PiP is bad enough, please don't make it worse

This article by the Guardian paper explains the proposed changes to assessing disabled people for Personal Independence Payment (PiP) better than I could.

But I'll just provide you with a taste of how bad the process has been for me.
- I first applied in April 2015 after a year of not being able to walk more than 20m or so and being really disabled by my unexplained (pre diagnosis) illness
- I filled in the form on my own and stated how things were on an average day (mistake number one - it should be an assessment of what I can regularly do)
- It took months for my claim to be processed and my condition kept getting worse
- I was diagnosed with MS
- I sent in all the new letters as they arrived
- my GP wrote a letter because she wanted them to know I desperately needed this support
- I was eventually called for a face to face assessment and, me being me, I forced myself to go and do it, despite pain and landing myself in bed for several days afterwards
- I was turned down and was assessed as being 1 point under the level for living and 1 point under for mobility. they thought I could walk more than 200m because I could stand for 2 minutes
- I lost my sight and was now blind
- I asked for a re-examination and said I'd provide the new letters from the ophthalmology
- Before I managed to send the letter, 3 days after asking for my right for the re-examination, they turned me down again
- I rang and said they weren't applying the process right and I was going to appeal
- They told me not to appeal because I had been assessed , they even had a claims manager ring me and convince me not to because she'd personally arrange a review of my case and now I was blind I'd clearly receive PiP
- I received another letter saying I had to start the PiP process from scratch because my condition had deteriorated too much (funny that, with a degenerative disease)
- I took out all my frustrations down the phone two days in a row speaking to umpteen people who just said this is how it is but they'd make sure it was painless this time and I wouldn't have to send everything again
- I agreed to stop the original claim

You know what's coming don't you...

- I rang to start the process again
- I was told my old claim was now archived and I'd have to provide all the information again
- and I'm blind so that's really easy now, thanks!
- I was given a month to complete the massive forms again, but after a week they hadn't arrived so I rang to be told that I'd requested large print versions and they take longer to despatch. And no I couldn't have an extension for completion and return
- Mike and I completed all the forms again!
- and now we wait
- and wait
- and expect the worst

This is how it's been for me.
In 9 months I've filled in  5 sets of forms, made over 30 phone calls at my own expense, argued points of legislation and still been beaten. And I'm highly educated and super determined.

We are the lucky ones, we can afford to help ourselves.  Already we've spent over £3000 in "disability aids" and we need to spend at least the same again.  And yet they want to make the system worse and it'll happen without anyone even noticing. 

The system is a nightmare.
It's completely dehumanising and I honestly would gave given up by now if we didn't need the money to buy equipment I need.

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God's stream of blessing #prayer #bible #God

I've posted briefly on MS Calling about my experience of Lectio Divina yesterday.
As most of you will know Lectio Divina involves reading the same passage of the Bible slowly and repeatedly whilst listening to what God wants you to hear from it.

Well I couldn't read the passage, it was too small and the church was dark and my phone didn't have enough signal.  But I trusted that God would find a way for me to hear from Him.  And He didn't fail me.  The passage from Hosea was read aloud at the start of the session and I asked God to speak to me in that reading and He gave me

"How can I give you up?" Hosea 11:8

And then He gave me an endless supply of words, almost like a song more than a poem, which I wish I could have recorded some how.  It went on for the full 15 minutes of the session, just an endless succession of positive words prayed over my head and heart.

I've sat here today, stuck because the evening after the session went a little wrong, asking God if He will give me the stream of blessing again.  And I've decided that I'm going to sit here with my eyes closed and just touch type whatever comes.  Who knows what will happen, but here goes....

How can I give you up

I have called you by name

you are precious to me

and you always will be

even when you have doubt

I won't let you down

I'm there by your side

Keeping you in sight

Endlessly with you

I'll never abandon

Above time and space

I'm invested in you

and I trust in your patience

and I know you can cope

and I hear you in tears

and it hurts me within

but know you're not alone

I'm never going to leave

Forever you're mine

and you have much to give

just keep on going

even if you're crawling

I need you on my side

throughout all your life

it won't always be this hard

and I won't let you down

I have to say it just didn't flow like yesterday and it leaves me feeling a bit disappointed, but perhaps it's not meant to be something which can be recorded, it was meant to be a blessing poured out.  So I'll just leave this here and hope it makes some sense to someone apart from me.

Slipping and Sliding #ms

It might be rainy and windy outside but it's not icy and there aren't any slippery leaves.

