Sweet burn #recipe #poetry #haiku

Sweet burn
Roast butternut squash
Caramelised

Shall the blind see?

Blind shall see
It's not true for me
Holy week

Why since loss
Do I hear this miracle
All the time

I don't see
Yet I see completely
Not blind

Easter week #poetry #haiku #HeisRisen

Easter week
Jesus alive with us
Alleluia

No people pleaser
Jesus is resurrected
I'm lieing down

He doesn't lie
Alleluia Easter day
He is risen

Hugged too tight #MSWarrior #poetry #haiku

Hugged too tight
Breathing really tricky
Nervous wreck

Faulty system
Where's the reset button
Nerves misfire

To exist or live
Why should we have to ask
Cruel choice

One day of stress
Leaves me less than impressed
About my MS

Energy horror
All run out, splutter, stop
Day of rest

April's child #haiku #poetry

April's child
Full of graceful showers
Blooming wonderful

Spring blooms
Colourful eruptions
Brighten the cold

Tears of separation #poetry #haiku

Tears flow earthward
Watering my heart's drought
When I miss you

Count through pain

Five minutes is
Three hundred seconds
Count through pain

Question your hunger #eatingdisorder #mentalhealth #poetry

Question your hunger
Angry? Lonely? Tired?
Starving?

Sun therapy #poetry #haiku

One hour warmed
Soul zings, nerves calm
Free therapy

Restoring sun
Bathing with healing
My lucky charm

Vitamin D
Heals, restores, warms
Such need

Come oh sun
Your weather heals me
I'm helpless

MS family tree #haiku #mspoetry

Peatland bog
No home for potatoes
MS family tree

Emerald isle
Roots of my family
Feels like home

I think this
Branch holds the roots
Of MS

Forest church #poetry #haiku

Forest church
Finding God everywhere
In the park

In the park
Letting them let off steam
Blessed relief

Sentinels truth #mswarrior #haiku

Sentinel's truth
Rapid progression, they
Didn't stand guard

That's how it is
Let down by my body
Feels rubbish

Anxiety #mentalhealth #haiku #poetry

The worst of me
I try to hide away
Anxiety

3am awake
Fears tumble in fight
Nights darkest black

Courageous saviour #Easter

Jesus suffering
It hurt him to save you
Courageous saviour

Turn to him
What do you have to lose
He loves you

Bad accessibility

Beneath bad access
A culture of exclusion
Bad for business

Poor access?
Shame on you, you'll be named
Don't be vacant

Ramps, wide space
Not that tricky really
Huge improvement

Think about all
Try a day on our wheels
Then you'll know

Owls cry #goodfriday #haiku

Owl's cry
Piercing nights veil
Mouse alert

Jesus' cry
Piercing eternities veil
Humanity alert

Poor Shop Access #disabledaccessday

Everyone else
Welcomed without barriers
No wheeled access

I wrote this when we were sofa shopping. It never occurred to me that even warehouse size shops full of furniture would exclude those of us on wheels, but they do.

Shame on you sofology and SCS; is my money worth less to you?

Chores never end

Chores never end
Fibonacci spiral
Mum at the sink

You've no idea
How much I wish I could
But I can't

Amazing news from the DWP #poetry #treasuredmoments

I know, I know

There are two words

In that title

Which shouldn't be together

But believe me

It's true

I'm not pulling your leg

Despite all my fears

I've been approved

Yes approved

For full, full, full

Enhanced PIP!

And more

Yes there's more

It's approved

"Ongoing"

Which means

I don't need to worry

About what will happen

In two years

Or three

Because it should

Just keep rolling

I feel like leaping

Except that I can't

But I'm really ecstatic

That the stress has passed

And it's been agreed

That I deserve support

In terms of money

From this Government

So what will I do

With this money

That's coming?

