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"

Stuck in PiP hell!

After 7 months going through the personal independence payment application and assessment process (previously disability living allowance) they've decided my situation has changed too much to continue with the existing application. Now I'm required to start the whole process again and be assessed again and wait even more. 

How is this an acceptable system?  All those pages have to be filled in again stating how awful my mobility, pain and sight is, it's depressing enough without having to write it all down again.  And since my sight loss means I can't see the forms any more I have to have someone do it for me.

All I want is support to be able to live as fill a life as possible from the government that we pay our taxes to. Is it really too much to ask?

Good job I'm a really stubborn woman who won't let this beat me.  Watch out PiP I'm coming to get you and then I'm coming to change the system because it's cruel.

(I will share more about how I've found the whole PiP process in the future but I don't have the energy right now.)

Forms forms forms

You can't walk and need assistance getting about
Complete this form

You can't see and would like vision support
Complete this form

You're depressed and need help
Complete this form

You need a blue parking badge
Complete this form

You are told you can travel at reduced cost on public transport
Complete this form
And this form

You want to take a mobility scooter on public transport
Complete this form
For every bus operator
And every train operator

You need to be registered partially sighted
Complete your section of this form

Now you need to be registered as severely sight impaired
Complete your section of the same form for a second time

You need financial support
Ring us
Complete a form
Complete another form
Get written proof from everyone
Wait wait and wait some more
Then....
Complete this form

My life has never had so many forms in it; good job they don't freak Mike or I out at all.  And at least we're doing our bit keeping the Royal Mail in business.

Who stole my spoons?

I'm sure I counted right
I had ten spoons this morning
I used a couple first thing
Then two more as day continued
But then mid afternoon
I couldn't keep from snoring
And the shakes had escalated
And the head was thumping loud
And I couldn't get off the sofa
No matter what I tried

I did the usual things
With lots of help from Rachel
A big glass of water
And a crunchy apple
But still I couldn't walk
My balance gone askew
And then the light switched on
I knew someone stole my spoons

I want to know
Was it you?
Don't worry
I'm only joking

I know who stole my spoons
It was me and lack of routine
I missed my lunch
And cake for brunch
Didn't sustain my energy
That's what brought me to my knees
So now I'm off to bed
Choir songs I'll listen to instead

Have badge. Can park

If only I could park
Closer to the shop
I could get inside
Without worry I might drop

That was the dream
Everywhere we'd go
So we filled in forms
And evidence to show

After all these months
A badge has now arrived
It has magic properties
For everywhere we drive

Now I have good access
Anywhere we fancy
We can stop and explore
As we can park conveniently

Now we can park
In those disabled spots
I can finally
Get into all the shops

So if you fancy going
Anywhere for a browse
I'd love to come with you*
My blue badge now allows

*if my scooter fits into your car :)

Playground brawl politics #paris #peace #politics

Let me be clear at the outset; I am not condoning the attacks in Paris on Friday; or those in Beirut or Baghdad or Syria or Libya or Kenya or anywhere else!

But how governments respond to these attacks should not be the politics of playground fighting. One attack should not be followed by an immediate attack in retaliation!  Just as one punch in a playground should not be followed by an immediate punch in retaliation. 

We are desperately trying to teach our children to breathe and make good decisions when in conflict situations; and yet they see governments model the exact opposite.  And worse, our children see their governments attack the friends of their attackers and believe this is acceptable. This is not appropriate.  This will not lead to a world of peace for our children.

Our governments should be reflecting and mourning and and planning sensible ways of protecting themselves against the extremely small number of terrorists rather than attacking communities where innocent families become collateral damage.

The actions of France bombing Syria in retaliation will only breed hate; and hate can not ever lead to peace.

I understand the anger, fear and hatred; but hate should not breed more hate. 

Attack should not lead to attacks. 

The death of innocents should not result in the death of yet more innocents. 

