Monday, December 1, 2014

Sayings that hit the spot…..

I recently stumbled on to two sayings that I hadn't heard before, but they really made think, and I feel at ease with their punchy to the point kind of way…..….

So the first one was,

'Beauty and Ugliness.'

I have this is SPADES……the ugliness that has intruded into my life, and has altered and changed so VERY much and has bought so many changes. I have lost so much, but it has also allowed me to have the BEAUTY of time with my boy, and my growing, ever changing family. And I'm here.

The second one was,

'A strong back, and a soft front.'

Oh to master this one……well, I think my back is pretty strong, but it could be stronger still, and to have a soft front would, I think make you approachable. And again, I'm not too bad here (you have to ask my family for confirmation of this, or otherwise here….) but I could be better! The right combination here is essential! Can you imagine the potential mess right there, just waiting for you to cock up. Ugh, the beauty of having a family, or people in your life……you never stop learning.

And I guess that's the thing….you can always learn. You can always teach. But you never stand still. You know stuff, but you don't know it all. Never will. Understand that, and life will be peachy.

Monday, November 24, 2014

Sometimes people amaze you with their brilliance…..and right now I'm amazed with my girls. They have just organised and taken part in a 24 hour sponsored bike ride for the MS Trust. And it's all in preparation for their bike ride from London to Paris in 2016. London to Paris? That a bloody long way! But what an achievement that will be!

So right now I'm feeling pleased with my lot. I went over and saw them on the static bikes, and cheered them on. I chatted to people I'd known for a while and also to new people.

It's amazing what can be done when people pull together, and how it can make people feel. I'm sure the girls feel good, and so pleased. As do I :)

Thanks to……

*The Daventry Rugby club, for allowing the girls to hold the event there.

*The Training Shed for the loan of two exercise bikes.

*Everyone who gave their time and support, riding, sponsoring, supporting, providing refreshments.

*Special love and thanks to my girls, their partners and the good man.

Monday, November 17, 2014

Why does walking equal worthwhile?

I would guess that the title would give you an indicator of how this is going to go, and that maybe, JUST MAYBE I am a little bit pissed off.

I am from a small town, and whilst the vast majority of people I meet are helpful, there are exceptions to this rule, as there always is, and these exceptions make me want to stab myself in the face. Or maybe not. But you get the idea….

Just because I am using a wheelchair or a scooter, it doesn't mean that my mind and voice don't work. And even if they didn't, it doesn't mean I wouldn't appreciate being talked to. Not about, in or out of earshot. Or at. But to.

I can't imagine that this has a difference internationally, so this is my plea to all you readers. If you should meet anyone that appears different, or without some ability, and you have something to say, or ask, PLEASE talk TO that person. I promise you, that it will be appreciated.

I tell you what's not appreciated. Sometimes, I catch people do a double take of me and the Good Man. And I even had one of these double take fuckwits say to me, "He's good, isn't he? Being with you." To which I replied. "No. He's LUCKY to be with ME." I could've said SO much more, but we were in a public place….

Today was an exception, with people treating me well and like a normal. And that's sad. Because it should not be an exception. It should be normal. Because, I am NORMAL….. ish. I have thoughts. I have feelings. I have a voice. What I don't have are working legs. That's all. And even if it wasn't, it doesn't mean that it's ok to treat me, or ANYONE ELSE as less.

And to think, I'm the one that's described as being without ability.

Saturday, November 15, 2014

A girl can dream...

After a busy busy time of late, I'm pleased to report, that thanks to the help of our amazing friends, we have moved! Everything is in, and in it's place. So whilst the necessary building work is under way at our house, so we can sell it, I am viewing this as a six month holiday from reality. I have a garden I can get in to, and a loo, both downstairs AND upstairs…..What more do I need? And it is GLORIOUS here!! Tiny, but glorious. And now I have internet, and a phone, I can dip in and out of the world.

So, the building work has started, and already loads has been achieved. Now, if the building work could be completed, the house sold, and a new place bought and moved into, in time with our six month tenancy here ending……well, that would be AMAZEBALLS! I'm not asking for much really…..
And it would appear that I've left my writing mojo behind. It's probably packed away in a box of various bits and bobs….

I don't know if it's because I've kicked backed and relaxed a bit, but I am just chillin' here…..
I mean I look at houses on the internet…..the good man has been to the house that's undergoing a facial and backside uplift…..and it's looking great! But until it's sold there's not much more to do….except enjoy my time here….

Which is a little tricky when I've heard someone refer, correctly, in my opinion, to MS and all the varied and great joy it brings, as a prison sentence. A sentence that is life long, and is issued randomly with no crime being committed. At least sometimes MS behaves enough for me to get day release.

And that brings me neatly to my wonderings/wishings…….What would I do if I didn't have MS for a day? Well, call me crazy, but probably nothing grand….

1, Go for a walk, holding hands with the good man and the little man….on a beach! Or anywhere actually…...
2, Have a shower. Standing up.
3, Drive.
4, Go to the gym. Swim. Do yoga.

I AM ONE CRAYZEE MO FO. Now if I had a week I could probably be found on some beach in Cornwall….I LOVE it there…..I could just sit and look and think and look and look some more… so…..

A girl can dream…...

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.

Monday, September 29, 2014

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!!! 

Saturday, September 20, 2014

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… 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….

Monday, September 15, 2014

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… 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.

Monday, September 8, 2014

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…...

Friday, August 22, 2014

Today, we thought we'd get up and out. We had until early afternoon, and the world was ours for the taking until then. So, we headed to a local art gallery to see an exhibition called The Best Is Not Too Good For You. As is customary, we decided before entering to select a favourite piece. This really gets you to LOOK and really SEE. And by chatting about your choice, it adds another layer too, y'know?

Surprisingly, or maybe not ;) we both chose the same item, that being an Anti-Slavery Medallion from 1795 'Am I Not A Man And A Brother? ' It was about the 3 cm in diameter in size, so small, but it packed a punch. It will be in my head for some time. If not, for ever.

I was an Art student, back in the day, and my work was picked to be exhibited at the same gallery, and I felt SO PROUD! And I still am. I need to re visit this dormant part of me. WAKE UP!!

Maybe this is one of the reasons why the medallion hit a chord. Somebody else reminding that a person's colour is nothing of note. Segregation was based on skin colour alone. Maybe this is why it hit home. I identify with a struggle to be seen as a whole person. I get overlooked. Not everywhere is welcoming to me. I have to PROVE my worth. And my worth is more than my wheelchair. Sometimes, my chair is all people see. Sometimes, colour is all people see. Neither of those attributes make the person.

And then we had lunch in a place that has now witnessed the little man having a strop. Well, he is 2. And we witnessed the weather go from sunny to not so sunny in no time. Which was nice. Anyway, back home in time to meet the man who is changing the door in the little man's room. And not before time! You know those jobs that just hang round, patiently waiting for you to pull your finger out? Yeah well, I have a little list, and the door is just the start…..

