Monday, 17 December 2012

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

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 )


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

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

Thank you 

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

Wednesday, 28 November 2012

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.

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
1st 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 1st 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

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

Wednesday, 26 September 2012

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

Sunday, 19 August 2012

Getting ready for moving day

muscle twitchingly
Head poundingly
joint achingly

eyes drooping
back aching
world weary
soul sappingly

mind meandering
crushingling confused
foggyily forgetfully

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

Saturday, 14 July 2012

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.


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 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

Friday, 13 July 2012

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 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 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

Thursday, 24 May 2012

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

Thursday, 17 May 2012

"Are you thick or what"?

desperately trying to write as fast as i could to beat the blackboard is an abiding memory for me - no matter how hard i tried i never managed it. I would spend my time in class lost and bewildered hoping the teacher didnt ask me a question.

Miss Foot's class was ok that was for children like me the the slow ones, the ones who couldnt keep up in class. I finally managed to conquer my tens times table there - it took such a long time to understand that 2 x 4 wasnt 6

Even Now just typing this fills me with a sense of shame that I couldn't learn like other children that I was too thick to learn. I would feel so overwhelemed and demoralised when once again my work was lost in a sea of sngry red pen.

Even now 30 years later the cringing misery when my grammar and spelling is corrected, I make a joke of it and say oh im dyxlexic while inside that voice says "are you thick or what"?
I want to say NO im not i clever I am - look at me I have something to say its important. But the memories of the taunts and the sound of that blackboard being moved before ive finshined coping fromt he board haunt me.

Im not sure what promted this post today - perhaps its the feeling that no matter how hard i try, I will always feel slightly excluded unable to articulate my thoughts and that sense of being inferior and not quite intelligent enough to belong with  the clever kids eats away and saps my confidence...

Its my issue i know that, in the 70's there wasnt a test for it you were labelled slow and if you were unlucky put in the class with the other slow kids. The kids whose work was never chosen to be displayed on the walls, the kids other kids teased and picked on...

and now all these years alter just as we thought we had turned a corner a whole other generation will be in my position - the govenrment calls it progress lets target our rescources ont he children who need it most. Kids like me the slow the learn ones, the cant spell for toffee ones will get thrown away like yesterdays news, left behind trying to copy it down before the blackboard moves.

Saturday, 12 May 2012

Is it psychosomatic then?

Today is Fibromyalgia and M.E/CFS awareness day, the day when the people who live with and charities who support try to raise awareness and inform people about these conditions. 

Uk Fibromyalgia    

Today’s post is dedicated to every person who has had a close family member suggest in some way that quite frankly my dear its all in your head. That somehow this debilitating, fluctuating and sometimes progressive illness is just a figment of your imagination and you are an attention seeking lay about who enjoys lying in bed watching Jeremy Kyle whilst eating Ben and Jerry’s ice cream.

We as in the collective society of individuals use language in a way that almost
predisposes us to see things as a battle and if we show any sign of weakness or giving in we somehow have failed. Add a complex condition thrown in with no obvious blood test or physical sign to point to its gets more difficult. People seem to want to “see” something to believe it’s true.

It strikes me we (I'm as guilty of this too) play things down, hide what’s going on, will struggle on to the point of crisis why?

Is in part that as a society we pride independence and value people who over come adversity, our news papers are full of plucky fighters, battling on winning against the odds to defeat their illness and climb the highest peaks, work through the pain carry on, never letting their illness defeat them.

Why on earth do we as people living with these illnesses buy into this crap, who on earth are we protecting?
We want to raise awareness, face book, blogs, twitter, our jumpers will be full of yellow ribbons with black spots on for FMS, Blue for M.E we will spend a day lifting the lid on, exposing the truth and not hiding it for 1 day the other 264 we will say

“Oh I'm just a bit tired” or “Im fine ya know” or even “a bit spoon less” as if that means anything really. We think people won’t want to hear, they will get bored, it’s chronic so we won’t get a bunch of flowers and the get well soon cards will be faded and forgotten because we won’t get better.

