Act Now - to fight for your independence

One for all and all for one…Thank you over 1000 People have already emailed their MP

When I listened to Esther McVey make her commons statement with increasing horror my first thought was – Do I have the strength to fight this!

I’m tired, ill and facing another bleak winter in the sure knowledge that I will be bed bound again very soon – Just like every winter.  That knowledge hangs like a black cloud over our house, my husband gently reminds me when I make plans for January – we like to pretend I will be well enough, knowing full well the chances of me making it to the bathroom unaided become the highlight of my day.

BUT – like you I can’t simply lie back on my pillows and hope someone else will fight for me. That’s not fair because I’m asking other sick and disabled people to do it for me.

There are two massive scary things in the new PIP (Personal Independence Payment) proposals

2 people have written about the 20 metre moving around criteria better than I ever could:

Read them here

 Jane Young Well over 100,000 to lose Motability

Spoonydoc  PIP - A mobile disaster

Secondly the reliably, repeatedly, safely and timely emphasis has not gone into the regulations – which means they are not legally binding and if anyone had to appeal its could not be used as a point of law to show the decision was not fairly made.

The DWP have said it’s inherent and will be in the guidance, but well we know how easy it is to change policy.

The PIP proposals and criteria have to be agreed by parliament – it’s likely to happen in January – so we don’t have much time.

 If you havent read the governments ideas for Personal Independence Payment - that will replace DLA you can read it here PIP Thresholds and asessment criteria

So what can WE do?

We can show our MPs just how short a distance 20 metres is – I bet Esther Mcvey and her DWP cronies are relying on MP’s and the general public not having a clue how short that distance really is and far from promoting independence it will take it away.

Send your MP an E-card before Friday

Make sure the image is embedded in the email - not an attachment - it will have more imact and many MPs wont open attachments

Here’s how

Use one of these images: (right click and press save as )

Or

with the wording -  

Please make my Christmas and do 2 things in January

Don’t vote to take my independence away – Insist the DWP go back to using the threshold criteria:
Cannot walk more than 50 Metres
Can walk 50 metres but no more than 200 Metres
Can walk more than 200 Metres 
*or to use DWP speak stand and move"

Vote to embed the Reliably, Repeatedly, Safely and Timely into the regulations so I’m not left stranded by the whims of future policy

If you have a few spoons and want to make it personal follow these simple instructions to show your MP local places they should know well to highlight just how appallingly bad the 20 metre criteria is

I’m not techy at all if I can do it so can you J

Step 1 – use google map to look up places in your local area

• Your MP’s constituency office
• Distance from your house to your car
• Distance from your house to the nearest bus stop, shop, GPs, Work etc

We need to show our MPs that having a very short distance means we won’t even make it out of our houses to be independent let alone get to important places.

Step 2 – use this link and follow the instructions http://support.google.com/maps/bin/answer.py?hl=en&answer=1628031

Step 3 – Once you have found your house on the map change the google map view to satellite and zoom in til you have a clear picture like this one – make sure you start your measurement from inside your house.

I spend most of my day in the conservatory – which is why I started from the white bit J  - I have blocked out my road but you don’t have to as your MP needs to know you live there in order to reply.

this is what 20 Metres looks like from my house..20.06M to be exact

As you can see – If I reached my car even taking into account of the repeatedly, reliably, safely and timely policy I would FAIL the 20 metre Criteria and therefore would NOT be entitled to enhanced PIP = no access to the Motability Scheme

 Step 4 when you have got the image – press the Print screen button on your keyboard – its is usually on top row of your keyboard says PrtSc

Step 5 open the paint tool and press paste – the image will be there – I cropped the image – save it as a Jpeg and then you can add it to a email

You have both options – of course you could also

Take a photo from your front door and tell your MP 20M wont allow you to have an independent life and to please insist the DWP go back to using the threshold criteria
Cannot walk more than 50 Metres
Can walk more than 50 metres but not more than 200 Metres
Can walk more than 200 metres
*or to use DWP speak "Stand and Move"

Make it personal and the ask is for them to not Vote to take away our independence

We have 3 Days til the MPs break up for Christmas – ACT NOW please don’t just leave it thinking someone else will act for you

You can find your MP here http://findyourmp.parliament.uk/

Thank you 

Thanks to Debbie Sayers and other spoonies for the image ideas and creating them

Preparing for the winter spoonie style

Part 1 –  Emergency Box and keeping warm

When I was a child living in deepest darkest Dartmoor, we were prepared for winter from candles to tinned spam.  We didn’t have the comforts of 2012.  Somewhere along the the line we have got used to all the mod cons and don’t prepare for winter emergencies in the same way we did then.

