Friday, 24 June 2016

Who's running the asylum now? #EURefResults

It is true
It seems like a nightmare
But you're awake
Yes really
The lunatics have taken over
Our country is in the hands of the mad men
And I am terrified
Anxiety souring
Peace has flown the nest
Because that was our safety net
Europe is a community
And even when we don't agree
It's a place for sharing
And debate
Where we can relate
Through difference
As much as similarity
Less about control
Than being free
together!



Offering
Borrowing
Not resource hoarding
But now that is gone
We are gone
And soon will be forgotten
All those of us 
Who are seen as less
The poor and lame
The disabled and in pain
At the bottom of the pile
They don't care
To share
They don't wish
To give
What they hold
So tight
So the future's
Not bright
This is my fear
I shed a tear
For those far and near
Who now for years
Might suffer.
You may not agree
But don't shout at me
This is my blog
And my opinions can be free
It is my fear
It is my life
And that of my child
Who, with eyes wide
Left for school
Not knowing who'll
Be running the country
Now an Island alone
Not knowing what
The future outside the zone
Will bring
For me
For her
For the future
Who's running the asylum now?
And how?

Friday, 17 June 2016

What's the point in a bucket list?

A friend posted this bucket list on Facebook today and I was at a lose end so decided play along.

Been Married x
Fell in love x
Gone on a blind date x
Skipped school x
Watched someone give birth x
Watched someone die x
Been to France x
Ridden in an ambulance x
Been to America x
Been to Europe x
Been to Blackpool x
Been to Liverpool x
Been to Newcastle x
Visited Disneyland x
Visited Legoland x
Seen Grand Canyon x
Flown in a helicopter x
Been on a cruise x
Served on a jury
Danced in the rain x
Been to Manchester x
Been to Edinburgh x
Played in a band x
Sang karaoke x
Made prank phone calls x
Laughed so much you cried x
Caught a snowflake on your tongue x
Had children x
Had a pet x
Been sledging on big hill x
Been downhill skiing
Been water skiing
Rode on a motorcycle x
Traveled on a bus, train and coach x
Jumped out of a plane
Been to an outside movie x
Rode a camel x
Rode a Donkey x
Been on TV
Been in the newspaper x
Stayed in the Hospital x
Donated blood x
Gotten a piercing x
Gotten a tattoo x
Driven over 100 mph x
Been scuba diving
Lived on your own x
Rode in the back of police car x
Got a speeding ticket
Broken a bone x
Gotten stitches x
Travelled Alone x

--------------------------------

Apparently this is a UK Bucket List and it seems I'm doing quite well.  But the thing is, I still don't get the point.

Why do I want to write a list of things to do before I kick the bucket?  And, do I really think that the things I could write down will ever be things I'd look back on with regret if I failed to tick them off?

Well no, but then again, yes.  But in a very different way.  The list would be less about things and places and more about people and love.

Don't get me wrong, I really want to go to New Zealand; but since becoming ill it's not because of the place any more but more that I'd love to be with Rachel and experience her joy of a trip.

Mind you, it might be cool to be on the TV.

Saturday, 11 June 2016

Disability Accessibility #poetry #campaign #disability



I am pretty lucky
In our local community
There are crossings aplenty
And fairly good accessibility

But there is one street
Cambered towards the road
I have to use it sometimes
And take it very very slow

I have asked my council
If anything can be done
Since it's the route to the doctors
"Could you move?" is their return

But I'm not really complaining
Because I know it's worse elsewhere
There are impossible places
None on wheels can go near there

When we went up North
On our family holiday
I really was quite shocked
How bad it is for many

Of course in older towns
There is historicity
But still it makes me sad
That those places I can't be

But there's really no excuse
For anything that's new
Yet it can be impossible
Bet it's invisible to you

A badly parked car
Overhanging a walkway
Or parked on the pavement
Means it completely blocks my way

What are my choices?
Take the risk, go on the road?
That's fine if I'm with others
But on my own, there I can't go

Even a tiny step
Of a few inches or more
At the entrance to a shop
Means I can't go in that store

Or a really small doorway
Into a disabled loo
Makes it inaccessible
Yet it won't be clear to you

And what about a manual door
How do I open it and move through?
Let alone two sets of doors
Would a different layout kill you?