So what how could today change things for the people so ill, frightened and in some cases like the young woman in Denmark threatened with being committed to an asylum on the grounds of insanity for daring to have M.E

We can only change ourselves and start being truthful, I don’t mean we moan and whinge every five minutes but we stop playing the dam game. “I must carry on and do everything I did before in public while sobbing and seeking support in private one”

 Today for me is about not only reaching out to others but to learning to draw a line and educate myself and other people – if you really want to raise awareness today then change one thing – make a decision to draw the line under dismissing your own illness and passing it off as “Just a bit tired” tell the truth. I know it’s hard, and you want to show the world your best face, because like I said recently you can cling to the idea of one day you will recover and pick up your life as it was.

If you know someone who says I thought I might run a marathon and raise money for charity ask them to run for M.E or Fibromyalgia to research it better and find a cure.

Have a card with a link on it and when people ask give it to them to go read up

Seek some help if you are stuck in a cycle of boom and bust where you push yourself to do too much and then wonder why you make your symptoms worse.

But above all change your language, catch yourself when you say things about not giving in, only asking for help in a crisis, that somehow equating living with an illness that by its nature is unpredictable is just an obstacle in your path and if you battle it will somehow make it surmountable.

Perhaps if we all put a little less pressure on ourselves to be heroic, to cram so much into our life we never pause and don’t praise the other just as important qualities in people we will forever be stuck in the ridiculous circle of battling or Giving on what’s wrong with saying NO – this is my life is sometimes good, sometimes bad and I make the best of it.

We don’t because we fear being judged, left alone or abandoned and above all we try to live up to some imaginary standard that those closest to us feel it’s ok to make us feel bad about ourselves. The truth is people only have that power when we give it to them. Take your power back and learn to use it for yourself.

It isn’t easy changing yourself or learning to do things differently, and saying No, or accepting or even saying to other people hang on you don’t have that right to say that to me. But it is possible so do one thing today if you have

M.E or Fibromyalgia tell the truth and challenge you over one thing do it differently – stop yourself from perpetuating the myth it’s just a little bit of tiredness. Be honest not only with others but yourself. Superman and wonder woman are fictional characters for a  reason.

If you know someone with it – hey your reading my blog so you do  follow a link at the top of the page and read up, think about how you say things and do you think in terms of battling on or giving up? 
Dont feel sorry for me, but please if you hear others around you talking like it then challendge them too. I dont mean strangers in the street, but friends, loved ones. think about your langiage and how you use it. 

Why have I talked about language – simply language is powerful and if we continue to use it to diminish and belittle our illnesses into nothing very much how on earth can we expect anyone else to change their opinion and view point.

Change comes from within – change you and you change the world around you 


Tuesday, 1 May 2012

Blue Badge Vigilante's

Today is Blog Against Disablism Day - this is my first attempt at blogging about it, we officially don't accept Racism in this country, there are recent incident of people being arrested for tweeting racist hateful comments, or posting on facebook. But I haven't seen any high profile arrests for similar incidents of hate crime against sick and disabled people.

I'm struck that for many many people me included the fear of being targeted is real and sadly for many its a reality. Especially living with an invisible illness - before i had to use a stick full time i was tutted at and often ignored if i asked to sit in the disabled seats on buses - I was once asked why?

Explaining i couldn't stand up and needed it only elicited scorn and i was so embarrassed i wanted to curl up and cry. No one helped and everyone looked away. It seems so many look away and don't stand up for others, I notice now I do use a stick its easier like i have a badge "see look at me the flowery stick user I'm legit now"

So how did we end up in this state of affairs, hate crime has increased 100,000 disabled people were victims in 2009/10 I found this very helpful video talking about it Disability Hate Crime I don't have time to go into all the whys and wherefores of why this has increased,  the report i read yesterday commissioned by the MS society Fighting Back - Ms Society Report  can perhaps point to one of the many reasons.