In the words of Martin Luther King Jr
"Darkness cannot drive out darkness;
only light can do that.
Hate cannot drive out hate;
only love can do that.
Hate multiplies hate,
violence multiplies violence,
and toughness multiplies toughness
in a descending spiral of destruction....
The chain reaction of evil --
hate begetting hate,
wars producing more wars --
must be broken,
or we shall be plunged
into the dark abyss of annihilation."

Dr. Martin Luther King, Jr.
Strength To Love, 1963

Father of peace
I beg you today to be on the hearts of all those filled with hatred. Bring light into their darkness. Bring patience into their panic. Bring your love into the situations and let peace be the focus.
Amen.

Two years; Twenty metres

It's been two years since I walked anywhere without pain.  Two years since I walked without weakness.  Two years since I walked without pain. Two years since I walked without fear. 

Two years since I walked more than 20m at a time.  Two years since I didn't have to worry about where the next seat was.  Two years since I wasn't scared that I'd fall over when I walked. Two years since I went anywhere without worrying "what if?".

Two years of concentrating on every breath so I didn't panic or pass out from pain.  Two years since I walked into the playground without worrying about needing the toilet.  Two years since I felt my age.

Two years without shops.  Two years without freedom. Two years without just wondering around. Two years without a walk in the woods. Two years of a smaller life. Two years trapped.

It's been two years of pain, inside and out, both dull constant and sharp occasional; it's both and neither and too complicated to try to describe.  It's pain of the bones and joints, muscles and tendons, brain and heart, eyes and head.

It's hard for anyone to understand if they haven't lived through something like this.  It hasn't happened because I'm lazy, although I think you all think that. It hasn't happened because I'm overweight, although I know that doesn't help.  It hasn't happened because I've given up, although sometimes I start to question myself. 

It's taken two years for anyone to really take it seriously; and only because another symptom which couldn't be ignored came about.  But that's all in the past because now the pain is being accepted and treated I can finally start to deal with it. 

I doubt I'll be walking much further than 20m any time soon; but at least it won't consume my every waking moment.  I can move on from the fear of walking and start living; one step at a time on my wobbly legs.

Have scooter, Will scoot

Last weekend was our girls weekend away and my scooter was the 11th member of our group.  It allowed me to go shopping for the first time in 2 years and have fun out and about with my friends.  It was the first proper use my folding scooter had had and I'm so glad these girls were the ones to help and encourage me because they just took it in their stride.

This photo sums the weekend up for me and I'm keeping it on hand to remind me why I got the scooter - to live each day the best I can!

Church Vision #msm #ms

The last two days have been brought to you by ...
The words Church and Vision. 
And the letters M and S. 

Let me explain.

Yesterday was the second Thames Valley MSM (Mission Shaped Ministry) day at CMS Oxford.  We were thinking about the mission of God, missional values and the Vision we have for the Church in the future and our role in that.  Despite not having enough vision to read the slides or handouts the day was inspiring and set off all sorts of new ideas in my head.  I came home clear that I'm called to be part of many others bringing forth God's Vision for the Church and the World of all encompassing love and acceptance.

Then today I was with the teenagers at church and we were thinking about the attacks in Paris and Beirut and Baghdad and about how we need to be bold in our faith.  I was challenged in our time of prayer to be bold in my faith in God to heal; to heal my vision, heal the injured, heal the grieving, heal the world.   And for the first time, encouraged by one of our newer church members, I prayed for specific healing of my vision, trusting that God can do that.

Throughout the morning in Church today it was clear how little vision I have thanks to MS.
- I couldn't tell where the side aisle was and so had to go down the main aisle instead.
- I couldn't see space at the dais but, without realising the blessing they were, someone moved to let me in to receive.
- I couldn't see the cup properly and was worried I'd spill the wine, but the server was another blessing and made sure it was all OK.
- Then when I'd received I turned around and could not figure out where to go at all; I just couldn't see seats or even the aisle.  But I could see the kids at the front so I went towards them and sat next to them.
- As the hymn was announced I realised I couldn't see the hymn board and then quickly realised I couldn't see the hymn book. But it was "shine Jesus shine" and I know every word to that so it didn't matter.