So anyway, the best bit about today was that I wanted to go to the gallery, and I did, and it was accessible. This may not sound like much, but it is. There's a world out there, and I want to fill my boots with it.


Saturday, August 16, 2014

Today has been one of those days, that has seen me sleeping LOADS, needing a shower and missing out on family time. Whilst this is VERY annoying, it's because I've been doing stuff. Win some/lose some.

Two days ago The Good Man and I got the little man's room ready. The good man did the bulk of it, so  I probably shouldn't blame my knackeredness on that.

Then yesterday I went out with friends for afternoon tea at a beautiful place near me. The scones were out of this world, especially piled high with jam and cream, but the best bit is just chatting with friends and being treated as a 'normal'. When I am with them, it seems that my wheelchair is just an accessory, and a valued one at that.

Last night we were visited by friends that I went to art school with. It's always good to see them, and reminisce about the old days. They both work in the art world, but more importantly, they're HAVING A BABY! And brilliant parents they will be. Lucky baby!

I was hardly being a crazy party animal, but today has been spent in bed. Ridiculous init? And as I write this post, I'm in my pjs and in serious need of a shower. LUSH.

Whilst I know I'm blessed to have friends, and people to do stuff with, I really hate the consequences.
Back in the day, I was ALWAYS busy. And I miss that. I spend too much time on my own NOT doing stuff, and it drives me crayzeeee. I need to make a plan. Because I'm driving myself nuts. But what to do…….?

Sunday, August 3, 2014

It's that time again, where I drive my family mad, with my bleatings of  'but what shall I write?' And there is so much around at the moment…..


I mean, what the hell? A friend summed it up with the words, 'Say a group of people were constantly throwing bricks through your windows, slowly moving your garden fence closer to your house and no matter how many times you screamed for help, no one would come….. '

Anti-gay laws.
Shootings in America.
Missing planes.

…..and whilst these are worthy of attention, they are worthy of so much more than anything I've got to say. 

So, sticking closer to home, I am so happy to report that my 3 eldest girls are planning to raise money for the MS Trust, by cycling from London to Paris. At the moment they don't have bikes. Well, they do, but they're rusty, flat contraptions not worthy of riding down the road. But, they have over a year to prepare. And luckily, we have people around us with very useful knowledge, that are making themselves available to offer help and guidance. So, BIG THANKS to you all! I'll keep you posted on how it all goes……

And the other day me, as director of operations ;) and my youngest girl, cleared out the shed. The shed was a bit like a Tardis, and as it's guts were spilled on to the lawn, I found myself wondering how it all fit in there. And why have I kept 25 or so paint cans? And WHO decided to keep a bit of broken pipe? The car was filled for a tip run, order was restored and we celebrated with an ice-cream on a good job well done. It was a really sunny day, and don't ask me how, but I burnt one leg. One leg! How?

What's really caught my eye in the papers, is the fact that Alison Lapper is back in the headlines. For those of you that need a reminder, she is the lady that topped a plinth at Trafalgar Square, as a pregnant, naked model, for the artist Marc Quinn. He made a statue of her, and as Alison has been born with no arms and shortened legs, she is not your 'classic' model. The image challenges, and makes you think. Much like Alison herself… can read her interview on 2/08/14 here:

There seems to be support for parents of disabled children, but not so much support for parents that are disabled, and as a result 'we're being watched, so we have to be 150% better than everybody else.' Says Lapper, and I couldn't agree more. And regardless of anybody watching and waiting for me to fuck up, I know I'm doing a good job.

And I have a happy little man, a girl willing to take on the shed, and girls prepared to cycle to Paris, as a result. Who could ask for more? 

Saturday, July 26, 2014

Summer is well and truly here, and as such I have lavender in pots in the hope of helping out the bees we need, and a beautiful hanging basket, and the garden has been trimmed and tidied. And it's looking pretty lush. Which is good, because The Little Man likes to play jungle, and now his pathways are clear to do exploring, AND the whole family is descending tomorrow. Best make sure the paddling pool is ready then.

I love getting out in the garden, but sadly I need help now to do so. The garden is sloped. Not much, but enough for a wheelchair user. And I LOATHE being pushed. So anyway, The Good Man came back from work, with some ramps, so I could access the garden by myself. BONUS! And I have done! Brilliant!

And then…..a friend came over, so we went in the garden. Paddling pool, Little Man, ramps. Let's go!
I don't know what happened, because I have used the ramps countless times, but ……..I tipped back and BANG! went my head, elbows and my back between the shoulder blades. Christ on a bike… bloody hurt! And my poor friend could see it all happening, probably in slow motion, so she ran down to where I lay, with my knickers on show, feeling very winded and like the back of my head had caved in.

So, fast forward to the next day, and my head and elbows feel better. However, the same cannot be said for my back and neck.

The sun is still doing it's thing, so I tried again today…..SUCCESS!

However, summer, and the sun, is a double edged sword for those with MS. The sun gives you vitamin D, which is excellent, and helps your body regulate the immune response, so helping to reduce your relapse rate, but keeping cool is paramount, due to something called Uhthoff's phenomenon. This sees a worsening of symptoms, due to your core body temperature rising by as little as 1/4 of a degree, and in me, presents itself as a boneless lump, sort of a mess really. Well, that's just shyte then.

Best go and get sorted for tomorrow. There's shopping to be done and family to feed.

Sunday, July 20, 2014

Congratulations to Sally and James……..

Yesterday, I went to a wedding. The couple getting married had been at university with The Good Man, and I had met the bride, just the once. Preparations had been undertaken, in the form of shoes and the loveliest dress, and this was done in plenty of time, leaving me shed loads of time to have my customary breakdown.

Anyone that knows me, will tell you that I am accessory queen. I have been raided in the past, by friends and daughters, who are looking for that perfect necklace/bangle/hair clip/scarf/shoes/bag/nail varnish to go with an outfit. My wheelchair… accessory, it is not. And no-one is queuing up to borrow it. Despite that, and despite myself, I have to say I do love it. It enables me, mostly, to get around.

The wedding was in an old church, next to the vicarage, and this is where the reception was being held. And it was BEAUTIFUL. I found myself just looking at my surroundings. I was left silent, and just looking, and watching. Stunning. There was a marquee in the garden, and this held it's own, just, whilst fighting an almighty storm. The storm cleared, and food was had before we descended on the garden, sitting on bales around fire pits.

I get nervous meeting new people, especially in groups, but really, again, there was no need. I am an idiot. The vicar even had a ramp, and this also helped. And where the ramp was needed, but couldn't be used, there were people willing, and happy to help. The fact that they were mostly marine boys, offering to carry me, didn't really register. AT ALL ;) And nor did your knee in my back, Mr Fox ;)

People offered to help, and asked if I needed anything. And however I responded……No thanks…….Yes please, could you just blah blah blah…….was fine. And that, was a joy. And quite a rare joy. At social gatherings, there is usually at least one person, who seems intent on forcefully trying to make me realise that I don't know what's best for me. Well, I am the boss of me, and I am not here to make people feel better because they helped the poor disabled girl.