One of the saddest and most shocking stat is that 1 in 4 (24%) think disabled people exaggerate their symptoms. I really shouldn't be shocked anymore - but I am. Disablism is alive and well in our modern tolerant society. The report also says that even people aware of MS have similar attitudes

So what has this got to do with a Blue Badge* and an invisible Illness, lots as it happens. I am seeing more and more anecdotal evidence of people fired up about protecting disabled parking spaces for the "real" disabled people* 

You could say its misguided they think they are doing a good thing, yet show such a pathetic lack of understanding and out dated attitudes of what constitutes disability all they are doing at best is isolating people further and at worst perpetuating the myth that you are only disabled if you use a wheelchair and are paralysed in someway. Everyone else it seems is exaggerating and lying.

I wish I could say I'm shocked but I'm not anymore. The fear this kind of behaviours generates is palpable, I only breath a sigh of relief when LM gets my wheelchair out like its a symbol of "see I am disabled and need it" how bloody appalling is that.

I wish I had lots of quotes from people hassled, spat at, pushed, shoved, verbally abused for daring to use a Blue Badge and parking legitimately in a parking spot. Yet this go unchallenged, aided and abetted by society the don't look, don't say culture of not stepping in to protect others is a sad indictment of us.

 "on the way home I popped in to get my little 83 year old friends shopping list and was met on return to my car by a very obnoxious man.. long story but once again - you don't look disabled came into conversation.. this really upset me"

"I have MS and I am 42 sadly I dont look disabled ( well I dont have a wheelchair!) and get shouted at quite a lot! even had an old fella standing in the disabled bay I was trying to park in shouting that I couldnt park there! and recently on leaving asda ( I quite often take my son in his wheelchair there after school!) the girl asked me if I had a parking ticket to be refunded, I said no and she glared at me and told me in no uncertain terms how disgusted she was with my for using his badge! I wasnt it was my badge in the car his is in the kitchen cupboard! dont think she belived me and to be honest sick of having to defend myself from every expert who dont know a thing!"
2 quotes from people with invisible illnesses 
Assumptions are dangerous and make an ass of us - I have learnt to ask for help and 90% of the time i am treated with courtesy and help. There is a vast spectrum of what it means to be disabled or impaired, or sick or struggling or what ever term you choose to use.

Even on here i worry about what to say am I chronically sick? or because my illness will never go away and this half life is as good as it gets am I now disabled? i don't know and perhaps that's some of the problem.
If we don't educate and challenge ourselves and people we know about our illnesses and watch what we say how on earth are we ever going to educate anyone else.

Disablism is both a problem for us and our problem, we are members of society yet I know I'm as guilty as anyone of making assumptions and judgements of people I know nothing about. are you?

*Blue Badge is only awarded to people who either have High Rate Mobility and therefore cant mobilise (walk) more than 50 metres either at all or without severe discomfort and pain or now have a medical to see if they met the criteria.

*Real Disabled people - I have no idea what one is but its something i see all to often from the government to people shouting at vulnerable people in car parks

Monday, 9 April 2012

Sex: A Sick Mans Perspective

 Guest Blog by Mr O

Thank you to Mr O for being my first ever guest blogger, the second blog in what is rapidly turning into a series. I hope you find it as interesting as I have – it raises questions about how we see sexuality by that I mean as a man the notion of masculinity and how that is impacted when chronically sick or disabled.

First things first, I need to clarify two issues here. First, the title. Every time I read it, the thought of a sexual deviant, a dirty perv springs to mind. "A Sick Man" doesn't mean I like wearing washing up gloves, it means I am sick, as in poorly.

Secondly, like Fibrogirl I have an "Invisible Illness" but where she has her Fibromyalgia, I have ME, or Chronic Fatigue Syndrome (because I can never spell the ACTUAL name without Google)

 "Lets Talk About Sex" got me thinking that, from a sick woman’s perspective, things are not too dissimilar to that of a mans. However, things are different enough to warrant a post of its own.

A little about me: I am a 30-something man that has only recently been diagnosed with ME, but I have been ill for 12 years. The last two years have seen a marked decline in my health, and that in itself has had a knock-on affect in all aspects of my life.
My partner and I started dating four years ago, and she was aware of my medical issues then, even before we started dating. I have always been open and honest about my illness.