There I was, in the Church I know and love and minister in; yet due to my vision loss I could have felt lost and separate from everyone else.  But I didn't and I wasn't; because people care and l wasn't alone and I wasn't afraid.  I was supported, encouraged and prayed for.  

This weekend I have been energised by the vision and practice of MSM in our church.  We ARE a mission shaped church with a vision to welcome, love and support each other and our community.  Although I have been affected by MS this weekend, I have not been depleted or defeated by it; and I won't be.

This post is also online at my side blog MS Calling where I've recently started blogging.

Church Vision #msm #ms

The last two days have been brought to you by ...
The words Church and Vision. 
And the letters M and S. 

Let me explain.

Yesterday was the second Thames Valley MSM (Mission Shaped Ministry) day at CMS Oxford.  We were thinking about the mission of God, missional values and the Vision we have for the Church in the future and our role in that.  Despite not having enough vision to read the slides or handouts the day was inspiring and set off all sorts of new ideas in my head.  I came home clear that I'm called to be part of many others bringing forth God's Vision for the Church and the World of all encompassing love and acceptance.

Then today I was with the teenagers at church and we were thinking about the attacks in Paris and Beirut and Baghdad and about how we need to be bold in our faith.  I was challenged in our time of prayer to be bold in my faith in God to heal; to heal my vision, heal the injured, heal the grieving, heal the world.   And for the first time, encouraged by one of our newer church members, I prayed for specific healing of my vision, trusting that God can do that.

Throughout the morning in Church today it was clear how little vision I have thanks to MS.
- I couldn't tell where the side aisle was and so had to go down the main aisle instead.
- I couldn't see space at the dais but, without realising the blessing they were, someone moved to let me in to receive.
- I couldn't see the cup properly and was worried I'd spill the wine, but the server was another blessing and made sure it was all OK.
- Then when I'd received I turned around and could not figure out where to go at all; I just couldn't see seats or even the aisle.  But I could see the kids at the front so I went towards them and sat next to them.
- As the hymn was announced I realised I couldn't see the hymn board and then quickly realised I couldn't see the hymn book. But it was "shine Jesus shine" and I know every word to that so it didn't matter.

There I was, in the Church I know and love and minister in; yet due to my vision loss I could have felt lost and separate from everyone else.  But I didn't and I wasn't; because people care and l wasn't alone and I wasn't afraid.  I was supported, encouraged and prayed for.  

This weekend I have been energised by the vision and practice of MSM in our church.  We ARE a mission shaped church with a vision to welcome, love and support each other and our community.  Although I have been affected by MS this weekend, I have not been depleted or defeated by it; and I won't be.

This post is also online at my main blog LLM Calling where I've been blogging for 8 years about all things motherhood, ministry, mental health and more.

Digital Magnifiers on S5 Reviewed

I was speaking to a friend about magnifiers tonight, after feeling really frustrated trying to read printed materials.  She mentioned that she'd seen a magnifier on a shop but thought it might not be strong enough.  It kicked me into action.

I decided to do a little research online and found all sorts of amazing magnifiers for all sorts of exorbitant prices.  £60 for a gadget with 3x zoom; I don't think so.  And then I remembered; we live in a mobile age, I bet there are apps for magnification which would work as well as these gadgets. And surprise, surprise, there are.

I have downloaded eight magnification apps onto my Samsung s5 this evening. Four I deleted almost immediately, they're not even worth mentioning; and four I tested pretty extensively, rated on the play store and will review below. I don't want to give too much away, but it's safe to say that my phone is now a magnifier.