Sometimes in life there are moments, that pathetic fallacy comes in to play. Often you won't realise it until you reflect back, and when I got home I realised that my emotions very much matched the turbulent storm. Feeling sad/angry about being in a wheelchair, excited to be dressed up in that gorgeous dress, and spending quality time with The Good Man's friends, tired (always tired), and most of all anxious. However, as we all know, weather changes, it develops and sometimes it can develop into something beautiful. Last night my view was of a peaceful and beautiful lake and it could only be described as serene. And that's how I felt. My two youngest girls at home (getting along... what?) while the little man slept, The Good Man by my side but chatting and doing his own thing, and me, feeling human again.

click on the pictures to enlarge them, to see the true beauty

I'd like to wish Sally and James a beautiful lifetime together, and offer my congratulations on an excellent day. You kicked off your life as Mr and Mrs in a relaxed and seemingly effortless and beautiful style. Long may it continue.

Sunday, July 6, 2014

Yesterday saw my village getting together for the annual get together on the green. There was a band playing, and a marquee called The Pudding Tent, where most people donate some kind of pudding thing for everyone to dig into. People turn up with picnics and drinks, or use the local pub that faces on to the green, for refreshments. It's always a good event, so I decided (after a few years absence) that I would go along.
And man, it was busy! I went down with my daughter who was helping out at the pub for the night, and as I live at the top of the street that joins the green, I thought, 'Perfect! I'll just go down in my wheelchair. It'll be fine.' Fine it was not. My daughter had to jog to keep up, and I had underestimated how steep it was, and just how many potholes there were. Still, I had time to think about my decision when I hit a kerb at speed, nearly flew out of my chair, whilst being serenaded by my daughters shrieking.

Anyway, I got to the green and was met by some kids who had seen my descent, and decided, on their bikes and scooters, to challenge me to a race. I was up for that, but sadly I was left eating their dust, as they left me standing. Or rather, sitting.

I saw several groups of people that I knew, and have known for a loooong time, since before I had to accommodate MS, so it was good to see them and chat about any old thing.

And of course, it was a perfect place to do a wheelchair challenge! I gave up my wheels in favour of a  garden chair and the games commenced! I thought I'd go easy on them, when I set the route, so I  decided they should just go up the slightly battered road and back. At first glance, EASY! No grass, no kerbs, not very far. However, the first contestant revealed it to be trickier than it looked. People seemed to find it incredibly difficult to even go in a straight line… person turned around, so they were backwards and a bit stuck. The winner was declared, but as a man who does The Iron Man thingy it may have been too easy for him, but he assured me it was difficult, much harder than he'd thought it would be. His daughter, (6 1/2) put me through my paces too, as she was asking questions. 'Why do you use a wheelchair?' 'What's wrong with your legs?' 'But I saw you stand up. Why can you stand up, but not walk?'

I was set my own challenge when I needed a wee. I had to go in the back of the pub but luckily, the tradesman entrance was right by the mens loo…..that'll do….. I'm not fussed, especially as a man checked it was empty, and then kept guard for me…..I came out to find a queue of men, who were looking a bit confused.

I had another challenge getting home. My friend came with me, and thank goodness he did, I HATE BEING PUSHED, but I could not have got home without his help. Especially as there are five steps to get to my front door and a path too, I can honestly say I have never found it SO bloody difficult. Normally, I can do it with the help of crutches and a hand rail, but last night both feet seemed stuck to the floor, and my legs were reluctant to bend, so this made the steps bloody hard work. Thank goodness for my friend again! The good man had stayed home with the little man, and I can definitely say there's no place like home.

But apparently, my home is fine for me, according to the local authority, who, apart from the hand rail, and the offer of a stair lift inside (that was then withdrawn), refuse to accept I need help. Surely I should be able to get in and out on my own? And access all of my home? And garden? Well, I can't. Do you call that fine? Aren't I just a bloody demanding diva?

That's what I call a challenge.

Wednesday, June 25, 2014

So it's the middle of the night here (3.45am) and whilst the rest of the house is sleeping, I AM NOT. So I toss and turn thinking about the day. I went out with the little man, and we were chauffeured by one of my girls. She was most excited as she hadn't witnessed me using a mobility scooter before, but I was less thrilled. I still can't really get my head round it.

Still, get my head round it I must, as it's one of my girl's birthdays soon, and that was the reason for the shopping trip…..there are presents to be found. And my driver is heading off on a girls holiday soon, so I got her a dress for that. I gave her a choice…….dress or fuel?….dress or fuel? It somehow ended up dress AND fuel. Mission completed, we head for home.

I also had friends visiting for the evening. One had knackered her shoulder so I gave her some reflexology, and that really helped. BOOM! I felt dead chuffed with that. Seeing friends is wicked, but it can also leave me feeling like I am left behind from the real world, so to help someone out, also helps me out, because I feel like I have something to offer, and that feels good, y'know?

When I was tucked up in bed, WIDE AWAKE, I spent an hour or so on Rightmove. I was looking at houses in my price range, but stupidly, at ones in Cornwall. I'm an idiot. I love Cornwall, but sadly, I can't move 4 girls and their lives too, so Cornwall will have to wait. They can leave me for their own adventures, but I won't leave them.  Not even for Cornwall……...and it's beaches, and it's icecream/chip stealing sea gulls/the Tate Modern/all year round flip flops…..well, maybe I could be persuaded……..the girls can always visit, it'd be just like a holiday home for them ;)
Cornwall is a bit of an oddity as far as ms is concerned. Globally, the further away from the equator, the higher the incidence of ms. In this country, Scotland runs true to form with this statistic, but Cornwall is the closer to the equator, but the incidence is really high. It doesn't make sense, but I'm sure, in time it will be understood. I reckon the Cornish peeps are chuffed, something to keep us Northern types away, and stop us from eating all their ice-cream and scones, and taking over their beaches.

The little man has nursery tomorrow, so I can catch up on sleep then. There is a bird nattering away and annoyingly twanging the aerial just above my bedroom, but, in spite of that, I'll give sleep another chance…...

Sunday, June 15, 2014

In my last post I said that I need to get on with practicing my driving. The Good Man and I went to pick up an Indian take away and I DROVE!! ALL THE WAY THERE AND BACK!! The fact that I was grimacing for the whole journey, we can overlook. It's so tricky, if you ever get the opportunity to drive an adapted car, take it, and you'll see what I mean! Still, I did it…..BOOM! GO ME!!

For those of you wondering how my car may be adapted, I have a lever that accelerates and brakes, and this lever also has a control for the indicators. I have a choice of attachments for the steering wheel and this is uncomfortable to hold (often leaving me feeling like I have little control - sort of like I'm one step removed from driving).