Yet yesterday I kept slipping, sliding and falling over

In fact it even continued when I was home

On a nice non slip carpet

Oh yes

I forgot

It's not the floor

I have MS

sapphiresky1410.deviantart.com

I hate the pain and the pins and needles and stiffness but what I hate most of all is not being able to trust my body any more.  I can't trust anything down my left side.
I don't trust my left foot to go down properly
Or my left leg to actually stay straight
Or my left arm to move normally
Or my left hand to grip at all

And it's really really really annoying and more and more becoming dangerous.
Yesterday evening I went from completely fine to a falling over
Twice in ten minutes I managed to save myself
But then I fell four times in the next hour
And that hurts when I land
And means I drop things

aaaarrgggghhhhh
That's all.

Blind Lectio Divina #prayer

Yesterday at our church's Open Door Retreat we were reading the Bible using Lectio Divina.  For those of you who don't know what that is then here is a brief summary

First one goes to a quiet place and recalls that one is about to listen to the Word of God. Then one reads the scripture passage aloud to let oneself hear with his or her own ears the words. When one finishes reading, pause and recall if some word or phrase stood out or something touched one’s heart. If so, pause and savor the insight, feeling, or understanding. Then go back and read the passage again because it will have a fuller meaning. Pause again and note what happened. If one wants to dialogue with God or Jesus in response to the word, one should follow the prompting of one’s heart. This kind of reflective listening allows the Holy Spirit to deepen awareness of God’s taking the initiative to speak with us.
http://www.ignatianspirituality.com/ignatian-prayer/the-what-how-why-of-prayer/praying-with-scripture

Now you might have noticed that one of the key things about lectio divina is that it is done quietly, alone and involves reading.
See any problems?
No, don't worry, neither did I.
Not until I realised I wasn't going to be able to read the words on account of the normal print size and low light in church.

But I wasn't going to let a little thing like that stop me.   I just made sure that when the scripture was read aloud at the start, as is the way we always do it, that I would listen into God carefully and see if he brought something to my attention and just sit with that.
And of course God did not fail
He never does if I listen and trust Him.
And the words I was given: "How can I give you up?" Hosea 11:8

I will blog more about what came from this at LLM Calling, but I'm posting it here because it's shown me, yet again, that if I'm patient and trusting then I will find a way to do ANYTHING.

Hear that?
ANYTHING
Watch out World
(She says as she's sat on the couch after having a night of pain)
But I will rebound and then you just watch!

10 years grieving breast is best

I caught up on 'call the midwife' today (from 24/1/16) and found myself crying buckets. 

The story line was about a new mum who couldn't breast feed, no matter how hard she tried.  She was tying herself in knots trying to breastfeed even though her baby was dehydrated.  As I watched I realised I was sobbing; not just shedding a few tears but really crying.

I can't believe I'm still grieving 10 years on.

I was that mum.
I was desperate to feed Rachel.
Desperate to nurture her with my body's milk.
Desperate to do everything I could for her.
I was so certain that breast was best that I hadn't even bought any bottles or a steriliser or anything.
I hadn't allowed myself to even consider not breast feeding.
But the reality was that I had no milk to speak of, barely anything at all.
I couldn't make my body produce more, it just wasn't there.
And I failed Rachel.
That's how it still feels; it feels like I failed her.
In the end, on day three, with her weak and dehydrated I had to let the special care nurses give her formula milk.
And I wept.
I wept for her.
But mostly I wept for that fact that I'd failed.
I couldn't even feed my own baby.
And I still grieve.

But why?
Why do I still grieve?
I mean it makes no sense.
She's a strong, bright, independent, feisty, healthy and caring 10 year old.
She clearly hasn't suffered from lack of breast milk.
My fears about our attachment were unfounded.
So are those about her health.
And I dread to think what we'd be contending with if breast milk had made her brighter.

Yet still I grieve.
Perhaps I always will.
I know I'll always prickle at posters and campaigns that say breast is best.
Yes, it is, for most; but for some of us, it's definitely not.

Fitbit Freakiness: Floors

I'm finally getting used to my Fitbit charge HR; well obviously using it is easy, I just wear it; but trying to understand what the dashboard is telling me has been interesting. After a few weeks I decided to stop trying to figure it all out and just embrace the crazy and freaky things my Fitbit tells me.  But it's boring doing that on my own, so thought I'd share some of them. 

Today it's "floors".

Floors is meant to tell you how many fights of stairs you go up each day.  It sounds simple, but apparently my Fitbit finds it quite hard.

I have awful problems going up and down stairs.  I am not stable on my feet, with MS balance issues and blindness issues and pain and exhaustion.  Basically I come down the stairs in the morning and I go up them again at night.

Isn't it weird then that for the last few days I've climbed no flights of stairs?  I know I woke up in my bed so the only sensible conclusion is that I levitated, cool!