Living as a spoonie on a very low income concentrates the mind somewhat – forcecasters are predicting a very very bad winter and while we might scoff, considering we've had some extreme weather so far this year I'm not taking any chances.

  

Practicalities

If you live alone and have a limited network or contact with people then putting in place a "just in case" plan can give you a bit of peace of mind. Even if like me you have a family around you, the thought of a power cut or loss of a vital service could leave you very vulnerable indeed. 

ive tried to cover a few ideas:

Register with your water, gas and electricity suppliers as vulnerable and indeed of a service. This means if there is a power cut you go on their list as in need of essential service.  – for example NPower has a warm response service you can register with

Likewise find out if social services hold a list, make sure someone somewhere knows about you – particularly if you live alone and don’t get a service like social care. Even if you are not religious letting a local church know you exist will mean if there is deep snow, ice or what ever and you are left housebound someone will check on you.

Stock up on medication – speak to your GP about having an extra bit of any viral medications you need just in case – also is you aren’t already register with your local chemist for repeat prescriptions and delivery that way you know you wont run out.

Preparing for power cuts

It might never happen, but id rather be prepared just in case.

We have a winter essentials box (just a plastic box with a lid on it)

Inside are:

Candles & Matches

L.E..D battery lights (little stick on the wall lights - good for stairs)

Head torch - (looks daft but leaves your hands free)

Hand heat pads

Hot water bottle

Flask- small plastic tub of t-bags, uht milk, sugar)

List of emergency phone numbers

Mobile emergency charger

Emergency pack of medication

1^st aid kit

biscuits – everyone needs biscuiuts

Ermergency choclate buttons

portable radio  with batteries

on top of that little lot

we have a small camp cooker and gaz (we live in an all electric house so if the powers off we still need hot food)

 Keeping warm

We would all love to have the heating turned up high but lets face it in austerity Britain living on benefits well below the poverty line isn’t exactly easy. Poor people generally spend far more of their income on energy bills that more well off simply because very often the house they live in is not exactly energy efficient.

A few ideas for staying warm and avoiding the annual nightmare of the winter fuel bill.

Playing the layers game, in my hiking days we were taught its far easier to stay warm and remove layers than it is to have one really thick layer on. Simply because air gets trapped in thin layers and keeps us warmer.

So get those thermal vests out, I have a whole collection of blankets, old fashioned quilts and woollies. My husband has banned me from buying anymore woollen clothing, but making sure you don’t get cold in the 1^st place is the trick

If there is a bit of your body that gets cold easily make sure you layer them up – if my backside gets cold that’s it only the body heat of a hunky naked man will warm me up* :)

Follow the advice – the less you move the colder you get, even if like me that is bloody hard in the winter I do move regularly just gentle stretches, potter about slowly will push blood about your body, raise your temp and keep you warmer.

Sorry if this is teaching granny to suck eggs, but I see it time and time again people getting sicker and sicker because of the cold

Good hydration – not drinking enough can also encourage you to be cold, your body has to use more energy hydrating your cells to do this it takes blood away from your extremities. Drink enough fluid and your cells stay plump and your body doesn’t go into emergency mode8 (of course this could be hokum im no doctor but it makes sense in my world)

Are you on the best energy tarrif?

Have you looked to see if your entitled to help?

Contacting the energy trust for help and advice is a good place to start – they have information about grants and schemes to help http://www.energysavingtrust.org.uk/

Check your on the right tariff

If you get income based benefits ESA, JSA or still on IB then you might qualify for your energy suppliers social tariff check it out or whether you can get a discount on your energy bill.

Frugal Ideas:

Trying to make sure the heat you do have stays inside – if your doors don’t fit and drafts whistle about one very simple idea is draft excluders. Below is the frugal way of making them.

Frugal draft excluder – no sewing required honest. Takes 2 – 3 minutes to make total cost £0.00

1 old pillow case or length of fabric, even an old pair of trousers will do

pair of tights

news paper

some ribbon or string

things you will need

scrunch up some news paper If don’t have newspaper then use old carrier bags – not into tight balls leave a big of give, stuff one leg of the tights with your newspaper balls so evenly packed. 

I used plastic bags

put the filled tube inside the pillow case, or square of fabric and tie off the end with the ribbon or bit of old string. 

the finished thing

If you’re a bit crafty you can sew the ends, and make them all jazzy

excluding some drafts

 It’s a very cheap way of doing it, if you have the synthetic filler from an old pillow that works just as well.  Actually its pretty much free as you just use stuff you have at home.