It feels as if I'm trying to learn to drive again, and I'm fighting against years of driving the conventional way, and the adapted way feels unnatural. My friend who taught my daughter to drive and is preparing to teach my next daughter to drive (good luck) is coming over to accompany me in driving again and to cheer me on, and hold my hand, and I can't wait.

I've broken the back of driving… challenge….taking the little man to a park……
Wish us luck!

Friday, June 13, 2014

Following on from my previous post, I want to say a big thank you to my girl for that crumble, it was delicious, as was the bolognaise she made the next night. So it's fair to say, that as I write this post, I'm feeling fat and happy.

Happy. That's a funny one. I have so much to be thankful for, that makes me truly happy, but sometimes, I feel overwhelmed with loss. The biggest loss, that's had the biggest impact, is the loss of walking. This means a myriad of other losses…..

A, Walking along whilst holding hands with the good man, or the little man. My hands are either taken up with crutches or with the wheelchair.

B, Umbrellas. Seriously. What a thing to miss! My hands are always busy, (see A), hat hair it is then. Could be worse I suppose……I look ok in a beret, but most hats are too big for my pin head.

C, Not being able to take the little man in the garden, or down to the park (both are inaccessible). This really gets me, as he is such an outdoor boy.

D, Midwifery. I loved this, but you can't deliver babies whilst in a wheelchair/on crutches. I got into my second year of training, was diagnosed in my first…..that's how quick my descent has been. I would initially walk the corridors (yes, WALK) and I'd be literally bouncing off the walls, like I was drunk.

E, Driving. The loss of this ability makes the world SOOOOO small. And it doesn't make sense to me, the car is adapted……why can't I do it? Writing this has made me determined to try……AGAIN……Driving an adapted car is very different to how you drive 'normally'. Bravery AND practice needed.

F, Independence. I have gone from being very independent to being so dependent. E has something to do with this……so I best get on with practicing my driving then….

I'll let you know how it goes….. 

Sunday, June 8, 2014

Yesterday, after the rain had done it's thing, was a good day. All of my family were here, except for the good man, and we were able to get in the garden. I sat on the door step and watched as they messed about…..rides in the wheelbarrow, kicking a ball about and eating ice-cream.

The little man is a real outdoor boy, so to see him running around is just great, his fat little feet in sandals, and he thinks the soil in the plant pots is the best thing EVER. He even manages to get the soil in his nappy…..bath time needed tonight then.

The good man got back from work earlier than expected too, which was a BONUS.

Today is the complete opposite. I'm alone in the house. And it's odd.

One weekend. A game of two halves. Polar opposites. A bit like my life. The 'used to be' life v's 'how it is now' life.

And the silence is broken… phone call and one text within minute of each other alert me to four people descending any minute now. And so we begin a re run of yesterday.

So anyway, what I am trying to say is make the most of what you have, whilst you have it. I did not make the most of my mobility when I had it. Well, it's rather that I took it for granted. I suspect most people do. My advice is, don't.

Now please excuse me, as there's strawberries to look at, and one of my girls has a new boyfriend to introduce. And one girl is pulling rhubarb to make a crumble, and I need to give instructions if she hopes for an edible pudding.

P.s….The boyfriend, by the way, got the thumbs up from me.

Thursday, May 29, 2014

Comparisons. Generally, they are helpful and especially useful when it comes to making decisions. However, sometimes the opposite is true, and instead of trying to decide which option is best, you are faced with a between a rock and a hard place situation. And that's a bit crappy.

What kicked off this limited train of thought, was that when I wake, the first few seconds are blissful. Just lying there, awake and sandwiched between The Good Man and The Little Man. Heaven.

And then I try to move, and it all comes rushing back, crashing through and mindlessly constricting my everything. You'd think I'd be used to it. But no. I've adjusted, yes. But used to it? No. I hate it. And to accept that this is the best I'm going to be? Marvellous. Fucking marvellous.

So anyway……back to comparisons……in the olden days, I would often be up at 5.30am after not getting in from a shift until 11pm. Straight in the shower, breakfast, dress, makeup and hair, note to the girls and off I go to another shift. Care for mothers, deliver babies, be a mum, food shopping, gym and a social life. Life was busy and I loved it like that.

Nowadays….hhhhmmmm…..I can shower on my own, mostly, and dress myself, mostly. Food shopping is mostly done online, and there is no gym. Social life still exists, but it has suffered shrinkage, like a gastric band has been fitted to my friendship group. Life is not busy and I loathe it like this. But still, I try to make the most of it, as this is the best it's going to be. Unless there is a medical breakthrough/miracle. And there will be. But in my lifetime? Dunno…...

Alongside this is the development of The Little Man. He is becoming more active and climbs on whatever he can, the dog is his best mate, and today when there was a little girl asleep on the TV, he started snoring.  And he gives the best hugs, whilst patting and saying ahhhhh. This is reserved for family, including the dog. His development is going to continue, and so is that of Multiple Sclerosis, and that's just how it is.

So, I'd best make the most of it, as it is now. Because one day I may look back on these days and remember them as golden.

Sunday, May 11, 2014

It's Sunday afternoon, and it's taken me this long to not recover fully from a trip, (scooter bound) from yesterday, that, may I add, lasted all of 40 minutes. Short and sweet it may have been, but it was still an eyeopener.

First up was the little girl that said to her mum, "Why is that lady in there? Is she poorly?' Cue the little girl being whisked away and being told not to stare. And hands up, I was a twat, and ignored the whole thing, when in retrospect, I realise was probably wrong. I should have spoken to the girl, and answered any questions she may of had. Otherwise she may grow up believing that she cannot talk to people who are a bit, well, different to the 'norm' and you best ignore them.

Then I got stuck in a disabled loo. It was really quite big, but sadly not big enough to manoeuvre a scooter around in with ease. So, I bent the basket of the scooter in my efforts to turn around. Then when I got to the door it wouldn't stay open. Luckily, a young lady shopper was alerted to my difficulties, as she probably heard me swearing, and she held the door open for me. Thank you! So I popped the dent out of the basket, and carried on.

Next up was the shoe shop that we were taking the little man too. We had some faulty shoes to return but the kids department was really busy, so replacing them proved tricky. BUT hats off to the young lady assistant, who was very helpful, offering to clear obstacles and fetch shoes, and just making me feel involved, rather than a bystander. Gold star to her.

Accessorize was a bloody nightmare. I wanted some hair clips, and thankfully, they were on the first display, but however, all the displays were so rammed together, it was difficult to move, and get to the till. Even if you were a walking size 8 contortionist, it would have been tricky. Spacka friendly, it was not. Still, I got some very nice clips, and only knocked one thing over, (which I picked up, of course, I'm not an animal). So, all in all, not a complete disaster.