This is about my wheels
My scooter or wheelchair
Add to that my sight
And it really is a mare

Can't see the obstacles
Have to assume it's all OK
Until it really isn't
And then I'm in the way

And mostly the public's great
But every now and then
Someone tuts and huffs
Because I'm delaying them

And it really hurts
Because I'm trying the best I can
So if you see someone struggling
Could you offer to lend a hand?

Of course you might be rejected
That is an individual's choice
But you never know just who
Will be relieved to hear your voice

Wednesday, 8 June 2016

Can't really see my food any more

It struck me today, when I was eating on my own, that I can't really see my food any more. 

I don't mean that my eye sight had suddenly got worse, but just that I noticed it in a new way today.  And it occurred to me that I now seek out food which is varied in colour and texture (which is healthy so not one of the worst side effects) so that I can at least try to differentiate between the elements with my remaining vision and cutlery.

I feel my food more than look for it; I try to get a variation on my fork, rather than select specific items; and so far it's mostly been OK. 

Interestingly I've become much less interested in meat; it doesn't look appealing really, where as fish smells lovely and is easy to eat.  And  add in the fact that it's often difficult to cut, which means I need someone else to do it for me because of pain and/or weakness in my hands and it's appeal drops through the floor.

I don't think I've ever really looked at my food very much, which is no doubt related to my eating disorder; and I've concentrated on conversations at meal times, but today I was eating on my own and so it was obvious.

But it also became clear that I'm less influenced by the sight of food and that I'm eating less, I'm actually not interested in it.  I used to get a drink and see food in the kitchen and feel hunger and need to eat, well that's no longer possible and so I'm eating less.

I'm not sure what this says really, but it's interesting to me that my emotional hunger has all been sight led.

Anyway, that was my thinking at lunch today, interesting changes happening.

Friday, 3 June 2016

Folding Electric Wheelchair BPDP 10J Review

A month ago my folding electric wheelchair arrived from Better Products for Disabled People.  I invested my back dated Personal Independence Payment into this purchase after finally agreeing with Occupational Therapists that an electric wheelchair would broaden my life beyond what I could enjoy with my mobility scooter.

I tried lots of different electric wheelchairs before deciding to ask for a trial of the BPDP10J but all of them had one major drawback, they wouldn't fit in our car, let alone in a smaller car.  My goal for the electric wheelchair was to get out and about more with friends in their cars and for work using taxis; but the conventional power chair market had nothing which could help with this.  It was the folding aspect of the BPDP10J which appealed to me and made it something worth trying.



I emailed BPDJ and spoke to Shaun who said he had a customer who would happily bring his wheelchair to me to try.  Within a few days Alan and his wonderful wife arrived at my house with his BPDP10J wheelchair, unloaded it, opened it and invited me to have a spin.  I couldn't believe how easy it was for Alan to get the wheelchair out of his car and was amazed by the simple way it opened up ready for use.  I had a slow, and then quicker, spin around the close outside my home and was sold almost straight away.  My only concern was that the footplate was small and meant I couldn't get my legs comfortable, which I knew would become a major issue with my MS pain.  Alan said that BPDP were looking at making larger footplates and I should speak to Shaun, which I did who said he would make it happen for me, no problem at all.

I can not overestimate the benefit of speaking to someone like Alan who is also disabled and seeing the chair in action; or the positivity of Shaun at BPDP in every conversation we ever had and the way he completely understood what my issues were and what I needed.  I was concerned that I would be getting the first of the newly designed models, but was reassured that they would make sure the chair would be altered to meet my needs.  I was safe in their hands.

The worst part of the whole experience from enquiry to trial to order to delivery was the wait to get the 10J model; it seemed to take forever to arrive from China and make it through customs.  But it was worth the wait, which actually was less than 3 weeks, to have the first of the newest specification models with the larger footplate; it is wonderful.



Over the last 3 weeks I have tested the BPDP10J all over the place.  I started around the house but quickly decided I needed a larger space to practice my turning skills, especially my reversing.  I think this was as much to do with my hand eye coordination, extremely minimal eye sight and confidence than anything.

