Don't want to moan but.... #ms #blind

I feel like I come here and moan
And I don't want that to be something I own
Because life is both up and down
There's no permanent frown
But when it's good I'm out on the town (or by the sea)

I think the advent wreath is a good illustration
About what I am trying to mention
For every five days or so
There's one that can go
Take a run and a jump down below

But the other four are not half bad
Although frustrating sometimes I am glad
To have those good times
Though not caught in rhyme
But I write when I'm feeling sad (or mad)

And right now
I'm mad
Because no one seems
To get it
None of it
It's so annoying
Drives me to distraction
And then the looks
Like I'm crazy
But it's not that
I can't SEE!!!
And I need help
And things have to change
Both in my head
And around the place
And no
You can't leave
Shoes
Bags
Clothes
Lego
Books
Anything on the floor
Or stairs!
The stairs?
I can't see
Did I mention it?
Perhaps I didn't make it clear
But I'm being mean
Because you forget
And I need to remember that
And I'll try
If you will
Will you?
Family counselling anyone?

Rest and recuperation

It's not in my nature
To rest
It's boring and causes me
Unrest
But this Christmas season
I've discovered the reason
Gaining energy and feel much less stressed

Like flowers I needed
To wait
For the moment of bloom
To be great
Rest and recuperation
Is essential medication
I must trust that I will not be late

Hearing meets poetry #haiku

Last night as I woke for the umpteenth time* I was amazed by the sound of the sea.  It was deep and resonating and it stirred poetry within me.  I tried to get back to sleep but the words needed to be written down; and they have become a number of haiku poems.

You can find them on LLM Calling here if you'd like to read them. 

I've noticed how much more acute my hearing seems, even in my not so great ear. I don't think it's a physical thing, I'm sure it's the brain using whatever sense it can harness now my sight is so depleted.  I've heard about it many times, but it's truly extraordinary to live through.  I also feel sound more than I've ever noticed before, not just bass notes but all sorts of sound and it often creates images in my mind.  I am interested to explore how I can share these images other than through words, I'll keep you informed of course.

* this is the new normal to wake with pain every time I move and I've always moved a lot in my sleep

Family games reviewed #christmas #blind #sightloss

This Christmas has been very different to any in the past, thanks to MS.  Of course different does not necessarily mean worse and I've really enjoyed time with family who have understood and accommodated my pain, fatigue and inability to see stuff.

Christmas in our family is a time for games, particularly board games; and these are problematic when you can't see very well.  But we've had a go and here's how they've faired.

Scrabble
You won't be surprised to hear that there's no joy playing Scrabble when you need to use magnifiers to read the tiles.  It's hard enough reading your own tiles without trying to read what's on the board.  I tried using my phone to take photos of the board to help me but it took so much longer that everyone else got bored.  Unless anyone has any cunning solutions I think my scrabble days are behind me.  And yes, I know I could play in a pair but whispering doesn't work that well.

Chess
The great thing about chess, as I discovered when I taught Rachel to play when she was about 4 or 5, is that the pieces move in the direction of their shape.  This means that I can feel the pieces to identify them if I can't easily tell what they are.  The second great thing about our main chess set is that it's large and the pieces are clearly different from each other.  And of course the board is black and white which is the best possible contrast for me to see.  Chess remains a very playable game, if only for two people at a time.

Sussed
I bought Rachel the card game 'sussed' in September when I started Christmas shopping and I can confirm it was a really good choice.  We played it with Mike's parents and had a very funny hour guessing what we each thought our favourite or worst or craziest things to do, watch or play are.  It's good to know that i know Rachel and Mike really well and they're not bad at knowing me, if a bit dodgy on each other. But the funniest was seeing what Mike's parents thought Mike might answer, he's not the boy they still see him as.  There are challenges playing 'sussed' with poor vision but with a little bit of help and a magnifier I made it work and it was well worth it.

Monopoly
What would Christmas be without family falling outs over house building in monopoly?  This year Rachel's cousins pleaded with us to play with them and thanks to the kids throwing my dice, moving my piece (the Scotty dog of course) and reading the names of the streets I merrily joined in.  I found myself a lot less worried by the outcome and enjoyed playing more than usual, now that's a turn up for the books.