The first thing's a wheelchair

An electric one

I'll post more about that

When I have it in my hand

Then there's pain relief

In acupuncture

and Physiotherapy

The money

Should cover

One session a week

And then there's a car

Which makes travel easier

A Motability car

Again I'll blog 

When we decide

Which car is right

But for now

This Easter holiday

It means

For Rach and me

That we can get about

We'll get in a taxi

And we won't be so stuck

Reliant on everyone else

This is what it means

Getting back

Some independence

Being able to live

My life as me

That's the crux of it all

PiP is approved

So I can get back

As much of my life

As possible

Hurray

You might like to read my poem before the assessment

Today I have to prove I'm disabled

This poem is linked up at
#TreasuredMoments

#BloggerClubUK

Easter Family Time #haiku #poetry

Easter Time

Is Family Time

Together

Hanging Out

Scoot Walking by the Sea

Selfie Taking

Wind Swept

Warmed by the Sunshine

Gorgeous

Easter Time

Filled with love and hope

Perfection

This is linked up at

#TreasuredMoments

Child of Mine #haiku #poetry

Child of mine

You're my entirety

My meaning

This is linked up at
#TreasuredMoments

Messy Easter at PPP

Yesterday
Good Friday
The hardest day
Unless you're messy
Then, in so many ways
This is THE day
To hear it's OK
Jesus died
For you
He loves..
You!
Today
Tomorrow
Yesterday
Through it all
Come what may
Hear him say
"I love you"
And know it deeply
That's our message
Happy Easter.

At PPP Messy Easter Garden yesterday we heard the full Easter story and responded by making chicks and eggs, crosses and tombs, angels and disciples and the risen Jesus.  We entered the garden, we ate hot cross buns and we celebrated the good news. 

Happy Easter.

On the way

On the way
To the flat today
We took a short cut
Down a single track
And we, got, stuck!

No way forward
No way back
We ..... sat.

Mike stressed
Didn't like the rest
Wanted to do his best
To get us on the move.

Rach and I
Were just fine
Whiling away the time
Chatting
Laughing
Selfie taking.

And then I decided
To see what was out there.
I turned my camera
And shot outside.

Zooming in
I could see
What I couldn't
Without the tech.

Trees in the sunshine
Fields full of green
Ponies wondering
Glories of spring.

It was quite sad
When at last
The block was past
We were again fast
But it made me laugh
When we passed
That pony
In the road
A slow load.

Thanks pony
For showing me
Spring beauty.

Stop getting angry about Easter eggs

According to the Daily Telegraph Cadbury is removing the word Easter from their Easter eggs. 

This article drives me mad because it raises an issue badly.  After all none of the Cadbury Easter eggs have had Easter on them for years, I don't think.  It's just that they used to make Easter egg hunt packs which now are just egg hunt packs. 

But surely the more important point, which is what The Real Easter Egg from the meaningful chocolate company is trying to get across, is that almost all Easter eggs have no connection with Easter, the Christian festival, at all.  That's why I buy The Real Easter Egg and give it to family members.  As a Christian I make the choice to do that, knowing that it's good news to be shared AND that it's fairtrade chocolate.

But let me be clear; as a Christian I put this chocolate egg issue WAY DOWN my list of things to be angry about.  After all...

The world doesn't end because of it.
God was around way before Easter eggs.
Jesus never ate an Easter egg. 
Hundreds of years of Christians never had Easter eggs.
Easter eggs are a commercial opportunity which has jumped on the Easter festival.

So what's higher up my list of things to fight for as a Christian?  What do I really care about this Easter?

- Poverty
- Social injustice
- War
- Terrorism
- Global warming
- Child abuse
- Lack of acceptance of each other and our beliefs
And much much more

As a Christian I celebrate Easter and it's nothing to do with the Easter eggs; it's all to do with the sacrifice Jesus made of himself for us all and the mission He gave us to fight against injustice and serve those more needy than ourselves.

And you know what?
Cadbury, through their foundation, do a fair amount of this; so let's focus on that rather than getting angry about chocolate.

This post is linked up at:

Brilliant blog posts 

http://honestmum.com/brilliant-blog-posts-24th-march-2016/

#TreasuredMoments 18/03/16

Welcome to the #TreasuredMoments link-up.
The place to share treasured moments in poems and blog posts.

