me know when it's all over. And then I might come out to play. ON MY SCOOTER!!! 

Tip for a conversation starter…..TOILETS OF THE WORLD.

It's the weekend and it's started well! First up, I got in and out of the shower by myself! I can't remember the last time I managed this, and it was GLORIOUS!! But after all that excitement I needed a little sleep. Hey ho…but I woke up to visiting friends, that we haven't seen for a year as they have been filling their boots by travelling THE WORLD!! It was fantastic to see them, and hear their stories of worldwide domination…....WELCOME HOME BREWLIA. And big thanks for the contraband Dr Pepper….
Whilst Brewlia was here, the talk turned to toilets of the world. Obviously. I appreciate a good toilet as much as the next desperate person, but now, due to my 'spacka' status, they have a new found rating element,  THEY MUST BE ACCESSIBLE. I'm not sure the holes that you squat over in India, would quite cut it…….

And today, another friend sent me beautiful video of the Cornish coastline where he lives. Anyone that knows me, knows that Cornwall has my heart. Anyway my Japanese friend….ARIGATOU!

Visit over, and family Saturday resumes with plans for a family weekend…..so it's lunch all round, and a sleep for the little man, a burst on the Batman game, writing my words, then out to a pub for pop n crisps.

Oh, but hang on……I've just seen the lunchtime tablets, that I haven't taken yet, but when I do, they'll knock me out. So, I need to rethink the weekend plans……The good man will be like a single parent AGAIN, as I have a slumber party for one. Apparently, I will get used to the tablets, and I can't wait for that to happen. I'm pretty miffed at sleeping my life away…..I don't appreciate missing out.

Tomorrow we have more family visiting, and one day next week we hope to visit my sister, who is home now, recuperating from having her appendix whipped out.

Anyhoo, I suppose what I'm trying to say, is that it is friends and family that shape us. Family is where you came from, for better or worse, and no choice taken……you get what you're given. Friends are all about choice, with a little luck thrown in…..
Well, on both counts, I feel pretty blessed.

You can read my travelling friend's blog here….


http://www.brewliaworldwide.tumblr.com

Am I a heavy awkward box?

We have just had a poke in the eye with a sharp stick. The Good Man, needing help to access a manual handling course, was advised to talk to our local Centre For Independent Living (C.I.L). The person at C.I.L clearly did not get what The Good Man meant, and popped a Care Services Directory in the post. If you were elderly, and considering your care options, I dare say it would be useful. However, it was anything but, for someone like me. All the photos were of care homes, or elderly people. There was a tiny bit of information about manual handling. Not useful enough for us to actually use. Unless I become a heavy box you might meet at work…….

The information we have on manual handling is kind of like half a job……just a list of villages where the courses are run….and that's it. Oh and there's talk of handling objects and materials. NOT PEOPLE. No dates, no times, no contact information. Ugh!
I need to protect The Good Man. Because I need him to be on top form. And he needs to protect himself. I am not large, but christ on a bike, I can be a dead weight sometimes, that's just immovable. So, the search goes on…….There must be something…….we will keep digging.

So, what's about if you are in the middle ground? I'm not a child, and I'm not elderly, so, what? What is there? Believe me, I'd rather chew my own arm off than ask for help. But, needs must and all that. I'm a bit crap, and I need help. Luckily, I am a bit of a terrier, and I didn't let go easily of the idea, THAT THERE MUST BE SOMETHING! Well, there is something, and blimey, it wasn't offered EVER. The information was well guarded, like I don't know what. Well, anyway, when I finally scaled the wall of this fortress, and I was rewarded with meeting straight forward, helpful people. That treated me like a real person! Joy! (Sing that bit…...in operatic styleeeee.)

As if life isn't shit enough, that when you've been dealt a crappy hand, and have lost your ability to walk, work, drive and be independent, please offer helpful services readily. What happened to me, could happen to any one of you.

And it's lonely.

I can't believe what I am about to write…….

On Saturday we went to Twycross zoo. I rang ahead and asked if it was wheelchair friendly, and I was assured that yes, it was. Well, it was not. I am partly to blame as my question was inadequate. I SHOULD have said that I propel myself, I SHOULD have asked what was the pathway surface made of. I SHOULD have asked if they hired out mobility scooters.

So, I found that,

a, the pathways were loose gravel. This does not help when you are trying to propel yourself. And as The Good Man was pushing The Little Man, his hands were full.
b, they DO hire out scooters, but I wasn't aware of this until the next day.
c, I couldn't access the far side of the park where the elephants were, as I was too bloody knackered.

So, I learnt that,

a, be crystal about what is available to hire/rent people! I didn't see anything advertised. It is on the website, but I had to search for it. Bells and whistles wouldn't go amiss here….
b, I NEED to ask more thorough questions.

So, anyway, I got home thinking the day would have been so much better if I had a scooter. And not just at Twycross. My life would be better. I'd be able to access so much more….

……so, I bought a mobility scooter! I can't believe how desperate I am for it to arrive! It's teal, fits in the boot, and the world will be my oyster again! As long as I don't meet too many stairs or kerbs, that is.

So, that's it… I can't believe I've bought a scooter. I can't believe I'm excited! I can't believe I've waited soooooo long.

Next job….move house…...