Pictionary
I love games and I love drawing, despite not being great at either; but sadly sight loss made pictionary impossible to play.  And my crazy idea of trying actions or modelling were equally useless. However a friend gave us "hum that tune" and I can't wait to try that - watch this space for how that works because Mike and his family are not the right people to play humming or music identifying with.

Trivial Pursuit
The brain still works so what could possibly stand in my way of playing trivial pursuit?  Oh yes, my lack of general knowledge about every subject I'm quizzed on (and yet my freaky knowledge of everyone else's answers).  I can confirm I can still play, but it's never going to be a game I win and so it won't be top of my list.  Me, competitive? No!

Card Games
The aforementioned friend and another friend obviously had the same great idea for Christmas and I love them both for it.  Large print playing cards. Awesome!  We always play card games and my sight won't stop us now. 

The MS black hole #blind #ms

The MS black hole
It's multi faceted
It feels like a spiral
Have I collided?

First there's the pain
Coming from every angle
Then there's fatigue
Making me fragile

The vision loss
Is a literal hole
I now have the eyes
Of an elderly mole

The endless appointments
Are a spinning mess
Yet we're not moving forward
Is it some kind of test?

And as for options
I've not seen any
All because it's
A postcode lottery

The sensations are confusing
Coming thick and fast
Or replaced with numbness
That's the scariest part

My life is going
And I don't feel in control
But I'm learning through it
To hold onto the pole

I'll go where it goes
This MS black hole
There's light at the end
I know that in my soul

This is how my head pain looks #ms #pain

I was trying to distract myself from the pain this morning and ended up creating this image.  I wasn't sure whether it was anything on particular until this evening when I looked at it again and bam... That's how the pain in my head looks.

There's pins and needles and numbness and pinching on my face.

There are shooting feelings all around my head.

My throat and ears and nose and pounding.

My eyes feel like hot pokers are having fun at the back of them.

And the tinnitus is just a constant fixture.

It's not great but most of the time I can cope, until I run out of spoons.  Just call my lion girl (that's what Rachel thinks this picture is).

Happy Christmas #ms

Happy Christmas friends
This year we're not sending cards
Instead we're donating the money to
Give to the MS society

A tale of two scooters #ms

This is a tale of two scooters
Mobility scooters that is
They gave me my independence
And sanity as a second gift

When I lost my mobility
Church friends gave me #1
It got me up to sports day
And other sources of fun

It really was a god send
My friends don't know how much
But when I could no longer drive
It couldn't get on the bus

So we researched other options
And a foldable model we chose
It's light and very agile
And on public transport goes

To see just what I mean
Look at images 3 and 4
In two seconds flat or so
It's flat packed by the door

But then one day the new one
Showed it's little flaw
The fuses are hidden inside
Design is a little poor

But that's OK because senior
Was waiting patiently
And stepped up to the task
When junior was being pesky

So that's the tale of two scooters
One reliable, other frisky
Their great as a tag team
Giving me mobility

And if you're looking at the image
And wondering about number 2
That's a little dream I have
Well you would, wouldn't you?

Getting right on my nerve #ms #pain

This MS pain
Is getting right on my nerve
Right on my nerve
Right on my nerve
This MS pain
Is getting right on my nerve
It takes my spoons away

Today I've had to
Rest rest rest
Rest rest rest
Rest rest rest
Today I've had to
Rest rest rest
I'm really bored with it

Nothing about MS
Is even slightly funny
Even slightly funny
Even slightly funny
Nothing about MS
Is even slightly funny
But I'll keep smiling anyhow

This cuddly nerve
Needs to stop smiling
Stop smiling
Stop smiling
This cuddly nerve
Needs to stop smiling
Or I'll start to demyelinate it

That's the humour
I tend towards now
Tend towards now
Tend towards now
That's the humour
I tend towards now
As I tend towards a wall

Tiny scooter breakdown, massive recovery operation

The fuse blew
Lights went out
Scooter broke down
But I didn't shout

A call to insurance
They called a truck
But when it turned up
It was a comedy act

A flat bed trailer
Fit for a large car
With my ickle scooter
Looked quite bizarre