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An InLinkz Link-up

Micropoems written on #worldpoetryday

Every day

Come what may, I write 

And Tweet

These today

World Poetry Day

No less or more

Here to see

In reverse chronology

To you from me

Blind shall see

It's not true for me

Holy Week

xxx

MS Warrior

Strength defeated

Fallen knight

xxx

Eyes distort

Create otherworldly 

Truths of life

xxx

quiet together 

words superfluous

tonight and always

xxx

Butterfly kisses

My tortured heart

Moon dust enfolds

xxx

Perfect moonlight

Streams of blessing

Shards of pain

xxx

Tolerable pain

I keep on surviving

Attaboy

xxx

Reach for the star

No matter who you are

A bridge too far?

xxx

Translucent skin

Butterfly's wing

Paper thin

xxx

One day of stress

Leaves me less impressed

About my MS

xxx

Coiled tight

Ready to spring open

Beautiful rest

xxx

Survived PiP assessment

Now the wait to hear

Here's my poem 

All about my fear

xxx

Childhood dreams

Gravity defeated

Swing higher

xxx

Dreams of flying

Weightless, painless

Up, up and away

xxx

They assume

Without a doubt

That I'm faking

For money

What little they know.....

Today I have to prove I'm disabled

Today's the day
Of my PiP assessment
The day they decide
If I'm worthy of payment
For being disabled
And in order to do that
They're going to question me
About what I am able
To do
And their trying
To catch me out
Because they assume
Without a doubt
That I'm faking
For money
What little they know
Why would I fake
When it's so degrading
Why would I fake
And reduce my living
Can't they see
From the doctor letters
And occu therapists
That I'm blind
Yes blind
But that's not enough
For them to say
Yes
Without interrogation
I also need to prove
That pain
And exhaustion
Lack of balance
And stumbling
Is real enough
To deserve some help
To pay for the stuff
Like taxis around
Because I can't drive
And vision aids
Stuff to survive
As a human being
But perhaps that's it
They don't really care
Not one little bit
That it hurts enough
To be incapacitated
To have life reduced
Not one I created
I'm a burden now
And one they must rate
How bad is it
How much can they hate
Us disabled people
To make this the process
So I'll go along
Though it causes me pain
Stress sky high
I'll do this again
Talk about life
In all it's embarrassment
To a stranger
It feels like harassment
And all the time
I'll pray
It's OK
Not only for me
But for everybody
Who has to go through this
Day after day
All of us lined up
Proving our worth
Or lack of!

Linked up at:

#Anythinggoes

#MarvMondays

#BrilliantBlogPosts http://honestmum.com/brilliant-blog-posts-24th-march-2016/

A to Z of Blessings Challenge Reveal

This year

I will again

Write an A to Z

This year

It will be about

Blessings in my life

Every day

Through April

Except for every

Sunday

I'll post a blessing

In poetry or prayer

And use it 

All day long

A to Z of MS challenge theme reveal

https://www.mstrust.org.uk/a-z

It is with pleasure

Today, the 21st

To reveal my theme

For the month of April

Through every day

Except for the Sabbath

I'll pen a poem

About MS

I'm doing this

Both as a challenge

But more than that

For the MS Trust

So if you like

What I am writing

Then please could you

Consider donating

Every pound 

Given to the trust

Will make a different

To families like us

Blogging from A to Z Challenge 2016

You can find all the Blog Posts
with their poems and facts at
A to Z of MS

Donate to MS Trust 

HERE

Amazing! Kids Magazines Review and Competition

This week we have been reading and enjoying two magazines; Amazing and The Week Junior.

By we I clearly mean Rachel.

By reading I clearly mean Rachel reading and telling me.

By enjoying I clearly mean Rachel enjoyed them and I enjoyed listening to other publications.

In order to write the review I decided to have a few questions which I'd ask Rachel about each magazine.  Here are the questions I asked Rachel and what she thought of the magazines.

Amazing!

What is it about?
It's an educational magazine based on Romans with sections about the Romans in each double page on Art, Life Science, Sport and Games, Communication, Food Tech, Health and Careers, Literature, Geography, Languages, History, English, Maths, Poetry, Personal Development, Non-Life Science, Morals and Activities.

What did you most like?
It's easy to read but not at all boring.  I like the sections with things to make, draw and bake; and there are lots of good activities to do in the magazine.  The pictures are really interesting and funny.  I read it all in one go which means it must be good.  (And she's got her nose in it again now when I'm asking her about it which is a great sign.)

What did you not like?
There was one part which was confusing, where the poster needs to be pulled out; but once I realised it was a poster it was fine.  I think if the colours of the poster had had more differences to the pages around then it would have been more obvious to pull it out.