And one day I climbed four flights of stairs?  Really?  I don't remember that at all.  I must have been sleep walking. 

What Fitbit freakiness do you experience?

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National Hug Day: 5 poems on the theme

Today is national hug day
I'd had five by lunch
Two from my own Rachel
Which I value very much

Every month that passes
She steps that bit away
But hopefully there won't come soon
A no hug sort of day



xxx

She hugs books
Doesn't care about the looks
Be they heroes or crooks
They grab her with their hooks

xxx

A great friend doesn't care
What mess your life is in
They walk in come what may
Blessing with a grin

A hug is quickly given
One which fixes all
And suddenly your messes
Seem not quite so tall

I hope that I'm that friend
To others in my life
To give back what I receive
In mess, trouble or strife

Inspired by MommysMeTime

xxx

A hug
Glue for the heart
Fixes the broken bits





xxx

Hugs
Heal all pain
Should be prescribed

Gluten free, dairy free, sugar free treats

I know it sounds impossible but apparently I'm not the only one on a limited eating plan who would like occassionally to have a treat of some sort every now and again.  Here are some of the recipes I've found which will need tweaking a bit to remove nuts or sugar but look like they might be possible.   I'll let you know if they work at a later date.

Minimalist Bakers' Banana Bread

One Bowl Gluten Free Banana Bread by Minimalist Baker (and the photo is of her recipe)

Vegan Biscuits - Scones by Minimalist Baker

Chocolate Peppermint Cupcakes by Minimalist Baker

Pumpkin Muffins by Minimalist Baker

Dark Chocolate Truffles by Minimalist Baker - although these might be dangerous to have around

Gluten free banana bread by A Little Insanity

Flourless Banana Muffins by Running with Spoons

Flourless Banana Bread by Chocolate Covered Katie

One Minute Chocolate Mug Cake by Chocolate Covered Katie - I'll be trying this with dairy free hot chocolate flakes rather than cocoa powder

Avocado Chocolate Cake by Chocolate Covered Katie

Blueberry Pie Pancakes by Chocolate Covered Katie

Paleo Chocolate Fudge Balls by Chocolate Covered Katie - yumyumyum

Some animals rachel drew #proudmum

Rachel is really into drawing at the moment.   I'm so thankful for the fact that she can take a photo of her creations and I can zoom in and see them.  Here are some I thought you'd like to see.

That report about the cure for MS

I love the fact that there's been a breakthrough of sorts in treatment for MS but it's frustrating that it's being hyped as a wonder cure when actually it's a long way from that.

The treatment is for people with relapsing remitting MS, unfortunately that's not me any more.

The treatment involves giving chemo - that made some people a lot more sick than they were before and showed that it's a balance.

There have only been 3 real success stories and they're nothing short of miraculous, but it's early days and who knows what's to come. 

I wish them well and hope they continue to be well. But hope others won't have their hopes raised only to be dashed.

More research is needed, let's celebrate the fact that it's happening and keep funding more.

Here's a report which provides some facts MS Trust

Avocado addiction is A-OK

My avocado addiction is good for me in many ways.  You should give them a go.

Yum
Yum
Yum

Follow the link to find out all the health benefits http://idealist4ever.com/this-is-what-happens-to-your-body-if-you-eat-avocado-every-day/

Two weeks in #healthyeating #ms

I'm into week three of my healthy eating as a way of taking control of my MS.  I can't say I'm in less pain or feeling less symptoms but I'm definitely more energetic.  I'm having to learn to not use all this energy at once though because it's causing me more pain, but I'm sure I'll find a balance. Maybe.

Anyway, I'm enjoying the food and I'm over the cravings pretty much.  I'm into a routine and its working as a family with me swapping out pasta for courgette noodles or salad.  Rachel has been trying lots of my smoothies and salads and concoctions and surprising herself with what she likes.

The definite problem area is eating out; you can't find anything vegan, nut free, gluten free, sugar free and sweetener free.  But perhaps when we try and go out I'll find the best option and suffer any bad effects which might result.  (I tried to have a little naan over the weekend and my tummy wasn't happy that night.)

What else is there to share?
Well the 10lb weight loss has been a nice boost.
And I'm addicted to avocados.

Suicidal social media #blind

I'm not making a grand statement
Just sharing what I know
I try to type social media
But suicidal media tends to flow

Perhaps there's something in it
Because it can make me pretty low
But more likely it's my typing
Like my sight it's starting to go

How to blog when you're blind

Just for fun, and because I've been asked a few hundred times over the last month, these are my to ten tips for how to blog when your blind.