Back in to the shopping centre and amongst a very strange breed of people. Despite being a wide load (due to the scooter, you understand) people kept walking AT me, as if they were stuck on a track and must not deviate from the course they wish to take, NOT FOR ANYTHING! So I'm weaving in and out of people and resisting the urge to mow people down.

So, yesterday was a real mixed bag, which saw me saying, "Remind me NEVER to go out on a Saturday AGAIN!" and I really meant it, but then I remembered I'm going to my sisters and we have a date with Meadowhall and bra shopping, also on a Saturday...... I think I'll have some fun though by extending the wheelchair challenge to scooter challenge and the first contestant will be my sister. I can hear her squeal with 'excitement' from here.....

On the way home we went to an ELC and Mothercare shop. I had gift cards from Christmas for the little man and spending them was a joy. I guess they are used to catering for people with bumps and pushchairs and this transfers to,

a, room for pushchairs = room for me, or anyone in a wheelchair/on a scooter/or crutches/or a stick.

b, toilets! In a shop!

c, helpful, friendly staff.

d, Displays on the shop floor, that I can reach. I only need help reaching the wall displays , and this     
in itself is a gem, as it enables independence, and independence is underrated until it's under threat.

One of the things I got for the little man was a set of school children, and one child was in a wheelchair. How could I not buy them?! 10/10 to ELC for that bit of inclusive thinking.....genius!

If more shops were like this, it would be a amazing. Not to mention a joy. I cannot overestimate how incredible it is to go somewhere, and to be welcomed, served, and treated like any old customer. And for that, I'm happy to spend my pennies there. And isn't that what makes a shop successful?

Sunday, April 27, 2014

Whoop Whoop You Da Man!

Today, I went to watch a friend take part in a Wolf Run. And very impressive it was too! For those of you that don't know, Wolf stands for woods, obstacles, lakes, and fields. The run is set over 10 kilometres or 6.2 miles, and includes all these types of terrain. I was at the finish, where I got to watch the wolf runners jump in a big, chest deep trench full of thick muddy water, up and over a slick muddy hill and down into another trench.

I was amazed that everyone taking part looked so happy. Maybe it was because the finish line was in sight. Or maybe it was the camaraderie amongst the runners. Whatever it was, I was impressed. It wasn't a race, and people were helping each other out. People of all ages and sizes were taking part too. I met my unbelievably muddy and wet, but happy friend, and gave him what was possibly the best chocolate bar EVER.

As for me, I also felt like I was undertaking a massive challenge, wheeling myself over fields, so to congratulate ourselves, all six of us, plus the little man, went to the pub for a good and much needed roast, or the veggie equivalent.

As for the friend that took part, I've known him since the olden days......the days when I was walking, driving, studying, working, gyming, swimming......and now that's all changed for me, BUT I haven't changed in who I am. And he treats me just the same as he always has. And for that, I will always be at the finish line with a snickers.

Check out the WOLF Run Website here for details of the next big run if you'd like to take part. HERE

Saturday, April 19, 2014

Those of you that know me or have been reading my blog, will be familiar with Wheelchair Challenge. Today it was the turn of my daughter whilst we were at the shops. I sat in the cafe, by the window (good view) with a drink, whilst she wheeled herself to the cashpoint (which was up a slight hill, and by slight, I mean if you're a walker it was slight, but NOT so slight if you're wheeling yourself), and then got me a few things from the shop. She encountered a couple of interesting people....

....first up, the dickhead that said to the person he was with 'she'd be prettier if she wasn't in a wheelchair'


The next person up was a helpful chatty man of good humour. My daughter dropped a packet of cashew nuts, but then couldn't pick them up, so man number 2  said he'd get them for her. He huffed and puffed a bit and said,

'To be honest, I can hardly get them myself'

Daughter, 'Why?'

Man, 'Because of my belly.'

Daughter, 'Oh' He gets full marks here. It's not often this daughter is stuck for something to say.

Man, 'Why are you in a chair?'

Daughter, 'It's because of my mum.'

Man (shocked look)

Daughter, realising she needs to extend that....'No no, my mum is in a wheelchair, so she gets me and my sisters, or anyone really, to do what she has to do when in a chair, because otherwise we don't get how it is to be in a wheelchair.'

Man (probably relieved), laughs and says ' That is BRILLIANT! '

Meanwhile, I was chatting to a couple in the cafe. We watched my daughters success, or rather, the alternative route she took, to get to the cashpoint. Because she found the slope at the crossing too steep, and therefore couldn't get on the path, she had to stay on the road. As she was going along the back of the parked cars, I was envisioning a disaster, featuring a squashed daughter AND a squashed wheelchair.....I'm still trying to decide which would have been worse...... ;)

Thankfully, both the chair and my daughter returned safe and well, with my daughter relaying her findings. So, it's a 50/50 split at the moment between the dickheads and the helpful normals. I would dearly love the helpful normals to win here, why don't you all join their team? I reckon that team will win.

Wednesday, April 16, 2014

My feeling was sadly not one of surprise, when I read that a Town Major had had to resign from his position, for making offensive remarks about disabled people. To quote, 'Are we still letting those Mongols have sex with each other?'

Deep, cleansing breath and......


Does he include himself in that statement? And he's hoping to get lucky? Is he trying to find out if he has a chance?

I, as a disabled person, would rather boil my head, than share time, conversation or bodily fluid with someone so ignorant.

And also what's with the 'letting?' Is he in charge of who ruts who? Is he a self appointed sexual prevention officer?

I tell you what this smacks of. Nazi eugenics. Is he thinking of forced sterilisation? Like the enforced sterilisation of an estimated 400'000 people in 1939? By 1940 the hospital beds were needed for the soldiers of the second World War. So this then deemed that a 'final solution' was found for the 70,000 people with mental impairments. That final solution was the death of all those people, 'with lives not worth living.'

Now, you may think I've made a bit of a leap here, comparing Mayor Nick Martin's comments with Nazi eugenics, but I don't think the leap is that large. It's this kind of opinion, that's hidden behind a public mask, that makes it all the more dangerous.

He should watch himself. Because he has clearly displayed that he is somewhat lacking on mental clarity. And because of that, he could well end up on the undesirable short list himself.

Friday, April 11, 2014

Congratulations to Mr and Mrs Curtis.

Yesterday I went to a wedding. I had been getting in a right pickle about going, because I would have to go in my wheelchair and I HATE going out in it, because sometimes, the wheelchair is all that people see. And it's not the best talking fact, it can at times be seen as a barrier to people. They don't talk to you. And I'm guessing here, but I suspect it's because of,

A. People really don't know what to say or how to be........'Do I say anything about the chair? Why is that person in it? Can I ask? Would that be rude?' So then they opt to say, nowt.

B. People are scared that either the person in the wheel chair won't understand them, or they won't understand the wheelchair user, so then again, they opt to say, nowt.

C. Or people read the Daily Mail, and they suspect you of benefit fraud, and whilst they admire your attention to detail, they don't want to associate with a criminal. So then they opt to say nowt.