Sexually, we have always been quite active, but it has always been on the whim of my body (and I am talking pain levels and energy levels, nothing else!) and, being a man, there are certain things that are almost "expected", if even in a gender-specific role, determined by society.

Like Fgirl, the questions are, How do you manage to have a fun sex life when you:

A: Feel like shit most of the time,
B: Have lost your confidence,
C: Feel like no one will ever fancy you again,
D: Feel depressed, fed up, angry, ugly, and/or unattractive

While I can't speak for ALL men, these things apply to me. If walking up and down stairs is a mission, how can I expect to perform in the bedroom?
How can I expect to ACT in an alluring manner, when I look at myself and think "Ugh, really?"

Us men have confidence issues too, and can feel unattractive and ugly. And if I don't feel "sexy" then how can I be expected to get my partner in the mood, let alone enjoy myself. Now compound this will an illness that leaves you in agony, or unable to move properly, or incapable of summing up the energy to stand up..

Like every Agony Aunt in the world has ever said, the main things you need for a fulfilling sex life is time, compassion, understanding, and trust. While this is true for ANY loving relationship, I believe it is more important for those of us with medical issues.

My partner is hugely understanding, very compassionate, and does everything she can to help me out. If we are both in the mood, but I am in too much pain, we will still make love, but it is more her taking control, reading me and my body to pleasure the pair of us. If my pain levels are bearable, then it becomes a case of dealing with the energy levels... Sure, it'd be GREAT to be able to go constantly, all night long, but I know that is not the case with me.

From the "Social" aspect - and I will add now, a view I whole-heartedly think is crap - the man is supposed to be the dominate one in the bedroom, the man is supposed to take the lead, do things his way, and eventually brag to his mates in the pub the following evening.

When you struggle to wash yourself some days, clearly most of that goes out the window. When I am feeling good, I CAN be dominant, I CAN take the lead in the bedroom, and generally when I am feeling semi-normal, that is the case - but if my partner wants to do so, then so be it. However, when my body is not playing fair, she HAS to take over, she HAS to lead and do what she wants to do to me. Pain can take over your sex life, and the act of thrusting in and out - slowly or quickly - can soon get to the point of being too painful to carry on. Energy levels play a similar role, and while I would love to be able to have multi-hour-sex-marathons, the sad reality is my body gives up before getting to the half-marathon point.

I've never been a "Jump On, Have My Way, Jump Off" sort of man, and am actually more than happy for my partner to be satisfied, and be too exhausted to do anything else. Job Well Done, I would say! But as Beth said, the rush of endorphins that come with climax do something to the chemistry of the body that make you feel so good - better than any medication ever can... But there's no way I'd just have sex to reach that point.

We can't "plan" to have sex, not ever. If I am in TOO much pain, or am falling asleep trying to get up the stairs, then generally, we don't do anything. If my body is playing in ANY form though, then it's a case of doing it as per my body.

But, it is difficult, especially if the four points up there are not taken into account... Confidence is the key to everything, and if I feel like a crap lover, am miserable because I've had a hard day, or am feeling very Anti-Me and Angry at how my body is (or is not) functioning, then it does ruin the experience. And of course, a lot of men have issues *ahem* rising to the occasion if they are having any problems with their self-confidence, and this in turn can snowball out of control if they have medical issues.

I am lucky in that I have a very understanding partner, that is willing to take control when I can't.

There is little, if any, useful advice on the internet about people with invisible illnesses enjoying a full sex life, and it's something that needs to change. I am sure there are other men in the same boat as me, and if I can help or offer advice, then so be it.

There will be more posts, I am sure of it :)

Saturday, 7 April 2012

Lets talk about sex

Many years ago I went to a story telling event, the adults only evening was packed..the story teller came on and said Sex Sells  in a chocolaty velvety voice that made me a puddle of desire (I'm a sucker for a sexy voice) we all laughed a little embarrassed like we had been caught doing something naughty.

I'm often surprised that the notion of sex is still a subject we talk about in whispers, its better than it was when i was growing up, but given some of the comments made on twitter a couple of weeks ago when the This Morning programme looked at sex for the over 70's we haven't moved that far still seems to be the territory for the slim young things able to partake in the most energetic of sexploits. We can think taboos have been broken. Have they?

