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

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.

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.