Magnifier by mmapps mobile
This was the first app I downloaded. It was rated well (4.3) and had over a million downloads, normally a good sign.  It looked really basic as I was starting it up and I didn't have great expectations for it, but I was wrong.  It has a large area of view with simple use and the controls came naturally.  I used it to read letters on white, red and green and it coped really well.  It uses the phones light when it needs it and this can be manually overridden if needed.  I even used it to read the words on a plastic bag at the other side of the room.  It was really exciting, in a way you won't understand unless you've spent a couple of weeks unable to read anything you used to be able to read.  I rated this app 5/5.

Magnifier 30x zoom by George Agbalyan
I was intrigued by the idea that an app could effectively zoom up to 30x.  I didn't think it would be possible and expected it to fail in every respect. I was wrong.  It really works and although it clearly couldn't zoom 30x when held by an instead hand over a letter, it brought the other end of my room right into my lap. The app is less user friendly than the first app, but then it had a lot more on offer.  I was impressed and ready to rate it 5/5 when I decided to check it out just one more time; and that was it's downfall.  I had to wait for a 30 second video to finish playing.  Half a minute; it doesn't sound like a lot until you have to sit around just to read a letter or a note at a meeting, then it's an endless wait.  This was the nail in the apps coffin for me, RIP 30x zoom.

My Reading Eyes free by myworkingapp.com
This app caught my attention because the image is an eye; I'm an easy sell.  When I read the information I was sure this would be the best app for me; it had been made to help the developers friend who was living with vision loss.  From the opening of the app it is clear how much work has gone into it and the passion behind the development.  It has great features and it works well.  But there's one big flaw; the size of the screen showing the magnified object is restricted to about 2/3rds of my phone screen.  Of course if I had a tablet with a back light I could use that and barely notice the smaller proportion of screen usage; but on my S5 it is too restrictive.  I've left this in the rating 4/5 and hope the developer might work on this aspect, but until then it isn't right for me.

And so to my final app review.
Magnifying Glass + Flashlight by RV AppStudios
I decided to try this app because it rated higher than most of the others available, 4.3/5.  I didn't hold out a lot of hope, something about it's name lowered my expectations.  I was wrong.  This app is really good, it has clear controls and just felt really obvious to me.  It reads clearly on all sorts of paper colours and distances and has a good zoom which can be easily adjusted.  There's honestly not a lot between this and the first app I reviewed, but this will be the one I'm keeping on my S5 for use until I find anything better. Mind you it might be so good that I don't need to look any further.  I rated it 5/5.

Again tonight I am so thankful that I'm living in this technological age. I have a kindle which zooms and can read to me. I have a tablet and a smart phone which have screen zoom, enlarged text in all apps and text to speech software and now even magnifiers.  Thankyou software and hardware developers, you are making such a difference to my life.

Photos as visual help

Yesterday we had some crazy weather, and being British I was more interested in it than I would otherwise be.  I was in our conservatory when suddenly it went dark and there was hail hammering down on the roof. The next minute it was bright sunshine again. And then dark and rain. 

I could tell that it was dark on one side of the conservatory and light on the other but I couldn't really see what was happening in the sky. So I took a photo hoping I could zoom in and see the transition which I was sure would be spectacular.  Imagine my surprise when one of the photos I took was this beautiful image. What a rainbow.

I'm not sure how I'd be coping right now without technology; I can zoom into my phone and my tablet and my laptop to read and write and keep some normality. And now I know I can use my camera on my phone to help me as well; it even works on letters although they're rarely as beautiful.

As a bat

In the car
Can't see far
Everything is blurred

I try to see
All double to me
Like it's all been stirred

In the room
Can't find zoom
Help me over there

Printed script
All well hid
I'm tearing out my hair

Screen I can't see
Please read to me
Feeling useless here

In the loo
Doing the do
Shedding a small tear

Blind as a bat
That is that
It's not funny at all

But I'll not stop
Go till I drop
Even if I fall

A balancing act

I've decided I must have been a clown in some prior time because my life has become a series of balancing acts.