How do you think people would react if the same programme did a piece with two disabled people dressed in PJ's on a bed showing the top 5 sex positions?

Talk about disabled people having sex and suddenly we are in a whole different ball game, the very idea that all of us even the most profoundly disabled, have sexual desire and are able to be aroused is almost no go territory. I'm not as well versed nor able to write as eloquently as other people about this, although i would love to.

 I have always believed good quality non judgemental information is a must for everyone who wants it. That doest wax lyrical about a loving relationship but actually discusses the how not the just the what. I can only talk from my perspective - getting sick in your adult life takes some getting used to. the kind of sex i had before i was ill, is different to how i have it now.

I looked all over the Internet for advice, i even bought a book, to be honest it was rubbish it didn't tell me anything other than be open, talk and laugh together. gee thanks! !!

 I have been intending to write this blog for weeks, in particular in the light of the Channel 4 series UnDateables. It raised many observations for me and questions

Dating or being in a relationship is hard enough but how to do it when you are no longer "fit"?
How to balance having a healthy sexual relationship and be cared for?
What is the best position?
How do you manage to have a fun sex life when you feel:
A: like shit most of the time
B: Have lost your confidence
C: Like no one will ever fancy you again
D: depressed, fed up, angry, ugly, unattractive (delete or tick the ones that apply)

I'm not sure i have the answers myself but I'm at least willing to blog about it, I will write in more detail and take each of the questions in turn.  However as my mum might read this and my poor LM will die of embarrassment heck my best friends read this I wont be giving you a blow by blow account of my sexploits sorry sex might sell but I want to inform not write porn..(well not in this blog anyway)

To be blunt there is very little decent information out there about the practicalities, what sex toys are good when your hands don't work very well, position of the week or how to find sexy underwear when you cant pull your own knickers up.

Sex starts with you, our minds are the biggest and best sex organs we have. If you don't feel sexy and desirable then how on earth can you hope anyone else does. I can almost hear you saying but that's easy to say hard to do. Of course it is.

Fact I'm over weight, short, grey, I have hairy legs and a bush that birds could nest in (I not safe with a fruit knife so razor near my vagina is not an option) I have stretch marks on top of stretch marks, I'm chronically sick, often too knackered to even think about it and i have a hip prone to giving out at the point of shouting hell quite frankly I'm not exactly the in the Samantha Brick School of Beauty..

However I like sex, hell i adore sex..on my own or with LM its great - post coital endorphins are wonderful (even if an hour later i feel like crap my body doesn't distinguish between good adrenalin and bad)

So how did i manage to get myself LM when i was poor, fat, almost 40, single parent and sick - im not sure other than I was Me - funny, sweet, nice, flirty (lost on him) in others words he fell for me..I didn't sit there bemoaning my fate I met him with honestly and a kick ass cleavage.

I cant do this topic justice today in one blog - but i will over the next few weeks attempt to write about having a sex life and even if your single how to think about dating if you want or at least how to find a good sex toy if you have never bought or used one before.

I am willing to go where others may not have been brave or foolhardy enough to go before...look away now mum :)

Thursday, 26 January 2012

The world from my bed...

How does the song go - its been seven hours and fifteen days since you took your love from me.. In the same vein fibro its been seven hours and 4 days since you took my spoons away.

After a lovely if slightly busy weekend seeing friends and a wedding venue, I admit using all the energy having a "life" would have the inevitable cost I just didn't quite expect it to land me in bed since Sunday evening.

Its a curious thing the fatigue that is very common with fibro, bone weary exhaustion that no matter how much you rest it doest go away when your spoon drawer is empty. You'd think sleep would be on the horizon, sadly not the case - as soon as its bed time and I'm feeling even more body decides its time to release all the pain its stored for the day, and my brain goes hot and jingly leaving me unable to sleep for more than a couple of  hours 1 thing feeds the other and so it goes..there is more to it, the muscle spasm, not being able to concentrate very well,. talking is a nightmare.