1. Choose a blogging platform
Find a blogging platform with an interface or app you can see with the vision you have, or hear through the software you use.  I use blogger because I've been using it for a decade and know exactly how it works which makes it easy for me.  I know most people say WordPress is easier to use if you're sight impaired so my advice would be to look at both and use which you prefer.

2. Choose your subject
Decide what you're going to blog about.  The world's your oyster, you can blog about anything.  But perhaps what you eat for breakfast won't keep you, or your readers, interested for long.  I recommend you keep it vague unless you know exactly what you'll be writing about.

3. Name your blog
Think of a title which hasn't been used before.  Make sure that title is easy to type (yes, that really matters when you're blind) and doesn't easily convert to something else through predictive text - another bane of the blind person's life.

4. Introduce yourself
If people are going to read your blog then they're wanting to know about you.  The best way to start therefore is to introduce yourself and what your aims are for blogging.

5. Take photos
Or find images, but let's face it, it's not easy to look for images when looking is an issue. Mind you it's not that easy to take photos but I point in the general direction and keep clicking until it KSS vaguely right.  I know my photos are nothing like the quality they used to be, but they look OK to me :). It might be tempting to not use photos with your posts but in my experience it boosts the interest in the post, brightens up the blog and is useful on social media.

6. Write to your hearts content
I have tried over the years to have focused blogs but my life and mind aren't made that way.  I am always flitting between interests and find that letting my blog reflect my personality works best for me.  I know I could have more readers if I was narrowed down, but I don't read to increase numbers, it's cathartic for me.  Now the one major challenge I've found as a blind blogger is that my typing isn't perfect, by any stretch of the imagination, and I can no longer check it.  I was worried about that to begin with, but now I just embrace the mess.  After all, everyone knows I'm trying my best.

7. Promote your blog
I bet you never thought you'd have to become a promoter when you decided to become a writer but I'm afraid it's all part of the game.  You can of course just write and post, but no one will know to read it, not even your friends.  I would advise you to post on Twitter and to set up a Facebook page and link there as well.  You can always choose to Instagram, Pinterest, Google plus and more at a later date when you've got used to the first two.

8. Respond to comments
Hopefully people will comment, although my experience is that these days most people comment on Facebook or Twitter rather than on the blog.  Keep up with these comments and questions and get involved in the chat, it's a lot of fun and you'll probably meet some lovely people.

9. Just do it
If your worried, don't be; you're clearly interested in blogging because you're reading this, so just set your mind and fingers to the task and have a go.  What have you got to loose?  I for one would love to read from other blind bloggers.

10. Have fun
If it's not fun then don't do it or do it differently.  This is meant to be something we do for fun.  Enough of life is hard without sight, don't keep blogging if it's not fun.

Now to take a photo.
What shall I chose today?

Celtic Daily Prayer from the Northumbria Community

I want to recommend the MP3 download of Celtic Daily Prayer from The Northumbria Community.  I purchased it a week ago and it has been wonderful to be able to get back into my rhythm of morning and evening prayers without the stress of trying to remember what I can no longer read.

If you, or someone you know, is struggling to read to pray I think this resource would really bless you, or them.

Psalm 80 rewritten #poetry #song #bible

Lord, you are our leader
We beg you to listen now
We are in awful trouble
Save us any way you know how

Chorus:
Lord, look kindly upon us
Let your face shine bright with joy
We know then we'll be blessed
You'll save every girl and boy

Lord, please drop your anger
For so long we all have cried
Our enemies laugh about us
Has your love for us really died?

Chorus:
Lord, look kindly upon us
Let your face shine bright with joy
We know then we'll be blessed
You'll save every girl and boy

Lord, you led us from Egypt
You planted us like a vine
You watered us as we grew widely
Yet now you watch us decline

Lord, please turn and see us
We beg you to save what is yours
We will never again turn from you
We'll worship you on all our shores

Chorus:
Lord, look kindly upon us
Let your face shine bright with joy
We know then we'll be blessed
You'll save every girl and boy

Psalm 122 rewritten #poetry #song #bible

Psalm 122: Song of Praise and Prayer for Jerusalem.

Jerusalem is your city
Your home in this earth oh Lord
I'm glad when I come to visit
Giving thanks, oh Lord my God

Jerusalem is a family
Where tribes come to meet with God
There are the thrones of David
Where we all are judged by the Lord

Pray for peace in Jerusalem
For safety and goodness within
We pray this for all God's family
And for all who will let the Lord in.

Spiralized fingers anyone? #zoodles #poetry

Anyone for extra protein
It's totally free of charge
It wasn't meant to be there
My finger's now not so large

You might say "be more careful"
Or "keep an eye on what you do"
The thing is I had my eye on it
But the wrong one, yes it's true

Three colours, three superfoods #ms

My new eating plan is going well, I'm full of energy and the sugar detox headaches have gone. 