Is it something you would buy again?
It's interesting and it's a magazine I would get again definitely.

Would you recommend it to your friends?
I think my friends who like to read would love it.  But I think it's for kids younger than me, who are lower down primary school, because I knew most of the facts.  I'll give it to my friends who are in year 3 and see what they think of it.


What Amazing! say:
Amazing! is a monthly printed magazine that spans the National Curriculum for boys and girls aged 7+ and it’s designed to get children learning in a brand new and exciting way!  We take things that children actually like reading about such as zombies, aliens, cheesy feet etc and link these in clever and humorous ways back to the national curriculum. In this way, children get to read things of interest to them, and all along they’re learning about the things that matter – there’s nothing else quite like it on the planet!  Amazing! annual subscription is just £49 for 12 issues.



The Week Junior

What is it about?
This is all about the news, it's like a newspaper but easier to understand and aimed towards children.  It's like CBBC Newsround in paper form.  It's got lots of pictures and it's bright and colourful and easy to read.  The sections are this week's big news, home news, around the world, the big debate, people, animals and the environment, all about tax, science and technology, photos of the week, sport, book club, this week's big event, what's on, on screen, do something, how to, over to you, puzzles, that's unbelievable and quiz of the week.

What did you most like?
I really like the pictures which accompany the writing.  The section on animals and the environment is really interesting, but that's what I love to find out about.  I spent ages on "that's unbelievable" and was reading that to mum.

What did you not like?
The writing is quite small and that makes it harder to read, but then if it was larger than the magazine would be thicker,  But I'd prefer it larger.

Is it something you would buy again?
Yes I'd buy it again, I think this is a great way of getting the news and would be interesting for people in secondary school.

Would you recommend it to your friends?
I think my friends would like it and that it would be good to have in the classroom library.

What The Week Junior say:
Brought to you by The Week magazine, The Week Junior is a new current affairs magazine for children aged between 8 and 14. It's filled with fascinating stories and information, written to engage young, curious minds and encourage them to explore and understand the world around them.  From news to nature, science to geography, film to coding, The Week Junior gives children the information they need, the way they want it: colourful, immediate, exciting.  An annual subscription currently is half price, giving six issues for the price of twelve.


Try these magazines out for yourself
There are three easy ways to try these magazines out with your kids

1. Enter the competition
I have been given 10 copies of Amazing! magazine so that 10 of you can win 1 copy each.
To be in with a chance of winning one, enter using the rafflecopter below. The competition is open to UK entrants only and closes at midnight on Monday 28th March 2016. Good luck!

a Rafflecopter giveaway

2. Use the code at Amazing!
Visit Amazing! and use the code WOW10 to get 10% off subscriptions

3. Subscribe to The Week Junior
Visit The Week Junior and you get 12 copies for the price of 6.

A day in London with MS and the Family #accessday

Yesterday Mike, Rachel and I went on an adventure to London to

Billy Elliot The Musical 

at The Victoria Palace Theatre.

We had researched different routes to get there including the cost and the ease of each route.

In the end we decided that we'd let the train take the strain

and thought it would be a good way to see what support was available doing this.

I visited the Great Western Railways website

and was really impressed with the Assisted Travel section information

including information about each train station.

I have a disabled person's railcard which reduces the cost of travel and provides immediate information about my disabilities to the train operating companies.    

I decided to use the DPR assistance booking form online, 

but when I didn't get a confirmation email decided to ring GWR direct.  

I'm glad I did because the form hadn't worked - they advised to always phone.

We booked assistance at Reading train station for the 11.50am train

and were told to arrive at least 20 minutes before departure.

Never a family to be late, 

we parked in the disabled parking space at Reading train station 

and had bought our tickets by 11.10am.

We spoke to the man at the barrier and he let us through and said he'd radio for assistance.

We knew we were early and so expected to wait

but only had to wait about 5 minutes and were apologised to several times for that.

We actually found this amazing sign about the station for visually impaired.

Cool!

The guy who came to assist was friendly and energetic,

he made the whole experience relaxing and fun

and I didn't feel a burden in any way.

He saw that our train was delayed and got us to an earlier train.