Hunt around charity shops and ebay for think winter curtains, you’d be surprised how much heat you loose from windows and your front door.

In part 2 we will look at frugal ideas for stocking up for food cupboard in case you cant get out and simple recipe ideas that will warm your cockles over the winter

When I.....

1. Sort out a new internet package
2. Finally get our old house on the market
3. Stop doing 400 mile round trips ooop north
4. finish unpacking boxes
5. put up curtains
6. buy a new bed
7. buy a sofa
8. buy a table
9. changed my name officially
10. Informed insurance companies etc of name and location change
11. register with a new GP - Oh the horro of that thought
12. discovered where I packed my winter woolies

Then I can fall over and actually enjoy the start to married life just before the winter hibernation begins and the usual 3 - 4 months of Fibro/M.E & S.A.D  hell begins..Joy

Still our rented house looks more like a home, LM is not so much happy in his new job he is postively joyous and bounces about like a 2 year old on a diet of skittles and coca cola

so when im all done I can finally think abut settling in, updating my corner of blogsville more and srat a new project ive been brewing for months..

Ps the wedding was amazing..and i had 2 whole days of endorphin induced energy..was like pre-illness and rather than wish for those days again i simply enjoyed every dam moment of having them

Getting ready for moving day

muscle twitchingly
Head poundingly
joint achingly
Tired

eyes drooping
back aching
world weary
soul sappingly
Stressed

mind meandering
crushingling confused
foggyily forgetfully
Faitugued

deadlines loom
detrimental to spoons
dogged determination
to get to the end of the packing....

Planning my wedding - Spoonie Style Pt2

 * As I have no idea how to have part 1 show before this one read it here  Wedding Plan Part 1


They say timing is everything well in the case of a Spoonie style wedding it is, along with a healthy does of realism..

As much as id like to swim along in a sea of ecstasy dreaming of a whole day where i am simply filled with the elixir of love, and will awake at dawn refreshed and virginal* ready to marry my one true love. The reality is something very different..I can almost here Barabra Cartland turning in her grave as i type..While of course it will be romantic and lovely it will also still have fibro in it..

Keeping in mind that:

• I will get fatigued during the day
• I will need to sit down 
• I will need a rest at some point
• I will try to over do it
• I will ignore all my best intentions on the day

Keeping all of those things in mind, I have planned around them so I can at least mitigate the parts that will have the potential to ruin our day..I have to remember If i push it too hard then LM has to deal with it too..

Type of day you want 

That of course is personal choice,  we considered the following:

• Morning ceremony followed by lunch - No evening reception
• Full on sheebang morning ceremony, afternoon and evening reception
• late Afternoon ceremony - evening reception
• Eloping

It might seem odd to do this, and of course finances, how big or small your family is, how many friends you have etc - those are important. BUT before you even go there put you at the heart of this - by you I mean both of you. Forget for a moment all the flim flam of other peoples expectations..Everything else hangs off this decision.

Big Tip 1 - step back and write down together what's the most important thing to both of you 

For us besides a lovely cremony and actually getting married. It was having our loved ones and friends share our day. We then worked out the best way to achieve this and make sure i could manage and pace our day. We looked at each type of day and made our decisions with the knowledge of what we wanted.

I cannot emphasise enough that doing this step 1st before anything else helps the rest fall into place because you can stick to your guns if needs be, or be clear with others what you want. 

We decided on an afternoon ceremony, we are getting married at 3pm with my best women instructed that from 12pm no one not even my mother is to just pop in  and chat.

Why? You might ask - well chat costs spoons so by making sure i have down time before hand means im not exhausted before i begin. My two best friends are fabulous but formidable and if i get past them i have 4 others waiting with gaffa tape a ball gag and hand cuffs to ensure  I REST!!!

Timings for the day

• Ceremony at 3pm
• Post ceremony drinks and photos - 40 mins max - we have gone for as short turn around as possible to limit the spoon usage and means i dont do too much talking.
• Sit down for dinner at 4pm (ish) -this allows me to time my tea time drugs for 6pm
• nap and rest time - post dinner 1 hour 
• I reappear at 7pm (ish)
• Disco and evening Reception beings at 7.30 pm 
• 1st Dance
• Ignore all common sense have a glass of wine and dance beyond allotted spoons

Top Tip 2 Make a list of  a few really important things you want and stick to those - share your theme and accept offers of help.

Ceremony

You might not think there is much to think about here besides music, readings and has the best man got the rings!  However, if like me walking very far unaided is hard, or the dreaded standing for more than a minute or two is no go then the mechanics of the ceremony needs planing too.