So the first mini melt down was had, and I gave myself a talking to. As did the rest of my family. Sorted. The day arrived and the weather was beautiful. The good man and I knew what we were wearing, we had all day baby sitters (big sisters), and we knew where we were going.

I just had time for a second melt down, an hour before leaving.
MY DRESS DOES NOT DO UP OVER MY BOOBS!!! SHIT! So this sees me wearing a different dress that I love, and it fits me well, but it struggles to be a respectable wedding length when you sit down. SO, NOT A GOOD COMBO WITH A WHEELCHAIR! Ah well, it will have to do. And so we leave.

We arrive at the beautiful destination and I SNAG MY TIGHTS! RIGHT ON THE FRONT OF MY THIGH! And with my dress riding up as I'm in the wheelchair IT'S ON FULL DISPLAY. As I'm sure, is my lady garden.

The place was totally accessible, with a disabled loo, and this combination makes for an easy day. It was just unfortunate that every time I needed a wee, so did the good man. So to anyone paying attention, it would have looked like I needed help to use the loo. Or, more likely actually, that the good man needed assistance. Independent emptying of both bladders was had. And back to our table, where I challenged everyone to a Wheelchair Challenge.

The route was set. Start on the patio, down the little lip, over the grass, round the tree, and back up the grass, and back on to the patio to finish. It would take 20 seconds to walk the route, over the grass that walkers would observe as flat, but wheelchair users would notice as bumpy, lumpy and sloped. And that little lip transformed into a mountain face. Happy with my route, I took up my place on a garden chair and watched the games begin. Like a Roman Emperor.

It was really interesting actually. About seven or so people took part, with varying levels of intoxication, and competitiveness, but all with the same level of enthusiasm. The winner completed the route in 1 minute 40. The prize was the glory felt by the winner, and the admiring looks from the losers. Good work Joel.

A fantastic day was had. And I'd like to say thank you to Phil and Emma for sharing their day with us. Best wishes and big love to you both for a cracking future. You kicked it off well with an awesome day. Xx

Me and the Good Man before leaving, taken by my lovely daughter

Wednesday, April 2, 2014

Today my blog is one year old....HAPPY BIRTHDAY TO BALANCING ON THE EDGE!! If you were watching me set the blog up, you would not have thought I'd get through one post, let alone one year. But in the last year, I have somehow managed to do 67 posts, and I am about to hit 17'000 world wide page views. And THAT I think, is cause for celebration. It's also reason to thank my long suffering technical family and friends.

Birthdays and anniversaries are sometimes a time for reflection. So, looking back over old posts I see a reminder to listen to music and read. The family is coming and going today.....a mixture of work, appointments, college and I will make use of the peace to finish my book. The music's already on....

For mobile readers click HERE

Enjoy your day.

Monday, March 31, 2014

This weekend saw me watch a video, that left me hopeful for the future. Everyone that knows me, will have heard me say that I can cope with all that MS throws at me, but not walking? THAT, I find so very hard to cope with. But this man, Hugh Herr, seems to hold the answer. He said something very interesting....people weren't broken, technology was.

He looked to remedy this and as he is the head of biomechanics at MIT (Massachusetts Institute of Technology) he is well placed. And as a double amputee, he understands EXACTLY what is needed. And he's looked to remedy it. An amazing man.

Please watch the video here. It makes me hopeful for the future.


Saturday, March 29, 2014

This weekend saw that homosexual people can get married. On reading a bit around this topic, I was surprised and shocked to read of some opinions that were anything but supportive. But then again, I wasn't surprised at all.

As far as I am concerned, if two people want to commit to a life together, then go right ahead. It's no business of mine, or of anyone's. Marriage is does not need to be differentiated because of the sexuality of the couple. People that are committed to one another, and a life together, is good for everyone. We all stand to benefit. We cannot divide or ostracise a section of our community if we all want to live happily and peacefully. But we cannot help ourselves, can we? We have historically always ostracised some section of the community. Wether it's because of gender, race, sexuality or ability someone always gets it in the neck. And who benefits from this? Because it always results in trouble, disharmony and unsettled communities.

The one good bit of reading I did come across was by Sandi Toksvig.....she knows what she is talking about from personal experience. You can read it here.....

In my reading, I looked for ridiculous laws, and found that in France it is illegal to call a pig Napoleon. There was no mention of eating it though, so I guess that is fine.
I don't know how true this is, but it made me laugh.

It has also been mentioned that wedding cards have upped their game. This said by a friend who was attending a wedding today. Good good, long may things continue to improve.

Now, I have the house to myself, so I best go. I plan to eat crisps, drink Ame, and listen to Elbow. Enjoy your weekend.

Monday, March 24, 2014

On Friday I did something that I'd said I'd NEVER do. I went out with a friend to a shopping centre and I used a mobility scooter. And it was AWESOME! And so was my driving actually....apart from when I hit a wall. And got stuck in a lift. Hey ho.

But it meant that I could go to more shops, look at more things, and just generally not get so knackered! Normally, I use a wheelchair, and wheel myself. And despite the fact that my chair is light, comfy and turns on nothing, it is still so very knackering!

I went alongside the canal (there was a wide flat path, but it still felt a bit risky!) and out for lunch, and I was basically grinning the whole time! It was a sunny day too, which made it for me. Scooter + sun + leather jacket + new purchases = freedom and smiles! Now I've broken the back of my scooter fear, I'll be doing it again. It took me quite a while (years actually) to accept that I NEED something like that in my days. It's not what you picture yourself needing EVER, is it? And I did fight it. But at the end of the day, getting out and about wins hands down.

The only thing that confused me was that I noticed there was a difference in how people were towards me. On the scooter I found that people were more chatty and like the scooter was invisible...I was just me....What's that all about?'s to the next outing!

Monday, March 17, 2014

About a week ago I watched The Best of Men. This was the second time I had watched it, the first time being when the Olympics and Paralympics were here, in England. For those of you not familiar with The Best of Men, it's about the Mandeville Games and how they went on to develop into the paralympics. The man that started all this was Dr Ludwig Guttman. Dr Gutmann was a Jewish German specialising in neurology, who came to England in 1939, and he settled in Oxford.

He worked at Stoke Mandeville, where he set up a ward specifically to care for the amount of people from the forces that found themselves with varying degrees of paralysis, due to injuries sustained in the war.

The biggest hurdle he faced was changing the view of others, including the medical profession, that despite the injuries that these people sustained, they could still contribute and achieve.

Guttman felt it was essential to restore hope and self belief in his patients, as well as practical retraining so that when they were well enough to leave they could once more contribute to society. And with this in mind, he decided to introduce sport to help rehabilitate his patients. Gutmann knew the benefits would be psychologically positive to his patients. One thing led to another and soon the Stoke Mandeville Games had begun. Initially this was with only two teams competing, made up of men and women.