But it did the job
It got us home
Fuse was replaced
So again we could roam

*these images show
I'm not in this alone

MS Calling caption competition

This is a scene from my day
What would you say?
All suggestions welcome
It's a caption competition

Another year I survived #ms #blind #poetry #god #love

What a year it's been
This year called forty
It started with a wheeze
And then tried to kill me

I plastered on a smile
Determined to be positive
But behind the scenes
Sometimes it had to give

What a crazy year it was
With MS a relief
And then sight was stolen
By demyelination thief

But I've made it through
Somehow I've survived
Hope 41 will be better
I'm setting out to thrive

Again from the start

I'll put my faith in prayer

God is always with me

I'm glad to have him near

On the sofa #ms #fatigue #relapse

Yesterday I was on the buses
Now I'm all worn out
I used too many spoons I think
Going out and about

Today I'm on the sofa resting
Resting all day long
Praying the pain, weakness and spasms
Go back to where they're from

Xxxx

I can't find the words in poetry to go any further in this post so prose will now take over.

I woke up many times in the night with a stabbing burning sensation just below my left elbow.  I've never felt anything like it before, it was like a hot poker was against my skin.  It was still there in the morning accompanied by shakey left arm and pins and needles all over, including in my right arm which is new.

We decided to continue with our plans to go out for breakfast but within an hour I was dragging my foot and my balance had gone and I couldn't use my left arm at all. For the first time I had to ask Mike to cut up my food, a brand new low.

And then it got worse.

We were talking about car number plates (the things 10 year olds want to know) and suddenly I couldn't talk. Not at all.  I couldn't figure out how to get the words out of my head.  I could move my mouth and think but I couldn't actually talk.  And then I couldn't think properly, it was like a dream, or a nightmare.

It only lasted a few minutes and then I was back and could see how worried Mike and Rachel were.  So I pretended I'd been playing around, and I hope Rachel believed me, but Mike knew.

We came home as quickly as we could and I laid down on the sofa and that's where I've been ever since.  Resting.  And improving.  

Luckily Rachel had a street dance rehearsal most of the day so I could ring NHS 111 without her hearing. But they just told me to call my MS nurse if I have one (I should be so lucky) or wait to speak to my GP on Monday.

I'm hoping all this rest will help and ensure I've got as full a set of spoons for my birthday tomorrow as possible, only time will tell.

Xxxx

It's scary this MS business
I try make it light
To find the humour
But it's really scary
And we're in the dark
Alone, in the dark
Except where not
Thanks to God
And His people
That's you I'm talking about
Thank you xx

On the buses @reading_buses @wokinghamBC #ms #blind #disability

I've had my disabled bus pass for a few weeks now but hadn't managed to try it out.  There were two reasons for this:
1. Lack of confidence around my mobility and worry that my scooter would be a problem on the bus 
2. Fear that my vision loss would make it hard to find a bus and find a bus stop

Then yesterday I found out that I'm entitled to a companion bus pass. This allows someone to travel with me for free to help me with my journey. 

When I rang Wokingham council they were brilliant and arranged for my enhanced bus pass to be with me next week.  They also told me that every bus driver is there to support anyone with disabilities on their journey and I should try it out.

So that's what I did this morning!

I checked the weather forecast, an essential part of my morning routine these days.  I got out my scooter and set off the five minute scoot to the bus stop. 

Of course a bus was just pulling away, but the claret bus is a great route provided by reading buses and another arrived within 10 minutes.  And I had had a lovely chat with a lady at the bus stop whilst I was waiting.

As the bus driver dropped the ramp down, I collapsed my scooter, which completely amazed the driver.  He then helpfully took my bus pass to scan whilst I walked the scooter onto the bus and found a seat.

Easy peasy, lemon squeezy.

When the driver brought my bus pass back to me, I asked him if he would tell me when we were at asda because I can't see very well.  He was happy to do that. 

Five minutes of bus travel later three fellow bus passengers and the driver all told me this was my stop.  I let everyone else get off and then walked my scooter to the door where the driver had put down the ramp.  Off I got, unfolded the scooter and followed everyone else across the crossing and into asda.

Success!