Most weddings have the Birde and Groom standing, sitting, standing sitting and standing again etc - for me that would be a night mare. So we have already thought about it to make sure I do as little of the jack-in-a-box act as possible

Our Ceremony plan

I walk in on the arm of my Best Friend aka Mrs Woman
Smile as I know LM will be at this point crying - he cries at DIY SOS
Give him a hug and sit down - Our celebrant (we are having a humanist ceremony) will say hello and throughout the readings and intro we will remain seated.

Only when we make our vows will be stand up - if the room could take it I would have the chairs arranged in such a way we were in the middle seen by everyone and not needing to stand so its my compromise.

I will be standing for no more than 2 or 3 mins and if its too much then LM will just have to go down on one knee and slip my ring on my finger that way.

After the Ceremony 

As you can see we have thought about limiting the amount of time I have to chat to lots of people, have made sure i can go and rest after dinner and come back for the dancin. Everyone will be made aware this is the plan - but most of all My Best Women know the plan and I wont be letting anyone down if i slip off for a nap.

 The only person i need to convince of this is me :)

Top Tip 3 - Talk to your venue make sure they are aware of what you need not just what you want. Find out what is the turn around time between ceremony and eating if that's what you want. You dont have to do it in military precision but having a plan prevents misunderstandings on the day.

Top tip 4 - Delegate - Pick one person who you know is organised and will do whats needed that person is your coordinator on the day. Best Bird is mine - she knows exactly what i want and will make it happen. 

Gosh sorry i seem to be doing lots of detail - I hope this is useful, there are lots of wedding planning sites out there but they don't talk about the kind of issues I face. hence this yet again long post..

And i haven't even gushed about my dress..next time I promise and pictures of my shoes - the ones that arnt flat or very sensible and definitely fall into the Non Spoonie Foot Wear Categorie..but I was sensible enough not to go for the 6" red Ruby Slippers I wanted*


*Well if its good enough for Maddona Like a Virgin... 
*I chose our colour theme LM noddeed and pretended to listen
*Only because i couldnt get my hobbit feet in them - common sense had nothing to do with it

Wedding planning Spoonie Style - Pt 1

I get married in less than 2 months, to say im exicited and nervous is an understatement. However, hunting around the Internet for guides to organising a wedding, I'm struck as i often am, that very little information exists out there for a bride that might need to do things a little different and have needs that other brides don't..(I realise men get married too and LM is fully informed on all things..but when i talk colour scheme his eyes begin to glaze over)

Things you just wouldn't think of if you don't live with any kind of impairment, in my case a chronic illness that has the ability to strike at will and no amount of hoping or "resting" will prevent it.

I had to plan and think latterly with some things, this is just my guide to how Ive planned a big wedding for 86 Guests.

Once the excitement and gushing over the ring is over..in our case the engagement also included a little old lady with a dog* shouting at us for daring to stand on the side of a gorgeous Northumberland River (well LM was I was on a bridge overlooking said river) - it turned out later she had dementia and had decided on a wander unknown to her family..which did make it a little better but did somewhat take the shine off his proposal..

Budget - £3K - compared to many weddings its a pretty modest budget.

Finding a Venue

Given our budget we couldn't just turn up to the nearest stately home with rooms and say there you go petal organise it we had to think about stuff so we looked at

1. 3 place wedding (town hall, reception, close by hotel)
2. 2 place wedding (town hall, hotel for reception and sleeping)
3. 1 place wedding (all in hotel)

 A bit like Goldilocks we tried the 1st 2 ideas out for logistics and kept coming back to the simple fact trying to make sure I had enough energy to travel between 3 places, and not end up broken and in bed by the time dinner was served simply wasn't feasible.

I did try to pretend for a while it would be manageable as id found a lovely venue - but having a pretty venue that you fall in love with when the logistics don't work is simply adding pressure and the potential for ruining your day is huge.

Venue: Things to thinks about

• Layout - how far is it between rooms, will you have to walk a long way to get anywhere?
• How many steps does it have?
• How far away are the loos?
• If you use a wheelchair is it accessible?
• How close is your room to the reception?
• How willing are the staff to be flexible to timings?
• Is there a room with no music to retreat to?

after a bit of a panic after loosing out on a couple of venues, and trying to find the right date..we spread out net wider and found a lovely venue in an old coaching inn.