This was great in theory, but that train was really busy and we were last on,

having to wait until everyone had cleared space for the ramp to be placed.

The assistance guy was brilliant and shouted for people to let us on

and offer their seats to us, but no one gave theirs up!

I had to literally ask a few people myself and one eventually gave up their seat with a tutt!

There I was, 

on a seat for a disabled person, 

with 3 other non disabled people 

(also in disabled seats)

staring at us and not moving for anything.

Nice!

When did Joe Public become so self centred and rude?

After a very uncomfortable journey;

I hadn't realised how much pain it causes to brace myself from moving or falling off a seat;

we arrived at London Paddington.

This was the bit I was worried about.

Would anyone come with a ramp?

How would we know what to do if one didn't arrive?

We needn't have worried.

The ramp was there waiting for us.

And AGAIN the only problem was the public.

They tutted and huffed as the ramp was placed and then they all used it to get off the train.

Even when the assistance guy asked them to allow me off they ignored him.

But I wasn't in a rush and we got off eventually

and it's easier onto a quieter platform.

The assistance guy apologised for the public,

this was really touching and affirming.

He asked us if we needed help getting to the taxi 

(I had stated that was our next transport route when booking assistance)

but we said we'd find it and not to worry.

http://www.visitlondon.com/traveller-information/place/288189-paddington-railway-station-london

I used to travel to London Paddington every day and knew the place like the back of my hand

and that matters when you're blind, because it means you don't feel so blind.

Sadly, although fabulously, there have been major improvements at Paddington

which meant I felt very lost and very blind.

But with Mike and Rachel by my side (mostly, Mike does like to rush ahead)

we found our way to the new taxi rank.

There were taxis waiting and no queue!  

That's never happened to me before.

The first driver was immediately out of his cab and putting down the ramp for us.

I had visited the TfL website to find out about the black cabs and accessibility

and rung a couple of black cab groups to check that the scooter would be allowed.

There were no problems at all.

The ramp wasn't too steep, was sturdy

and the folded down scooter and us 3 fitted in really comfortably.

So off we went across London in comfort.

www.visitlondon.com

I know that TfL and London Underground have done great things for accessibility

and we could have found a way across London by tube,

but I didn't feel confident enough to try that this time, maybe next time.

The taxi driver showed excellent understanding of wheelchair and scooter users

when he was deciding where to drop us off.

He was talking us through the different places close to the theatre

and their drop curbs etc during the roadworks all over the place.

He found a perfect location, jumped out and helped us and the scooter out again.

He could not have been more helpful.

We had a table booked for lunch nearby

but Mike popped into the theatre to check the arrangements for access.

The theatre reassured him that if we came back at least 10 minutes before the start time

that they would help us to our seats. 

So we headed off to the restaurant.

Mike will not like me sharing this, but.......

I had, as the planner of the day, saved a map of the theatre and restaurant to my phone

but Mike loves using the satnav on his phone.

I knew that as we stood on the pavement facing the theatre entrance we needed to go right.

But no, Mike's satnav was determined to take us left.

I knew we had 20 minutes so I gave in, which shocked him, and followed his plan.

10 minutes later he said how mad I was to book a restaurant 2 miles away.

2 miles?  I think not.

"You haven't got the sat nav on driving mode have you?"

Oh yes he had!!

We were walk-scooting round the one way system

I found it funny, he eventually found it funny.

Rachel didn't appreciate the fact that we had to retrace our steps!

Eventually, and bang on time, we arrived at Zizzi Victoria.

I had researched restaurants locally and liked the look of the layout of Zizzi.

I had rung them to book and was told to use the online system.

I told them I used a mobility scooter and they again directed me online.

So I booked online.

Can you guess what happened when we arrived?

Once we managed to negotiate the double entrance doors ...

why?  

It's impossible for wheelchair or scooter users to push one, 

get through and then pull the other on their own.

We were met with a sour sounding (and apparently looking) man

who demanded "have you reserved?".

"Yes, online."

"You can't bring THAT (scooter) in here, there's no room"

"I can't leave it outside, and it folds when we're sat"

"You should have rung and arranged an accessible table"

boom

"I did!  

And I was told to book online!"

"well there's no room to get through"

"do you talk to every disabled person like that?"