I'm enjoying the smoothies and soups and loving the colour of my meals.  It's funny I hadn't realised how bland food can be in colour and taste; but pure fruit and vegetables are full of exciting flavours and colours.

I miss yogurts, of all crazy things what's that about?  I expected to be craving chocolate or cheese, but no, is yogurt I miss.

At lunchtimes I'm focusing on getting my superfoods; mostly because Mike and Rachel don't want them in their dinners.  The superfoods I'm eating most days are beetroot, oily fish and avocado.  They're full of antioxidants, anti inflammatories, vitamins and minerals.

If you'd like to know more about any of them and what health benefits they have then follow the links below; I've taken one from reach of three websites I use for information and research.

The benefits of eating oily fish
http://www.nhs.uk/Livewell/superfoods/Pages/is-oily-fish-a-superfood.aspx

The benefits of eating beetroot
http://www.bbcgoodfood.com/howto/guide/ingredient-focus-beetroot

The benefits of eating avocados
http://authoritynutrition.com/12-proven-benefits-of-avocado/

Four more #ms #healthyeating

It's been four days
No less, no more
Four days living life
Having fun, eating pure

And in those days
It's been family time
With time in prayer
And hearing a sign

A sign that life's not
Just a diagnosis
So now I'll continue
To live making most of it

I'll keep on eating
Laughing, praying
Doing this mothering
With less worry about MSing

But don't think this means
I'll neglect my blog
That won't happen
Unless life becomes a slog

Consultation about disability aids and appliances

Did you know that there's a consultation out about how disabled people are assessed for personal independence payment?
No?
They kept it pretty quiet and released it just before Christmas so everyone else was distracted.

Here's the link
https://www.gov.uk/government/consultations/personal-independence-payment-aids-and-appliances-descriptors

The DWP are trying to decide if disabled people who use aids and appliances deserve to have financial help to buy them, and if so how much. 

That's fair enough, I agree consultations are a good thing, but then you read the document.

The consultation document is horribly complicated and biased if you even manage to wade through and understand it at all.  It makes it seem like all aids and appliances which disabled people use are low cost. 
That's just not true. 

My new mobility scooter cost over £2500! 
The digital magnifiers I need to be able to read letters cost at least £500. 
The magnifiers I would like to be able to use my computer effectively cost more like £2000. 

These are not low cost and we can only contemplate buying them because we have savings.  I dread to think how low income families would cope.

The one thing that really jumps out at me is that the document says the NHS or councils fund many of the aid and appliances - that's just not true. I dread to think how many times I've been told that I should apply for PiP to fund equipment I need to buy.  The NHS and councils are cash strapped and do anything they can not to fund aids.

And remember, these are aids and appliances to help people who are disabled do normal routine tasks.  Not to do anything special. 

Mike pulled out the questions from the consultation document for me so I could actually start to answer them.  So I thought I might as well share them here.  Please consider answering them yourself if you feel as strongly as I do. 

Q1 – what are your views on the current system and its
advantages and disadvantages compared to options one,
two, three, four and five? In particular, we would welcome
comments on:
 receiving a regular, fixed monthly sum;
 budgeting on a monthly basis;
 having to save to purchase aids and appliances; and
 having no restrictions on how the benefit can be spent
but potentially lower purchasing power.

Q2 – what are your views on the advantages and
disadvantages of option one compared to the current
system and options two, three, four and five? In particular,
we would welcome comments on:
 targeting resources through a lump sum, which
would be less than the cumulative value of the
equivalent monthly payments, and whether this
should be a fixed or discretionary amount;
 the lack of passporting and exemption from the
benefit cap;
 being able to purchase aids and appliances
immediately;
 restricting what the benefit could be spent on through
the use of vouchers, but potentially increasing value
for money; and
 a periodic payment, recognising that aids and
appliances may need to be serviced or replaced.

Q3 – what are your views on the advantages and
disadvantages of option two compared to the current
system and options one, three, four and five? In particular,
we would welcome comments on:
 a lower weekly rate than the equivalent rate for those
scoring the same points but from other descriptors;
 a fixed award (as opposed to a discretionary award
outlined in option 1);
 the lack of passporting and exemption from the
benefit cap; and
 no restrictions on what the benefit can be spent on,
but potentially with lower purchasing power.

Q4 – what are your views on the advantages and
disadvantages of option three compared to the current
system and options one, two, four and five? In particular,
we would welcome comments on:
 focusing eligibility on those scoring at least some
points from descriptors other than aids and
appliances; and
 whether there should be a limit on points for aids and
appliances or restrictions on where they are scored.