Thanks to bipolar I'm constantly balancing my sleep and my mood to ensure I don't get too energetic and head into mania or too inwardly focused and depressed. It's a balancing act every day.

Thanks to MS I'm constantly balancing my energy, using spoon theory, to ensure I have enough left for Rachel and Mike and to get to bed.  It's tricky and annoying. And it has to be balanced with my mood to ensure my frustrations don't cause depression.

Then there's the literal balancing that I have to do everywhere I walk; I bounce off walls and door frames thanks to my sight and stability problems.  I have to consider, when I'm at home on my own, whether it's safe to walk up stairs, and almost every time it's not. There's no way I'm going to risk Rachel walking in and finding me on the floor.

I'm balancing the light and the dark; the exercise and the energy; the hope and the expectation; the fear and the worry; the wellness and the illness, the head and the heart.

What a life.
But at least it's a life.
And it could be much worse.
So I'll keep smiling.
Thinking positive
Balancing.

Just another MRI

We'd just like
Another image
Just to see
What's going on

We'll book you in
You'll get a letter
Then we'll know
What's going on

Yes, we know
It's not your favourite
But it helps us see
What's going on

Yes your symptoms
Are clear to see
But what matters most is
What's going on

Inside that head
We trust the image
More than you telling us
What's going on

We'll keep you calm
Here are tablets
Just let us see
What's going on

We know you're scared
And it affects you badly
But it's worth it to know
What's going on

Now just stay still
It's not that bad
They need to see
What's going on

Don't make a fuss
Aren't you an adult
It's about Doctors knowing
What's going on

What's going on?
What's going on?
I'm in panic that's
What's going on

This isn't worth it
I can't keep doing
These stupid scans that's
What's going on

How about listening
To how it is for me
Trust me to tell you
What's going on

The dark and noise
Stresses me out
I don't really care to know
What's going on

Because I feel it all
Inside and out
It's real to me, that's
What's going on

But yes I'll do it
Because it's protocol
So you can decide
What's going on

MS Calling

Available

MS Calling

For Everything Neuro

Right Now.

What is MS

I won't go into an explanation because there are many organisations who explain it brilliantly.  Here is the website of the MS Society which should answer any questions you might have about MS.

Spoon Theory and Me

You might well see me write about spoon theory; I probably have used it already.  This is the idea that we all start the day with a set number of spoons of energy and once they're all used up our day is done.

The idea was first developed by a lady called Christine and you can read about her and the theory here

I've used spoon theory to help me manage my mental health.  When I'm manic I can believe I have 1000 spoons and can do everything I want in any given day; I never get tired.  When I'm depressed I often feel like I have a mere 10 and it can take 3 just to get up, dressed, breakfast and out the house.

MS has taken my value of spoons to a whole new level.
Getting out of bed = 1
Shower = 10
Get dressed = 3
Breakfast = 1
Scooter to church = 3
Meeting = 2
Eat lunch = 2
Etc etc

I do not currently have the capacity to have a shower on the same day that I have a meeting unless my lunch is ready made in the fridge and tea pre-prepared by Mike ready for him to come home and I can sleep in the afternoon. 

I am determined to save 3-5 spoons to at least be able to chat to Rachel and play a game with her after school;I have to be careful.   These are the sort of things I have to think about.

One week of symptoms

In order to inform my appointment with the neurologist last week I had recorded every symptom I had experienced over seven days.  It even shocked me when I read through them all and perhaps this gives the most accurate view of what it's like right now for me.  It's not a pretty list and I'm embarrassed by much of it, but what's the point in keeping a blog about MS if I miss out the reality.

- double vision
- loss of vision
- lack of colour vision
- eye pain when reading or moving eyes
- eye sight was worse in the spa pool and went blank in my left eye when I got really hot!