We decided that the best place to go would be our local supermarket and I put a warning on Facebook for everyone so that they knew the yellow peril (Alan named us thus) was on the move.  I know the store well and have taken my mobility scooter there quite a few times and therefore this was a good place to compare and contrast as well as try out the BPDP10J maneuverability.



Mike and I were both really impressed with how little space it needed in the boot of the car.  It could probably fit behind a front seat if no one was in the back, but we haven't tried that out.  In the supermarket I was shocked by how much better it could get round obstacles and corners, it literally turns on a penny if I get my hand eye coordination sorted.  It can get through much smaller spaces and is much smoother as well as a much more comfortable position, leaving me less tired and therefore more able to cope with the other MS symptoms.  The yellow colour did nothing to help people see me, but I've decided that that's as much to do with being lower and disabled people being invisible than anything else.

I took the 10J to a garden centre, a local coffee shop, to a restaurant, to the theatre, to a scouting meeting and to church over the next few days and the only problems I encountered were that it doesn't cope so well offroad and that everyone wants a go!!

Then this past week we have been on holiday in Lancashire.  We were staying in a beautiful cottage in the countryside and we took both the mobility scooter and the BPDP10J.  The plan was to use the mobility scooter around the farm and anywhere with offroad type elements; and use the wheelchair everywhere else.  Over the week I took it all over Blackpool with great success along the promenade, across tram tracks, down the piers, through arcades and shops and into restaurants;




around Manchester city centre and across to the old UMIST campus;


to a number of different restaurants where it was always the most comfortable seat in the place; and I even got down to the lamb pens on the farm which I really didn't expect to manage.

So, in case you haven't guessed, my verdict is that the BPDP10J is brilliant.  It fits in pretty much any car, it goes on for miles and miles, it's really comfortable and easy to use and it looks cool too.  I won't use it for a walk in the woods, but pretty much everywhere else it is my wheels of choice.
9/10

I have received no remediation for this review, but Better Products for Disabled People have made a £100 donation to the MS Trust in my name.

Below I have provided a video of the BPDP10J in action along with some of the specifications.




BPDP10J Spec:
Folding size 590×325×780mm
Unfolding size 975×590×935mm.
Loading capacity of 180 kg.
It can reach to 6km/h with a driving range of 25 km.  
10J can climb up to 12°.
It weighs 24 kg (without batteries) and 27 kg (with batteries).
It has a seat width-depth-and height of 480mmX430mmX460mm.




Tuesday, 17 May 2016

How accessible is my blog? #disability #images

This image contains a word
Can you read it?

Most of you will say, yes.  But many of those who are visually impaired can not read the word.  This is because they need to use screen reader software to "read" for them and this software has enormous trouble reading images. 

I am lucky, I can use my zoom software to make the image as large as I like to read the word.  And I thought I had made it clear enough that it would be accessible to everyone.  

But I was wrong.
We all need to better understand what it means for our websites to be accessible.  

Here are some simple tips:
provide a good level of contrast
write in plain English
use a clear font with good spacing
explain all images and videos in text
provide the text for any sound files

I hope this encourages you

(encourage was the word in the image)


Saturday, 14 May 2016

How are your eyes these days? #poetry #DrSeuss

Oh the things 
That people say
The words I wish 
Would go away
You don't look blind
How are your eyes
What can you see
Can you see the skies

And patiently 
I answer them
But very soon 
I won't pretend
That it doesn't annoy
And doesn't offend
Because those questions
Will usually send
Me over the edge
Into wondering if
Anyone knows
What it's like to live
With little sight
And lots of pain
And yet they ask
Over and over again

How are you feeling?
You seem OK
I'm glad things are better
Not so bad today?
And what do I say?

Tell me what do I say?
To make you feel better
Coz I think that's it
You want to know
That I'm not so sick
Because that's easier
Than having to see
Really what it's like
Living life as me
And realising
I'm making the best
Of what I've got
I've still got the rest
Of my skills and talents
And beyond the aches
I can use my brain
That's no big shakes

So how are my eyes?
No better, no worse
I'm getting on
I don't feel cursed
In fact I feel blessed
To have technology
And by the way ...
I am still me!