Q5 – what are your views on the advantages and
disadvantages of option four compared to the current
system and options one, two, three and five? In particular,
we would welcome comments on:
 excluding eligibility for aids and appliances which are
a poor indicator of extra costs and;
 which classes and types of aids and appliances are a
good indicator of extra costs.

Q6 – what are your views on the advantages and
disadvantages of option five compared to the current
system and options one, two, three and four? In particular,
we would welcome comments on:
 focusing the benefit by halving the points awarded for
some or all daily living activities;
 a fixed payment with only a broad relationship to
actual extra costs;
 having to save to purchase aids and appliances;
budgeting on a monthly basis; and
 no restrictions on spending but potentially with lower
purchasing power.

How to respond to the consultation

34. Please send your responses to:
PIP Policy Team
Department for Work and Pensions
Ground floor, Caxton House
Tothill Street
London
SW1H 9NA

Or email to:
PIP.consultationfeedback@dwp.gsi.gov.uk

35. Please ensure your response reaches us by 5pm on 28 January 2016.

36. When responding, please state whether you are doing so as an individual or representing the views of
an organisation. If you are responding on behalf of an organisation, please make it clear who the organisation represents and, where applicable, how the views of members were assembled. We will acknowledge your response. We may contact you to follow up on your response; if you would prefer us not to do so, please let us know in your reply.

Third day of oms plan

Yesterday was day three of the food plan and it all went well.  There were even less photos taken, which is bad for the blog, but good overall because it means I'm not so obsessed with what I'm eating.

The food plan was:
Green Smoothie

Butternut squash soup
Smoked salmon and gluten free seeded roll

Berry Smoothie

Sea bream with green beans and salad

Sugar detox

It's day four
Day four of no more
No more refined sugar
Depleting my body's store

All over aching
My body is paining 
And generally complaining
But I know this will be ending

Eventually!

Second day of OMS plan

I was hungry yesterday
You can tell that because I forgot to take photos of most of my meals.  Oohps.

It went well though and I stayed on plan with a few more vegetables consumed than planned but that's all good.

Here's what I ate:
Green Smoothie

Smoked salmon, avocado and beetroot - see the photo, it was amazing

Orange stuff Smoothie - see the photo

Salmon with Cauli rice and large salad - yum yum yum

Oh and I drank 2 litres of water as well.

PS
Certain of my friends heard about this plan and told me to expect "rocket farts". You'll be glad to hear that I've not been on a space trip yet.

This bike has MS @msgetinvolved

This video is amazing
This website is amazing
Go visit

This bike has MS

Depressing old grief

I wrote about how I was somewhere on the grief cycle in November here so it's not like this is new news; but I've clearly moved from shocked to sad and it hit me with a knock out blow at the hospital yesterday.

Having to go through all the tests was bad enough with the pain of bright lights in my eyes and having to focus on something I couldn't really see.  But to then hear the lovely staff saying "oh dear" and "still no change" and "no improvement" and other informative phrases was really depressing.  And to have a consultant say that with no improvement at this stage we shouldn't expect anything anytime soon. 

I knew that's what I'd be told; after all I use my eyes ever day and I know nothing's improved.  But I hoped it might be a bit better and I thought they might be as positive as they were last time I did the tests. But no, the positivity had vanished.

I don't mean to criticise; the staff weren't uncaring or unsympathetic or even despondent, they were just realistic and factual and resigned. 

I've lost almost all my sight. 
I can't see to read books.
I can't see to read signs. 
I can't even see signs are there. 
I can't see many colours.
I can't see peripherally.
I can just see a small disc of blur centrally.
And until God decides to grant me a miracle I'm going to be living like this for the foreseeable.

And as for that miracle; yes I do believe in them but I believe God is now likely to perform that miracle on my emotions and acceptance than on my eyes themselves.  Although I wouldn't turn down a physical healing. I'm open to that and pray for it every day, even though it feels selfish.

I know I'll get through this and get used to this new way of life and make the best of it as I always do, especially with God's help; but I need to take some time right now to grieve the loss with sadness.  I need to cry and for that to be OK.

But that's not the hardest part.  The hardest part is the need for help.  I need help to do things I've always taken for granted, including crossing the road, and I have to get used to that even if it's only for a short period of time. 

Now I'm writing, I'm wondering. 
Perhaps there's something for me to learn in this need for help.  I will truly learn what it's like to be reliant on others and on God. I'll better understand those I minister to.  And I'll come deeper into God's love as I rely on Him ever second of every day.