- constant headaches not relieved by paracetamol
- migraines with aura including dizziness and nausea

- tinnitus
- reduced hearing in left ear

- stabbing pain in left arm
- lack of feeling in left arm
- pain in left hand
- shakes in left arm
- pins and needles in left hand, arm and shoulder and neck and back

- spasm in left leg (three times)
- no feeling in left leg
- weakness in my leg
- left leg pain after a few steps

- pain shoots down my back if I let my head flop forward

- reflux
- choking on food

- keep loosing my words

-  reduced bladder control

This zentangle
With seven sections
One for each day
As different as can be
This is the MS life
This is life for be

Symptom #4 Exhaustion

People talk about invisible illnesses and MS can be one of them when the main symptom you're experiencing at any point in time is exhausting.  But believe me, exhaustion and fatigue is one of the worst symptoms of MS.

I've started to break my exhaustion into two forms.
1. MS exhaustion
This is part of MS and results in me starting many days with no energy when I wake up. It might be due to pain or lack of sleep or for boo rational reason I can find.  In spoon theory terms, I can start the day with 3 spoons and that's what I need just to get through to lunch without doing anything.  On days like that I resign myself to rest and some work on my tablet if I can get my brain to function. 

2. Pain killer exhaustion
This is the hangover element which I referred to in the pain post earlier today.  Most pain relief is wonderful but it comes with a kick back and that is fatigue the next day.  I hate this with a vengeance and its the reason I take very few pain killers; I'd much rather plod on through pain and then schedule a down day for relief than have lots of pain killers and then suffer afterwards from the relief. 

I know Mike and Rachel find it really hard to understand the fatigue and exhaustion part of MS and I think it's the symptom which is most likely to negatively impact my mental health.

Symptom #3 Pain

Pain, weakness and exhaustion are the 3 worst things that I was dealing with, until my vision problems.  Of course I was being given pain killers by the GP but they either didn't work or put me to sleep.  Most days I'd cope without relief and then take a dose one evening to get a good nights sleep knowing I'd be hungover the next day.  Just this week I have been prescribed a specific nerve pain killer and it's made a huge difference; although I still have the constant aching pain I no longer have the vibrational and shooting pains.

So where is the pain?
Head - I have had a constant headache for over five months which shoots down my neck and back like a firework.  At times this headache has been like a migraine with nausea, but I think that's unrelated.

Eyes - since my vision was affected I've had pain through my eye balls and just above my eyes.  I also have to be careful not to look to the left or right without turning my head because that causes pain in my eyes.

Left Arm - I've had stabbing pain in my lower left arm for months and then pain through my wrist and fingers associated with the weakness.  When the arm feels heavy then it will often develop pins and needles which is a very weird feeling.

Left hip, knee and ankle - I've had pain through my left leg from my hip down most of which I'm sure is compensatory because of my fear that the leg will give way.  I also have to be careful that I don't stand or walk awkwardly and make the right side hurt.

MS hug - I didn't know that this was what it was called until I read about it but it's a great description.  Every few days I feel like I'm being squeezed tightly and have pain when I breathe.  It has scared me more times than I care to mention but is yet another MS symptom.

What a complex disease this is; the symptoms move and evolve and change.  Here's another of my zentangles to express the confusion and frustration.

Symptom #2 Weakness

It's hard to say when this period of weakness started because I was suffering from the side effects of a bipolar medication until this spring. But it's likely that it's been at least six months.

I first noticed something was wrong when my left leg kept going from under me.  I'm not a delicate girl, never have been, but I've never suffered from knees and ankles just giving way.  Then my wrist just had no power and then my shoulder couldn't lift my arm and my neck couldn't move properly to the left and so it continued.

When I eventually spoke to my GP the best I could describe was that my left side felt heavy and weak and altogether useless.  I could rely on my left arm or leg to do anything and I started using a walking stick in case it gave way.

This has been one of the most annoying symptoms of MS because it's not painful and it's not obvious, it's just like I suddenly became 80 years old. 