"we don't get many"

There you have it!

That's what we face all over the place.

Zizzi Victoria, looks great online, no where near so much space in real life!

But we needed food and everywhere was full,

so we didn't back down and we found a way.

I walked with my stick and Rachel's help to the nearest available table

and Mike took the scooter to a safe corner.

It felt good to have not been scared off by them,

even though we were being stared at by the staff and half the patrons.

We had a lovely meal, the food was wonderful

and the seat was surprisingly comfortable, which is very rare for people with MS.

It was 2.10pm

We were at the theatre 

There were crowds everywhere

Mike went to tell them we had arrived

Rachel waited with me

Another lovely person appeared out of the crowd

Asking what I could see and how close he should stay so I could see him.

He parted the crowds as he took us around the side to the accessible entrance.

He showed us to our seats and was really careful that I was comfortable

and then arranged for the scooter to be safely stored.

The show was spectacular

I couldn't see a huge amount

But I could follow the actor playing Billy Elliott 

when he was dancing his solos

Wow!!

At the end we thought we'd have to wait for the scooter

But as the final curtain fell for the final time

There was the same guy

With my scooter

Ready to help us leave

The most wonderful, accessible experience.

It's tempting to end on that high

but as with all great trips

you have to get home again.

By this time I was exhausted and in pain

but I didn't tell Mike and Rachel

what could they do?

It was also dark so I was pretty much completely blind.

We followed the crowds towards Victoria Station

and the concourse was heaving!

I couldn't see anything

I couldn't make out Mike

I couldn't hear his voice for all the noise

I was petrified

I pretty much shut down.

But Rachel knew just what to do.

With her hand on my shoulder

and her voice in my ear

she helped me follow Mike

through the throngs

and out to the taxi rank.

There was only one taxi there and it was a huge Mercedes black cab.

We thought that would be even better than the normal black cabs

but it wasn't set up as well as the earlier one.

It didn't have an inbuilt ramp

and I'm not sure the driver had ever used one before.

He huffed and puffed as he got it out of the boot

and it was a comedy watching him try to assemble it.

But he did

and the scooter got inside

and we got safely to Paddington station

although I had to tell him we couldn't jump out at the traffic lights!

A similar mercedes black cab

Paddington Station was bright which helped my vision that little bit

and we went straight to the first person in uniform

asking for where to go for our booked assistance.

They gave clear, simple directions

and we were greeted with smiles.

Again we were told we'd get onto an earlier train than we had booked

and I said I was concerned because we didn't get seats on the way there.

We were reassured that we'd get seats so we believed them.

The train was found

the ramp was put up

we got on

but guess what...

all the disabled seats were full of people.

I am clearly disabled, with a stick,

dark glasses on at night,

and a scooter being brought on board.

But did they give up their seats?

The GWR train layout for disabled passengers.

Well yes, and no.

One lovely young couple with a baby offered their seats

(behind the disabled ones)

but I couldn't take that from them.

Instead the young dad 

asked people in the disabled seats to move.

One guy moved immediately

and another moved making a huge fuss saying

"don't see why I have to, where will I sit?"

Two others wouldn't even make eye contact

and I thought they might have not understood English

until they started speaking to each other half way to Reading.

This journey was really painful physically

but more than that

it was painful emotionally!

Why do people think we need seats?

Why is it so difficult to see our needs?

Do they think it's fun to live like this?

Do they think it's a choice we make?

www.123rf.com

But I'm not going to focus on that.

Instead I'm going to focus on that dad.

He chatted to us through the journey

His son was adorable.

He got off at Reading as well and was really helpful.

He thanked us for being in that carriage and having a ramp

because it made life easier for them and their pram.

He wanted us to take the lift ahead of them 

but I insisted they go first.

He was an angel in human form.

He turned a really hard train trip into a pleasure.

If that was you

Thank you.

And so we were back in Reading.

We made our way to the car park

and were home by 7.30pm.

I was in bed not much later

Exhausted but euphoric.

What an amazing adventure.

There was bad experiences but many more great ones.

People, most people, care and are generous and helpful and friendly.

This post is a whole day of #TreasuredMoments 

and is linked up at

#TreasuredMoments linky.

Also linked up at
SundayKitchen
SundayStars
FabFriday