So yes I'll cry, but I'll also rest and learn. This will be something I live through and learn from.  One day at a time.

ECLO and the digital magnifier dream kit

The ECLO (eye clinic liaison officer) at the local ophthalmology department is a wonderful woman who's role is to help people like me with vision loss come to terms with the change in our lives both emotionally and practically.  She is really easy to talk to and she completely "gets it".  She's not bothered by tears and she's positive and full of ideas without being patronising.

Yesterday I was able to have a good chat with her and get lots of my emotions and expectations and grief of my chest.  And she was great, as ever. 

But then she introduced me to the most amazing bit of kit and I'm not sure if I love or hate her for that.

It's a digital magnifier and its truly awesome.  It is a hundred times better than the basic magnifiers, ten times better than the phone magnifiers and more portable than the mouse magnifier.  But with a price bracket to match it's brilliance.

What's to love:
- built in stand means my shakey hand isn't an issue
- built in stand means both hands are free and I might even be able to draw or colour with it
- a really stable issue
- many different magnification choices for different uses
- colour changing for both background and words which means I can use the yellow on black which is definitely best for me
- really portable in terms of size and weight and battery powered
- discreet and user friendly

What's not to love:
The price.
Almost £500, possibly a bit less on Amazon.

I guess I better get on the case for starting the process for reapplying for personal independence payment if I want one of these.

Here's the information the company provides about it:
"The handheld Smartlux Digital model 16501 offers variable magnifications of 1.7x to 12x. With its non-reflective hard coated 5 inch LCD screen, and three levels of brightness, the Smartlux Digital delivers a crisp, brilliant image. It provides full colour reproduction and a choice of contrast enhanced black-on-white, contrast enhanced white-on-black, and for the glare sensitive, yellow-on-black and black-on-yellow. Eschenbach optics ensures there is no distortion of the image. Even at high magnifications or when the display is moved, the image remains sharp. The generous depth of focus, makes Smartlux Digital ideal for use even at different distances.'

What I can see: candy crush #blind

Rachel and I were playing the "what can you see" game again yesterday and she was interested in how I can still play candy crush. 

Yes, I'm a candy crush addict.
No, I'm not ready for abstinence.

I can use accessibility tools to zoom into most things on my phone, but not games.  Rachel finds it really weird that I still find it relaxing to play candy crush and I was finding it hard to explain. 

So she used her photo editing kit to create something which we think is as close as we can get to what I can see.  I told her it's really blurry, really really blurry; and the colours are muddy and quite similar to each other.  I can just about figure out which colours match and if I get it wrong, well it's only a game (yeah right!).  

Of course I really can't make anything out in the blurred and less coloured version to confirm it's right, but it helped Rachel so I thought I'd share it here as well.

Pupils and pupils

Today is the first day back at school for Rachel and her fellow pupils after the Christmas holiday.

And today is the first day back having my pupils dilated and examined by ophthalmologists in the hospital after the Christmas holiday.

There's something very balanced about this; but, as I'm sure some school pupils feel, I'm not impressed.  I am praying that this year contains less doctor appointments than 2015.  I know they're all there to help but they're not exactly a positive and uplifting experience.  Or maybe I'll be surprised and today they'll have good news for my sight, here's hoping and praying.

* I found this image on a website talking about emotions but it clearly didn't originate there. I can't find the original source but would love to acknowledge it if anyone can find it

First day of OMS eating plan

Yesterday I started the Overcoming MS eating plan which is designed to reduce inflammation and alleviate MS symptoms and stop progression of the disease (See this post for more details).

I was really stressed on Sunday night about starting it; worrying that it would trigger my eating disorder head and become obsessive or trigger the other eating disorder head and I'd just fail and need sugar.  I almost talked myself out of even trying but I'd bought all the food and made up smoothie bags ready to be blitzed and written my meal plan so I thought I might as well try and see what happens.

Well day one was fine. In fact it might be the first day I've ever tried a new meal plan and felt good.  I wasn't hungry and I wasn't demented from lack of sugar and I didn't even get snappy at Rachel.  I won't count my chickens though, I'll have yo go through the nightmare of sugar detox at some point this week and it won't be pretty.

Anyway...
Here's what I ate on day one and some photos of the smoothie bags, soups being cooked and my evening meal.

Green Smoothie
Roasted Veg Soup
Gluten free bread roll
Berry Smoothie
Chicken Risotto & salad
Peach and grapes

(The risotto is pink thanks to Rachel's inspired inclusion of beetroot)

I am no longer my own but yours Lord

A friend posted this prayer from the Methodist Church and it speaks deeply to me as I enter the new year.  I don't know what's to come but I do trust God to be with me in it all.