This is a huge deal.
It's the first time I've gone to the supermarket on my own in almost two years! 
I'll let that sink in.

After an hour getting a few bits and bobs, just because I could, I set off to find the bus stop for the way home. That was sprightly more precarious because I had to cross two access roads (to the delivery zone at asda and to the leisure centre) and because I can't see cars coming that was a bit scary, but clearly I made it.

Again I'd just missed a bus but another one came along in five minutes or so.  Again it was an easy experience and this bus driver was especially interested in my scooter, she couldn't believe what she was seeing.  The driver told me where to get off for my scoot home and I was home five minutes or so later. 

I can't tell you how fantastic this whole experience was.
It's increased my confidence.
It's widened my world that but further.
It's reminded me how friendly strangers are to each other.

I'm exhausted now though so I'm off for a couple of hour's sleep before Rachel gets home.

Eye eye #haiku #poetry #blind

Eye see nothing new
Minds eye sees more than ever
I am more than eye

Excited about cities unlocked project @futurecitiescat #blind

Have you heard of the cities unlocked project?

"Cities Unlocked draws on the expertise of Future Cities Catapult, Guide Dogs and Microsoft. We've come to understand the mobility challenges faced by people with sight loss in our cities. In response we've developed a new soundscape technology and highlighted further opportunities for innovation that could unlock cities for everyone."

I've been amazed how scary the world is now I can't see it very well.  Mike in particular has been shocked at how hesitant I am to go new places because I just can't figure out what's going on; even the school fair was a terrifying experience because there was too much noise and people and obstacles everywhere.

The demonstrator page on the project gives me hope that I will learn how to go new places and be supported by technology to do it independently again.

Weekend on the go part two #ms #blind #Christmas #poetry

On the first weekend of December
We had a fantastic time
And I tried not to lose any spoons

On the first weekend of December
We had a fantastic time
With lots of physical challenges
And I tried not to lose any spoons

On the first weekend of December
We had a fantastic time
With loads of lovely friends
And lots of physical challenges
And I tried not to lose any spoons

On the first weekend of December
We had a fantastic time
With 36 nativity sets
And loads of lovely friends
And lots of physical challenges
And I tried not to lose any spoons

On the first weekend of December
We had a fantastic time
Although I couldn't see
With 36 nativity sets
And loads of lovely friends
And lots of physical challenges
And I tried not to lose any spoons

On the first weekend of December
We had a fantastic time
With loads of kids
Although I couldn't see
And 36 nativity sets
And loads of lovely friends
And lots of physical challenges
And I tried not to lose any spoons

On the first weekend of December
We had a fantastic time
With a family meal out
And loads of kids
Although I couldn't see
And 36 nativity sets
And loads of lovely friends
And lots of physical challenges
And I tried not to lose any spoons

On the first weekend of December
We had a fantastic time
With inspirational musicians
And a family meal out
And loads of kids
Although I couldn't see
And 36 nativity sets
And loads of lovely friends
And lots of physical challenges
And I tried not to lose any spoons

On the first weekend of December
We had a fantastic time
With 50 Christingles
And inspirational musicians
And a family meal out
And loads of kids
Although I couldn't see
And 36 nativity sets
And loads of lovely friends
And lots of physical challenges
And I tried not to lose any spoons

On the first weekend of December
We had a fantastic time
With 2000 motorbikes
And 50 Christingles
And inspirational musicians
And a family meal out
And loads of kids
Although I couldn't see
And 36 nativity sets
And loads of lovely friends
And lots of physical challenges
And I tried not to lose any spoons

On the first weekend of December
We had a fantastic time
With one Christmas tree
And 2000 motorbikes
And 50 Christingles
And inspirational musicians
And a family meal out
And loads of kids
Although I couldn't see
And 36 nativity sets
And loads of lovely friends
And lots of physical challenges
And I tried not to lose any spoons

But I failed
And it was worth it!

If you'd like to know more about what we actually did today then I wrote another poem inspired by the twelve days of Christmas at LLM calling http://llmcalling.blogspot.co.uk/2015/12/messy-christingle-meets-noisy-santa-run.html

Weekend on the go part one #ms #Christmas #blind #church

This weekend I've not let anything MS or vision stop me, although it wouldn't have been possible without Mike's help.
Here are a few words about Saturday....

