Saturday 12 November 2016

MS Calling has gone home to LLM Calling

I started writing MS Calling exactly a year ago, it seems like it's been so much longer than that, but it really was 12th November 2015.  MS Calling: A bit of an Introduction

Looking back it's clear that I was hoping to keep the MS as a part of my life and therefore I started another blog to keep all talk about MS at a distance.  But what's become clear over the last 12 months is that MS is part of me, and that it will have less control over my life when I accept that it's part of who I am.

In reality, MS has been part of my life since I was 17 (possibly longer) but because I never had a diagnosis for all the crazy things which I used to experience I just got on with it.  Well guess what - I'm just going to keep getting on with it - after all I don't have any other choice.

What this means for blogging is that I'm bring MS Calling back into the fold and taking it under the banner of LLM Calling.  I haven't entirely figured out how that will work for the existing posts - because I don't want to loose the posts which I have written over the last year - but I am sure I will find a way.

All new posts I write about my life, no matter what they refer to, will be at LLM Calling - that's everything from parenting to marriage, from faith to politics, in poetry or prose, from physical to mental health, from birth through to death.

Everything together, accepted as part of the whole.
Come and find me soon.

Friday 14 October 2016

Tonight we'll see equal @rnib

Tonight's the night
To see through sound
I won't be alone
Feeling blindly around
Both Mike and Rach
With specs designed
Will know what it's like
For me being blind
Funnily enough
They're pretty nervous
About what they'll see
Is that the purpose
Well yes, but no
It's more a case
That doing this
Puts them in my place
Just for one night
So they can see
What life can be like
For me being me
Truth be told
I'm nervous as well
How will they cope?
Only time will tell
But one thing's for sure
No matter how they fair
After this experience
We'll have much to share

An evening out with MS

This evening I'm going out.
And not just going out to a friend's house or a church meeting, but out out.

(Not quite this out out though:

Into London with the family to the see through sound concert raising money for RNIB.

This is a big deal.
A really big deal.
It involves a lot of different forms of transport
which all cause pain in different ways;
new places I don't know and so can't see in my mind;
decisions on the fly which are not easy with disability;
anxiety about how it will be
and excitement to be going.

We're staying overnight in London at a budget hotel which Rachel thinks this is an amazing treat.  But in reality it's because neither Mike or I think I'll have the energy to cope with getting home late in the evening. And besides, who doesn't love a cooked breakfast in the morning.
But even that will take a lot of energy.

In all, this trip will take a couple of days worth of energy, possibly even a week's worth.  It's not like it used to be, or like it is for most people is it?  But it's possible to do and it's worth it.

To pull this off, the whole week around today has been planned to the smallest detail.  And here, with the help of cat photos, is what today and tonight will look....

Stay in bed lying down until 11am

Keep my feet up until 2pm when we leave

Stay as calm as possible, allowing Mike to take control of the travel

Lie down at hotel for as long as possible before concert

Enjoy the concert without embarrassing Rachel

Sleep as late as possible tomorrow morning

Come home, possibly after finding some Pokemon, 
depending on how I feel and how sight, pain and fatigue are doing

Hopefully that'll mean fun for us all and I won't end up in a crazy mess.  
Time will tell. 
Watch this space.

Cat photos taken by Inge Wallumrod and used under Creative Commons License.

Thursday 6 October 2016

Each new day #nationalpoetryday #messages #sayitwithapoem

Each new day
When we're out 
Others scowl
Eyes roll about
But I can't see
Those who frown
Or if they stare
If they're not keen
On my wheelchair
And to be honest
I don't care!

It's MY chair
It gets ME out
And in its yellow
It might shout
And not blend in
But why SHOULD I?

Should I hide
Or stay inside
Well, yes
Some say
Hide away

Not until 
I can't get out
Until I'm stuck
And even then
We'll find a way
Not sure how
But that's for 
Another day

Until then 
I will try
The best I can
To live my life
Coz this is just
How it must be.

It's not the way
That we had planned
But with my chair 
White stick in hand
I'll live my life
The way I hoped
With loved ones near
With as little fear
As we can muster

Though that's often hard
But disabled card
Gives access
To caring ones
So off we go
To try it out
Somewhere new
It might be nowt
Worth writing 
Home about
But what's to lose?

Every day's
A chance to say
Hi world
What you got for me?
What shall I see?
What shall we do?

My vision's just
As huge as ever
Physical limits never
Seem to stop the mind
In it's dreaming
Nor stop God
In His leading
Of my life
In my calling
So I'll just
Keep on following
Don't know where
It is going
But the rowers
Keep on rowing
We've no earthly
Way of knowing
What will come
Or what is going
To happen.

In fact
This could be you
Ten years from now
Or only a few
Months away.
What would YOU say
If YOU could see
What will be
Would you change
Your life
Or will your life 
Change you
What should you 
Do today
What have you 

Take the bull
By the horns
Hold on tight
And charge
Don't hold back
You lack
The choice
And even then
Whilst you have
A voice
In each new day

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.

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