Linked up at Prose 4 Thought


I will still EXPERIENCE the World #travel #disability #spoonie

This morning I read a wonderful article on The Mighty: When I Saw the Adventurous Life I Envisioned Before My Illness Slip Away which spoke a great deal to how I can feel at times.  I recommend that you read it for yourself, but in brief, it speaks of a young woman diagnosed with a chronic illness who is having to come to terms with changing her plan for a life travelling the world. There are days when I can let myself think like this, and these were almost every day in the first six months after loosing my eye sight and realising my mobility problems were not a temporary blip; but most days now I think differently.

My Travel Plans (as were)
I will see everything there is to see in the world; all the amazing sights and people and cultures and buildings and natural wonders.

I will stand on Antarctica and walk in colonies of penguins; drive an RV through New Zealand and see the land of giants; watch the sunset over deserts; trek through forests to see orangutans; worry about bears in Alaska and time eruptions in Iceland; see the Northern Lights and watch dolphins and whales time and time again; try disgusting food because it's better to have tried and disliked than never to have tried it at all.

It was all mapped out, every square inch of the planet a place to be seen and explored and captured with my camera and shared with Rachel and Mike.  It was a life full of adventure and fun but absolutely no bungee jumping!!

My Travel Plans (as I grieved)
There's no point in even trying to go to any of the places I have always wanted to see, because I can't see.  There's no point in expecting to trek through jungles or take a boat up the amazon, because I can't trek or even get on a little boat let alone sit in it for hours.  There's no point planning to see the Northern Lights because they're subtle and will not be bright enough for my little sight to pick up, and I will be too tired by the evening to be able to cope with the trips anyway etc etc.  A spiral of can nots and will nots and impossibilities for the future.

but......
I have come through the grief (I'll be blogging about how that happened) and now .....



My Travel Plans for life
I will experience everything I possibly can in the world; all the amazing sights and people and cultures and buildings and natural wonders.  I will find ways of travelling which make it possible; we are trying cruising this summer to see how that works for me.  I will meet people from different cultures and enjoy their company because it's always been more about their stories than about what they look like.  I will visit the natural wonders and I will hear through Mike and Rachel what I can not see and we will take photos and I will use technology, there at the place, to see it the very best way I can.  I will open my ears and hear the waterfalls; I will touch the rocks and the ice of the glaciers and I will feel the wind and spray from the sea.  I will feel the joy of those around me and my own as I travel with loved ones and place memories in my heart.

I might be in a wheelchair, or scooter, or perhaps in a funky off-roading contraption and I will find a way.  I might need assistance, but we all need assistance from loved ones or experts whenever we travel, it's just a different form of help.

I have it all mapped out and it's the whole world.  I will see as much as it's possible to see and I will see it with the whole of me; I will experience it as me and it will be awesome.  No disability is going to stop me, my only limitation is money and let's be clear, that was always the limiting factor but it doesn't matter in dreams and plans for the future.

Thursday, 5 May 2016

Spring into Spring with Torch Trust #poetry


Spring into spring
Here new lives begin
Building

Building
Peace in creation
Gardening 

Gardening
Therapy with fingers
Growing

Growing
Plants and confidence
Perfection

Linked up at Prose 4thought

A journey through retreat with Torch Trust #poetry


High anxiety
When we all arrive
What will be?

Immediately
Welcoming friendly faces
Put us at ease

No expectations
Come just as we are
Relax for the week

Bedrooms
Comfy and bright
Home from home

Every detail
Thought out with prayer
A holy place

Within a day
Strangers become friends
Sharing stories

Worship
Sustains and renews
Uplifting

Activities
Empower and encourage
New skills

Meal times
Feed body and mind
Fellowship

Now going home
Leaving this holy place
Will return soon

Torch Holiday and Retreat Centre #poetry



Welcomed warmly
Hearts, hands and minds
Completely safe

Completely safe
In Jesus' protection
Everyone valued

Everyone valued
For individual talents
As children of God

As children of God
Supported and cherished
No fear here

No fear here
On retreat with torch trust
Heaven on earth

Heaven on earth
All eternally loved
Welcomed warmly