Awesome day all round
Nativity sets of all sorts
Carol Singing with friends
Chats around snowmen
Christmas fair scoot round
School mums catch up
Dinner with family
Double bass concert
Now off to bed
Night all
Zzzzz

http://llmcalling.blogspot.co.uk/2015/12/awesome-day-all-round-church-school.html

No letters at all #blind #opticneuritis #ms #poetry

None to be seen
no letters at all
it was a shock
for them most of all
and then in the eye
there clear as day
optic nerve damage
they don't know what to say

A break #pip #hospital #ms #blind

I'm putting it all on hold
Until the new year
No forms
No tests
No stress
Just advent
Then Christmas
And a rest
Then I'll deal with it
But not now
Now it's festive

* what crazy sort of cookies would these be? Thanks Facebook for rubbing salt into the wounds with your targeted advertising

What a day of ups and downs #opticneuritis #ms #sight

Amazing morning sharing stories of our trip to Zambia with year 6 for world aids day.

Exhausting three hour afternoon having loads of eye tests and hearing lots of despondent things.

Hour with a lovely vision counsellor who is going to get us practical help.

Hour with Rachel laughing and joking before cubs.

Couple of hours with Mike talking anything but illness.

Visor low vision magnifier #review #s5 #android @seevisor

I know that it's amazing what you can find on Twitter but I didn't expect to find an answer to my reading problems. 

I can't tell you how I found @seevisor or why I followed them but I'm really glad I did. They have made a simple yet effective app for using my S5 as a magnifier.  

Visor - low vision.  

And yes, I've already reviewed other magnifiers, but this goes four steps further:
1. It has really good auto focus
2. You can switch on a light to make the image brighter
3. It offers a number of different colour options for reading.  Black on white, white on black, blue on yellow or yellow on blue.
4. There are four levels of zoom to meet anyones needs

And #3 is where the magic happens.  When I put the page into white text on a black background I can see so much better. And when I zoom (#4) into this I can actually read. 

Whoa!

Now all I need is a way of stopping my hands from shaking, anyone got any ideas on that one?
Perhaps a mini tripod?

Time to Scoot? #ms #mobility #poetry

The rain has stopped
The sky looks clear
But how soon will clouds
Be somewhere near

I need to go
To the shop
But mobility scooter
In rain might stop

I need 20 minutes
Possibly more
To get there and back
Without a tour

In a car
I'd never worry
A little rain
Wouldn't make me sorry

But without the metal
Covering me
I'll be a drowned rat
Coz I can't flee

So should I go
Or should I stay
I don't appreciate
This rainy day

Are you angry at God? #blind #faith

An increasing number of people have been asking me if I'm angry with God about my health problems and so I thought I would share how I feel about God, my faith and my health.

I have been lucky enough to have had a close and real relationship with God for most of my life.  We drifted a bit during my early twenties, but like good friends when we got back in touch it was like we had never been apart.  I have doubted, that's normal, in fact that's healthy, but I have always kept my eyes wide open and without fail I have seen God in the world, in people and in situations and that has kept my faith alive and real.

So how do I feel about God now as I am confronted day in and day out by ill health.
The answer is simple; I feel comforted and held and loved

I am not angry at God.
He didn't cause this to happen.
I am thankful to God that He is with me through this.
I am grateful to God that He is healing me emotionally so I can cope.
I am relying on God to keep me going and keep me safe when I don't feel it.
I am resting in God's love.
I am not angry.
I am grateful.

What I can see: keyboard #touchtype #blind #ms #photo

Good job I can touch type!

I can't see the dust! #blind #ms #thanksgiving

This I will celebrate
On thanksgiving day
I can't see the dust
That keeps worry at bay
Not that I minded
Ever before
But now I don't care if
There's mess on the floor*

* unless I trip over it if course

What I can see: when crossing the road #blind #ms #photo

This photo has shocked Mike today; he hadn't realised how narrow my field of vision is until he could see it mapped onto a road crossing. 