When I saw the neurologist he got me thinking about whether this had happened before and asked if I'd ever been diagnosed with glandular fever or ME or CFS in the past.  Twice before that I could remember I'd had exhaustion and weakness and strangely my left eye vision drops were at the same time as these.

A penny was dropping.
Now I just had to find out how to stop dropping things in my left hand.

I've attached this zentangle I drew because it depicts the myriad of MS symptoms I experience.

Symptom #1 Vision

I first lost the sight in my left eye in 1994 and was told I has macular dystrophy.  I accepted this diagnosis and moved on with my life and my vision very slowly returned.

Then in 2002 I had another sudden loss of vision in the same eye, although not as bad as previously.  This time I just assumed it was the macular dystrophy, got a referral to the eye clinic, was told that there was nothing to be done, visited a good optician and got new glasses.  By this point my brain was completely not bothered by the uselessness of one eye and so life went on.

In 2006 I had another sudden deterioration in my left eye, after having a nasty liver reaction to penicillin. Again I went back to the eye clinic and again they looked a little confused but put it down to the same old same old.

But those were nothing compared to 3 weeks ago when in the space of a few hours I lost all of the sight in my left eye; just like that!  There was nothing, all black. 

By this point I had received a diagnosis of MS (summer 2015) and so I just put it down to that and waited to go to the GP the next day.  I wasn't that concerned, in fact I was a lot more concerned about the dizziness and left sided weakness (see following posts) and so my GP wasn't too concerned and we waited until the next scheduled eye casualty appointment three days later. 

On those three days my left eye improved and I was able to see shadows.  But nothing felt right and I was worried that my right eye was suffering.  And I was right; the eye casualty staff treated my vision and even I could see how much worse it was than normal, although I assumed I just needed adjustment to my glasses.  After tests and tests and examinations with too many bright lights the diagnosis was "optic neuritis" caused by MS. Great!

We were back the next day for yet another four hours sitting in the eye clinic and a very depressing visual fields tests which showed no vision anywhere in the left eye and a significant loss of fields in an arc in the right eye; also indicating optic neuritis.  This was the a shock; the first real shock.  I knew my left eye was dodgy and that out seemed I'd probably been living with relapsing remitting MS all those years; but it never occurred to me that it could attack my right eye as well.

In the two weeks since then I've had 9 appointments of one type or another, and way too many blood tests to rule out lots of even nastier nasties.  My left eye has stayed with shadows and a few colours and the right eye has deteriorated, although I think that deterioration is slowing down.

Right now I can't drive, probably won't ever again unless a miracle happens.  I can't read anything smaller than font 48 (at a push) which includes medicine labels, cooker temperature and pin machines.  I can't read the guide on the TV or the letters through the door or the numbers on the bus or my name on the call screen at the GPs.  And I can't see peoples faces and that's awful. 

But I keep smiling because what else can you do.  And its pretty funny when I start talking to someone at the doctors assuming I know them and then realise I don't; I wonder what they thought I was going on about.

A bit of an introduction

This is my brain

It's not well behaved

The chemicals are wonky

So my moods aren't restrained

That I have lived with

For four years and more

But one of my treatments

Left my health on the floor

Just when I thought

It was all getting better

My left limbs gave out

And my sight did teeter

With hospital trips

Filling all of my time

Life has got hard

But feels better in rhyme

This new blog

Is a place I will write

All that we experience

Both the wrong and the right

Funny or crazy

Cool or annoying

I'll try to record it

Here on MS Calling

Light a candle for someone online

The Church of England has launched their funeral project, with lots of information to help anyone who might want to have a funeral with prayers and hymns.  It's well worth a look.

One part of this project is "light a candle" which leads you through remembering someone and lighting a candle online in their memory.  It is beautiful and has really touched me today when I'm too ill to get to church but wanted to pray for someone.

The link to the light a candle is https://churchofenglandfunerals.org/light-candle/

Or just click the image below