Good Points

• Its lovely with real character and charm as well as being well within budget 
• The reception area is close together no long spoon sapping  walks down long hotel corridors
• Its a ground floor venue - the ceremony room is next to the reception room that's next to loos no steps and enough space for Maude the wheelchair if i need it
• The bar area is attached to the reception space again no steps or long walks. 
• We have exclusive use of a downstairs bar so if the music is too much i can retreat but still be with guests
• The staff have been very flexible with our requests* 
• We have booked all the rooms the hotel has for our guests

Compromise Point
 I wont say negative as i don't think they are but unless you have a massive budget   you end up compromising somewhere

• No lift to our rooms - I can manage stairs but when tired that's a struggle..however with the help of LM its just another night of being helped to bed :)
• Tight on space at times so noise levels will hurt after a while - comes to my next point timings 

Yay you have found the perfect spoonie venue and now you can just get on and plan. It's all plain sailing,  you just need to find a dress marry your loved one and its easy right?

Sadly no not really, although its been fun planning and I'm sure I'm not different to many other brides to have to think round things but this is a big fat spoonie wedding.we have to add in nap time and think about how to manage a  whole day of talking, standing, laughing and generally being sociable with lots of people when my usual day is me my lap top and I, and even when i am out more than 5 people and a couple of hours can leave me so exhausted LM gives me the look and decides its time to go home eeeppp!!!

The 5 P's of planning

Prior Preparation Prevents Poor Performance.. there is another version but I'm be being a lady dontcha know. In other words be honest with yourself, and if you cant be make sure you have best women like mine that between them declare...

"Now who is going to manage Beth on the day" - lol i was both amused and  apart of me was saying but but but i will im a growd up..however im also a spoonie and think i can do all this stuff when i cant.

Ive realised this has turned into an epic blog and ive got as far as the venue..so perhaps this will be a series of blogs over the next week

 Episode 2 will see the bride work out the timings for the big day and find a dress
 Episode 3 will see LM worrying about how the bride will get through the day..Gin of course!


* LM pointed out that i needed a comma as it looks like the dog was shouting at us rather than the old lady..but for comedic value ive left it alone

Modern day witch hunts

"Freedom of speech is not a white flag to get out of being responsible for one's words"

How very true, I am both saddened and angry about the increase in Internet "trolling" the minute a story is published in any paper from the Daily Mail to the Guardian. About the hardship and difficulties people are facing in the name of Austerity, a little bit of hope dies as the trolls come like a pack of dogs at the smell of blood.

Internet Trolls are not new and this blog post isn't about them per se, but about how the "we are all in it together" mantra, spouted by David Cameron and his coalition government is far more than a sound bite slogan. It is clever spin and places everyone of us in an impossible position of not being able to say hang on this isn't right.

The reality is we make decisions about what is important when it comes to spending our money, we all do it from a small child holding their grubby 10 pence deciding on what penny chews to buy*  to the government with its much larger penny clutched in its exceedingly grubby hand.
The truth is if i asked you to list in order of priorities would you choose to spend

£20 Billion yes that's BILLION pounds on Nuclear submarines* or would you use that money to make sure families with disabled children could have access to the equipment they need to have a quality of life and not go into debt?

You see its not that the penny jar is totally empty, the government has decided what it thinks is important. Its still spending money but with clever spin and the way stories are presents, people don't hear about all the other things it is buying from Nuclear Subs to millions of pounds on research companies 

I know what i choose - and that's the rub the government have been dishonest we all know that yet we cant argue about the need for some reform and some cuts and everyone will lobby for their own particular cause.

But when you read the comments on these stories, the bigoted hate filled rants, about benefit scroungers, how dare they talk about having to cut more when we are all being hit and in this together i am reminded just how well the government have spun it how we are in a state of such fear and anger bordering on mass hysteria we step ever closer to a modern day witch trial. 

Think I'm wrong look back at every time in history where poverty, fear, recession and desperation lead to a time of retribution, neighbour versus neighbour pointing the finger so those self same neighbours don't turn on them.

The Pendle Witch Trials
The English Civil War
The French Revolution
The Russian Revolution

will we look back at Age of Austerity and think how could civilised people sit at computers and suggest children should be put in homes, how just because they have less everyone should have less, where people are frightened and scared and those with blinkered views are encouraged  safe in the knowledge its supported however veiled by of one of the most  morally corrupt and oppressive governments this country has ever seen.

Would people say this to the faces of others, i doubt it but if we who believe in a fair society that is about supporting those in need, and not moralising and subjecting vulnerable people to such hate do not challenge and stand up and counter them then we are a poorer society for it.

You might think this doesn't affect you and you carry on with life and choose to say and do nothing. That just keeping your families safe and as long as it doesn't come to your door then its someone elses problem. They say the heart and soul of a society can be seen by the way it treats the sick and poor...
In this age of austerity its a very black heart indeed.

*Im a 70's kid i remember pennie chews

* News about nuclear submarines budget