We're really lucky where we live; I can get to a bus stop and the doctors without crossing a road and can get to the local shops using a light and sound crossing.  But I have to cross three roads without any formal crossings to get to Rachel's school and four to get to church; that is eight points of high risk.

What I can see: when watching TV #ms #blind #photo

This is me
In front of the TV
Is this the image
That you can see?

It's not for me!

This is closer
All nicely blurred
But it's not quite right
Isn't that absurd

Because I forgot
All the edges have gone
So this closest to
My TV for me at home

What I can see: a normal suburban street #ms #blind #photo

Is this what you see when you walk down a normal suburban street in the sunshine?
I don't think I've seen a street like this for at least 20 years, I've been really light sensitive since I lost the sight in my left eye the first time; but apparently this is what you've all been seeing.

And this is how blurred the street view is to me, not taking into account light sensitivity

And here is how it is once my peripheral vision loss is also taken into account

No wonder I'm not allowed to drive any more.

What I can see: crowds #ms #blind #photo

This is the second in the series of photos to illustrate "What I can see".  This time I've found a photo of a crowd of people walking along the street.  I have never liked crowds, which is one of the reasons I'm not overly fond of window shopping on a Saturday morning, but this image fills me with a sinking feeling more than ever.

And once I have amended the image to show you what I can really see it might as well be name "panic attack in a street" because that's what I'm likely to have.

and if the light is bright or I'm tired then what I can actually see reduces even further and makes life almost impossible.

and I won't even mention how much harder it is when I'm on my mobility scotter and so everyone is towering over me.  whoa.

What I can see: People #blind #ms #photo

I have been trying to describe to people what I can see since my eye sight has deteriorated and it's not at all easy to put into words.  So, inspired by the images Ann Memmott creates to explain her visual autism, I have been playing with some photos to try and show what I can see at the moment.  It hasn't been an easy thing to make these images because .... I can't see them very well ..... but with Rachel's help and the wonders of photo apps and a lot of zooming in and out I think we've got as close as is possible.  I am naming these posts "what I can see" and hope they'll be useful for my friends, colleagues, church, family and other people who are experiencing sight loss or would like to know what it's like.

The first photo I am posting is of my gorgeous Rachel.  One of the hardest things to deal with emotionally is not being able to see her eyes or freckles properly in real life; but thanks to my phone and the possibility to zoom in on photos I can still marvel at her beauty.

So, this is what the photo looks like, and what I used to see until about a month ago.

And here's the photo, zoomed in and blurred to the level of sight I have when I'm this close to her.

And then here's the same photo as I actually see it, thanks to the loss of my peripheral vision.

I'm Grieving #ms #blind #grief

I'm grieving.
No ones died
But I'm grieving
I'm grieving my loss of sight
And my loss of independence
And my loss of control
Its grief
And I've been in shock
Happily in shock for a month
But things have changed
Via a few hours in anger
(About PiP)
I'm now overwhelmingly sad
I'm grieving with tears
As people expect grief to look
And it's horrid
And it's real

I'm grieving
No ones died
But I'm grieving
I'm grieving my loss of sight

The image attached to this post is the most well known cycle of grief as defined by Kubler-Ross.  I have issues with the way the image journeys because grief doesn't normally follow any sort of set route, it is much more chaotic; but at least it shows phases which people experience whilst they're grieving.

Can't see that

I pick up a letter
Can't make it out
Find my magnifier
Still can't see that

I go to the fridge
Check the label
Is it expired?
I can't see that

Pour my cereal
Mostly in the bowl
Crunch under foot
Can't see that

Turn on the TV
Try to find strictly
Stupid schedule
I can't see that

Rachel finds it
We settle down to watch
Dresses are beautiful
But I can't see that

Hamster needs feeding
Food into bowl
"You've missed it mum
Can't you see that?"

Put on some washing
Try to set the dial
And yes you've guessed it
I can't see that

Letter home from school
Needs my signature
Rachel guides my hand
Coz I can't see that

Make notes on paper
Try to read them back
Photo them and zoom
Otherwise can't see that

Realise I've ordered
National geographic
Will be giving that away
Won't see that

These are just some ways
Life is really tricky
You'd be amazed how often
I say "can't see that"