 Word spread about the Stoke Mandeville Games, and in 1952 competitors arrived from Holland. By 1954, you could add Australia, Canada, Finland, Egypt and Israel to the list.

Rome, in 1960, held the first paralympic games, with athletes from 21 countries.

Over time the games have continued to grow with categories to include blind people, and amputees, and those with cerebral palsy, and still it continues to grow, with new games being added. In 2012 more than 4200 people from 164 competed in the Paralympics, and in Rio de Janeiro in 2016 there will be more games added, to a total of 22 sports.

I should think that Guttman is pleased with the legacy that he left.

Saturday, March 8, 2014

So today is International Women's Day. I am ashamed to admit that that this was the first year that I had heard of it. Especially as it's been running for about 100 years.

So what's it all about? It's about equality, or rather recognising inequalities, and wanting to set them right. In some countries it's recognised as a national holiday, and in some cases this day is taken as holiday, for women only. One of the things that triggered the start, and indeed the need for this day, were issues such as voting for women. But that battle has long been won, won in 1918 (here in the UK, anyway.)
So do we still need International Women's day? Yes. Because battles are still needed to be fought. Like the battle for equal pay. This battle has seen Birmingham City Council sell the NEC in order to settle a bill, a bill created by their lack of equal pay. Why would a man be paid more than a woman, for doing exactly the same job? Why? I'm yet to hear a reasonable and understandable response to this question. Probably because there isn't one?

Click here to read a very interesting article

for mobile viewers click HERE

And in the spirit of equality, yes, there is an International Man's Day, on November 19th. This day looks at men's and boy's health, and promoting male role models, amongst other issues. And no, in true equal styleeee, I didn't know about that either.

Thursday, February 27, 2014

A friend of mine sent me this to watch. And it's amazing. What makes it all the more amazing, for me anyway, is the simple message.....


Watch and see what you think.

Wednesday, February 26, 2014

Every now and then, I get frustrated at the hand life has dealt me. But also, every now and then, people pop up like glowing beacons and I am grateful to them.

The first up to get my thanks is Danielle Sheypuk and Carrie Hammer. Carrie is a fashion designer who wanted to use role models in her shows. Danielle has a Phd and is a practicing psychologist. She earns her money, and wants to spend it too. She enjoys fashion, and like she said, disabled people wear clothes too. And she has cerebral palsy, and is a wheelchair user.

It makes financial sense, that if you sell a product, to appeal to as big an audience as possible. Businesses have been tapping into the pink pound and the grey pound for a wee while now. It makes financial sense to tap into the *disabled pound too. However, I go to the shops, and it's rare that I see other wheelchair users. And it's not because we don't exist, or need stuff. I believe, and through experience too, that places aren't particularly accessible. Even new places. I bet you some person in a hard hat had made a decision about what would work, without EVER getting in a wheelchair and trying it for themselves. If you're going to drop a kerb, drop it so it's flat!

My second thanks go to Francesca Martinez. She is a comedian, actress and campaigner. She also has cerebral palsy. I like what she says, and you too can read it here.....please do.....

To the unknown person that gave me the present of books.....I'm getting to them I promise you, and I can't wait! I am a slow reader these days and I'm still working through, and enjoying, The Casual Vacancy. You have probably given me a years worth of reading, and the pile is patiently waiting, and your card is permanently displayed too, and these things still make me smile.

*I have a problem with the word disabled. All words pre fixed with dis signify being without. In this case, without being abled. I have difficulties, yes, and things are different now, BUT I am NOT without ability.

Friday, February 21, 2014

I have been absent due to sickness bugs and news that has occupied my mind, and now I emerge, it's to find chaos....


What is going on? It's all very unsettling. Where is the care?

Aristotle is often quoted as saying,

 'You can judge a nation by the way it treats it's most vulnerable citizens.'

And whilst this is true, it's just a starting point. Because I would also add that it's about equality and money too.

  'Seven Deadly Sins

Wealth without work
Pleasure without conscience
Science without humanity
Knowledge without character
Politics without principle
Commerce without morality
Worship without sacrifice.'

Mahatma Gandi.

Don't be without. Because otherwise you are just a taker. And sadly, we all know people like that. People that are only there when there's something in it for them. But when the tables turn, they are nowhere to be seen......

And all's gone quiet on the North Korea front. And the nuclear reactors at Fukushima in Japan. Are we so occupied that we've forgotten? Because that's when things creep up and surprise you, and that surprise will not be good.

First they came for the socialists, 
And I did not speak out,
Because I was not a socialist.

Then they came for the Trade Unionists, 
And I did not speak out,
because I was not a Trade Unionist.

Then they came for the Jews,
And I did not speak out, 
Because I was not a Jew.

And then they came for me, 
And there was no-one left to speak for me.

Martin Niemoller

And this man knows what he's talking about, as he spent 7 years in a concentration camp as he was outspoken against the Nazi party. 7 YEARS!
We all have a duty of care to speak out about unjustness. Don't fail to speak out.

Saturday, February 1, 2014

I've lost count of the amount of times that people have said, 'But they help you, don't they.' These people are referring to my physical predicament, and how my home no longer works for me. These people, when pressed, cannot tell you who 'they' are, and what qualifies as 'help.'

So, I'll tell you about my experience of the 'help.' Several years ago I contacted my local home improvement agency (HIA) based at my local council. I was finding the steps at the front of my property difficult, so a handrail was installed. The same was done inside, alongside the stairs. Magic! Thank you! And for a while, that was enough. But as time passed, I degenerated, and I needed more help. An occupational therapist (who'd been hired by the local council) wrote a report saying I needed a downstairs bedroom and bathroom. And she was right.

Let battle commence......

The council denied me this help because they said....

a, my house was too small.

It's a 3 bedroomed house. If I applied for a council house, I would be eligible for......a 3 bedroomed house.

b, my house is excessively cold.

This said without the council measuring the temperature. Ever. Not once. Let alone over a period of time. 

c, my house is uninhabitable.

d, my house is worth £47,000.

I am linking c and d, because my house was valued recently by 3 estate agents with an average of £180,000. And ALL of the estate agents said I didn't need to do a thing to prepare for sale, as it was presented beautifully. And what bearing does the value of my home have on my needing help?

Never once did the council back up what they were saying with facts. Probably because they didn't have any. We, in our fight back, provided facts, professional opinions of builders, architects, surveyors, solicitors and Foundations, a government body set up to oversee all HIA's. We had to go through 3 stages of complaint, and then on to the ombudsman. I had faith that here, at least, we would get a balanced view. Well, that bubble popped when it became apparent that the ombudsman dealing with our case, didn't know that disabled adaptions are VAT exempt. I wouldn't expect the average person on the street to know this, but if it's what you're dealing with in your job, then yes! You should know it!