"I am no longer my own, but Yours.
Put me to what You will,
rank me with whom You will;
put me to doing,
put me to suffering;
let me be employed for You
or laid aside for You,
exalted for You
or brought low for You;
let me be full,
let me be empty
let me have all things,
let me have nothing;
I freely and wholeheartedly yield all things
to your pleasure and disposal.

And now, glorious and blessed God,
You are mine and I am Yours.
So be it.
And the covenant now made on earth,
let it be ratified in heaven.     Amen."

Lifestyle changes to improve my MS symptoms

In addition to the taking of supplements and making changes to my diet to improve my MS symptoms, I'm going to work to reduce stress in life through lifestyle changes.

3. Lifestyle changes:
- Mindfulness and Prayer daily
- Massage weekly
- Acupuncture monthly if u get funding through the PiP system
- Regular light exercise eg seated activities and Yoga
- Stay cool: headed & bodied
- Reduce stress where it's unnecessary eg stop worrying about things I have no control over
- Find the funny side of life, smile and laugh
- Stop doing those non essential things which deplete my energy but don't energise me in other ways; and use energy on things which bring me joy
- stop comparing myself to others
- listening to more books and dancing along to more music and doing other things which make me feel better about myself and life in general

Dietary changes to improve my MS symptoms

In addition to taking supplements I'm going to make dietary and lifestyle changes to help reduce my MS symptoms and progression.

2. Dietary changes:
I am going to make dietary changes in six phases over six months, because I honestly don't think I'd manage it all at once. These dietary changes are based on research gathered together and tried out by Kim at The MS Diet for Women.  I'm going for changes which are entirely possible bit by bit and which I can monitor the effects of to determine what my own triggers are.

Phase one: January 2016
- Stop drinking fizzy drinks
- Drink at least 2 litres of water each day
- Drink one glass of cranberry juice each day
- Drink a fruit smoothy every day made with coconut milk and 3 portions of fruit
- Eat at least another 3 portions of fruit every day
- Eat 3 cups of green vegetables every day
- Eat 3 cups of bright colour vegetables each day
- Eat 1 cup of white vegetables each day
- Eat oily fish twice a week eg salmon - Omega 3
- Go vegetarian twice a week
- Eat chicken on other days
- Keep a complete record of food and drink and MS symptoms over the month to try and identify any triggers

Phase two: February 2016
- Remove aspartame and replace with Stevia where necessary

Phase three: March 2016
- Stop eating dairy

Phase four: April 2016
- Stop eating gluten and wheat

Phase five: May 2016
- Stop eating saturated fats except lean poultry

Phase six: June 2016
- Stop eating heated fats
- Stop eating refined sugar

Supplements to improve my MS symptoms

MS is an auto immune disease which causes inflammation in the body, for example in the optic nerve.  I can't stop or get rid of MS but I'm hoping to reduce some of this inflammation and therefore reduce the risks and pain and progress of the disease. 

To do this I'm going to try make changes to reduce inflammation.  These can be broken down into three categories:

1. supplements
2. dietary changes
3. lifestyle changes

1. Supplements:
I've done a lot of research into vitamins and minerals which have been proven to be effective in reducing inflammation and specifically had success for people living with MS.  There are only a few which are agreed to be beneficial but many more which are shown to have no negative effects and which might actually contribute to improvements for people.  So I've put together the following list of supplements which I will take daily, on top of a balanced diet, to hopefully improve my eye health first and secondarily my MS symptoms.

Agrimony
Barberry
Copper
Echinacea
Ginger
Magnesium
Selenium
Vit A
Vit B1
Vit B12
Vit C
Vit D
Vit E
Zinc

2016 - making changes

I don't like new years resolutions; after failing too quickly at too many I've learned that they don't work for me and so I don't do them anymore.  However there's nothing like a new year, closely preceded by a birthday, to help focus if the mind on what could be changed to improve life.

I know everyone keeps telling me how wonderful and positive and inspirational I'm being about my health and sight and life but believe me, it's an act and it's running out of time.  I'm not coping that well with it and I'm at risk of going into quite a despondent place (especially given the time of year and dark winter days) if I keep focusing on what I've lost rather than what I can and will do.

So.... I'm going to:
- make an attitude adjustment to focus on gratitude even in the darkest days
- actually ask for help rather than wishing people would offer
- stop regretting and ruminating on what I can't do and instead celebrating what I can
- change a few small things at a time to help me feel better, rather than trying to revolutionise everything at once

And most importantly. I won't beat myself up when I fail and I won't compare myself to anyone else.

Wow; that last one is a major hurdle in itself.

So wish me well, it's going to be a journey.