When you work, you have no choice but to pay into the pot. When misfortune befalls you, in my case in the form of a bad luck illness, you believe the pot you paid into will be there, to support you. What you find instead, is that someone is holding the pot lid on REALLY tightly. We put up a really good fight with that lid, but sadly, the grip was not loosened. And we left the fight battered, bruised, disheartened and empty handed. But proud of the fight we put up.

'They help you, don't they?' I can honestly say, no, they do not. They have, however, made me feel like a worthless piece of shit.

So, what now?

Monday, January 20, 2014

Today I cried. And the reason for my tears was because someone had read my blog about my New Years Resolutions, and that the desire to read more, was one of my resolutions. So, three books were delivered to my daughters work with a covering note. They had read my Resolutions blog and hoped the books would get me going, then they wished me Happy Reading! And then they didn't sign it....

So, to whomever you are......thank you so much! Even though you made me cry......THANK YOU!!
I am unfamiliar with two of the books, but one I did know about, and I wanted to read it, so again.....THANK YOU! That is one resolution that I can firmly tick off now. Happy days!

My daughter, who the books were delivered to, also came across this quote....

The best moves in life are made in silence. Don't talk about it. Just do it and let everyone else talk about it.

Well, we are definitely talking....

Sometimes the kindness of strangers is overwhelming.....

We are having to raise money to make adaptions to our home, and this weekend was also the weekend of the pub quiz fundraiser at our local pub. The couple organising it, are not strangers to me. But as I entered the pub, I was more than amazed by the amount of people present. And they were, for the most part, strangers. Garden furniture had to be bought in as the seats were running out. All these people filled not one, but two bars and the restaurant too. There had been generous donations also, for the raffle. So generous in fact, it seemed a never ending task for my friend to get through!

The bar was drank dry of beer, vodka and wine, and the leaded windows got steamed up by the boozy a good night, all in all!

So the last few days have served to make me feel as though I'm not walking/wobbling/wheeling the journey that is ms alone. There are life rafts and leg ups aplenty....and for that I am grateful beyond belief.

Tuesday, January 14, 2014

Congratulations to me! Resolutions are going well so far.......ish.

1, Listen to more music......And right on time to help me out, Elbow release another album. I have pre ordered it, so that will be a good surprise in a month or two, when it plops on to the door mat. Guy Garvey is a bit of a genius, so he will always have a place in my heart. So until I get his latest offering I best get busy with the music that I already have.

2, Read more......I am cracking on with my new purchase. Purchased with these resolutions in mind actually, and with a desire to succeed, I chose Casual Vacancy by J K Rowling, and very good it is too. It is a novel aimed at a more adult readership than her previous incredibly successful offerings. I didn't jump on the Potter band wagon (unlike my daughter, who has extensive knowledge of all things Hogwarts).

Rowling and Garvey notice the little things, and report them back beautifully. Be they the heartbreaking or the ordinary things, the way they pitch those things is to make the ordinary extraordinary.

3, To get out more.....not an easy one, as I can't do this independently, but out I have been. The good man and I went out for lunch the other day, and I have plans with friends this week too, and the pub quiz to attend that's being put on on my behalf too.

4, To enjoy being in more......I had friends round last, crisps, chocolate and chatting. I've know those friends for an awful long time....pretty much a lifetime actually, and there is always news to share, and ideas to discuss.

5, To laugh more......hhhmmmm.....this is the tricky one, as despite the many good things I have, life is like a set of scales, and there is a bag of crap dumped on the scales, that is tipping the balance. MORE WORK NEEDED HERE.

6, To notice more......and with Garvey and Rowling as my can I fail? It's the little things.....notice the little things, and verbalise them. I am fond of saying to the good man, the little things are the everyday glue. And we all need help in keeping it glued together.

7, Just be more........Doing all of the above and getting no 5 sorted, how could I be less?

I have also been continuing with the grand clear out. And I'm enjoying the space that this has created for me, my family, and my walking, inquisitive little man.

Here's to being more. Best get cracking on with no 5 then, and back to my book.....

Until next time....

Thursday, January 9, 2014

In my last post I mentioned that MS was my nemesis/redeemer, because along with the horrific crap, there have been many good things that I've gained/learnt because of it. That said there are a few people, amongst the many, I'd like to say thank you to for their metaphorical leg ups. I am blessed to know many people that are forthcoming with help and friendship, and I'm grateful to them all. But right now, these two get the first two virtual hugs.

My first shout out is to a lovely lady who helped me with all things blog related, and her assistance was much needed, especially in the early days. Computers and I are not the best of friends, so tears and frustration were regular features, as were cries for help from this lovely 'if she doesn't know it, it's not worth knowing' lady.

Her blog is exquisite and mainly focusses on the delight of what we put on our table, with her writing oozing with personality, and experiences, charm and it entices you to read more. Click on the link below the photo to read her blog, the photo was sourced from one of her blogposts.

Also, a local lady, and her family, are also putting on a pub quiz event. All funds raised from this, will be going to me. This lady has a nothing but kind nature, a trait that is often devalued in today's society, she makes me laugh, and her hard working, charismatic personality rubs off on you and makes you feel warm inside. You would want her on your side, in a pub quiz, or just in life.

Without doubt, MS is hard to live with. But what makes it easier to live with, is the people around you, and the leg ups they readily give you. And for that I say THANK YOU!!

Wednesday, January 8, 2014

Long time ; no words. Absence does not always make the heart grow fonder, but sometimes chooses to encourage forgetfulness. With this in mind, and fearing my words would be forgotten, I felt panic rising, and I found it increasingly difficult to make sense of the words crashing around inside my poor muddled, but vacant head.

This year kicked off with me having a move around of furniture, in a bid for space for me, the little man, and our family. Every now and then I can feel the walls closing in on me, so periodically I have a clear out. I swear I  can breathe a little better as soon as the last bag heads off to the charity shop.
What better way to start the new year feeling revived, and with a lung full of clear air and space to move?

As the house got cleared, and order was restored, so too was my thinking about what to write.

So what do I hope for in 2014? Well, for me, I'm continuing with space, and I plan to maintain it. I really believe your home is a reflection of your mind. A cluttered jumble seems to result in cluttered jumbled thinking. No thanks to that! Space to think. Space to live. Space to breathe. And this results in a space to enjoy. And as I'm home ALOT it has to be that I'm happy to be in it, and to raise my boy in it, and for my family to spend time in it. It has to be the heart.

So, tis the time of resolutions. For me, it tends to be more successful, if I take something up. Something I want to do, or something I realise I am missing, and plan to reintroduce. So, I plan to listen to more music, to read more, to get out more, to enjoy being in more, to laugh more, to notice more and to just be more.

The key to successful resolutions, successful anything, is to be realistic. Which brings me to my nemesis/redeemer MS. This also requires you to be realistic. I have made it my business to find out about the drugs, about the trials, about the disease. Only with knowledge, can you be realistic. So that said, here's to knowledge, here's to being realistic, and here's to 2014.