I have never thought about it before, but while i can type away in short bursts the act of conversation becomes impossible - even the simple act of deciding what to have for tea reduces me to a gibbering mess of incoherence or understanding summoning the mental strength to do more than "i don't mind love you choose" is hard.

Its January, cold, miserable and Ive managed to avoid prolonged stints in bed for a few months - yay she says hollowly like its a great achievement. Lovely Man as ever is brilliant, i would be a unkempt hungry woman by now living on cereals - I'm currently banned from using the microwave after scalding my hand with soup my only attempt at fending for myself..resulted in trashed kitchen, him dashing home from work and me narrowly avoiding a trip to A&E - we decided i was better off with a sandwich

Its not all bleak - despite the inability to watch TV, talk, or listen to ill informed people trying to justify cutting the poor adrift without a life raft and assuming it will be ok on radio how does a spoonless wonder like me occupy herself...

Online - I am struck and finally you say she reaches her point, how on earth would I have coped before the interweb. I seriously don't know, and not sure i want to answer it either. Would you be shocked dear reader to know there are probably 10 million people in the Uk from young and old and all shades in between we are everywhere yet nowhere..very often invisible or in denial..It was only when I became chronically sick did i really think about it - despite working with people in the community for years. Im struck now that very rarely did i work with people who were sick or disabled after all where to find them - I could hardly go in to their bedrooms now could I?

The last few weeks galvanised by some brilliant courageous people the "disabled and sick community" have come together, like all people its made up of individuals collectively doing something - the Internet and social media has been embraced and used like never before. many have come out of the shadows and raised their voice. this week Ive been tapping away and collaborating with people i may never meet to use skills i had thought were left behind the day I stopped working - deciphering a consultation document - you might think thats a tad dull but it has energised me in a way I didnt believe possible, i might not be able to make soup safely but i can still do something be useful and have a purpose.

That purpose is to contribute towards the efforts already being made, so people who it really matters to can have their voices heard, can participate and be part of a community they may never physically see. The view from my bed is suddenly bigger and brighter than i thought. I wont be in bed forever and tomorrow this flare may go, hey i might manage to get back to being a sofa person next week. I have places to go and people to see..and some of them are beyond my front door, not just inside my lap top.

**I save energy for the weekend so i can spend quality time with lovely man its the trade off we make sometimes when the spoons are there you use them, because they perish quickly its a little boom and bust.

***This is like the confessions of an ex community worker. I spent a lot of time working hard to ensure those furthest from the labour market had a chance...except I and others missed a trick in reality we talked about poeple lacking skills, and edication as barriers we very rarely talked about people who were sick or disabled. Something id like to change. - perhaps i need 2 blogs not sure

Wednesday, 11 January 2012

Breaking the cycle of depression - well trying to

I intended to be really active on this blog and build up a vibrant and informative collection of information about Fibro - my path of good intentions came to earth with a bump  in late November.

For a variety of reasons, some of it "life stuff" but mostly a recurring and vicious cycle that goes something like this - I convince myself I am feeling better and able to handle a little more. I start off ok and go for it, just as im feeling a little more confident and hopeful BANG I feel under pressure, panic, go into denial, hide, put the im ok mask on (whilst comformt eating, ending up in fibro flair, stop taking care of myself  and generally stop coping) all whilst convincing myself and others (possibly not lovely man) that all is ok.
Its usually my actions not my words that speak volumes - It is often assumed that depression conjours up imagaes of someone being totally unable to function and being mentally unfit to cope in any corcumstance that is not strictly true. I have good and bad days - infact good and bad moments. Im a good actress and can kid myself and others Im ok. Depression is unique to individuals, there are some broad similarities that can come under the heading.

Like i said its my actions that lead up to and include the overwhelming moment i admit how i feel inside - what is actually going on. Im good a medicating my feelings and ignoring the signs so dont notice them - I act out in a way it becomes a game with myself the must not admit its as bad as it is until - with either gentle support or a hit the wall moment when I face the truth.

I have had depression on and off for 20 plus years, I argue it away minimise its importance - "oh I was down" or "I was stressed with work" never really admitting it has had a corrosive affect on me - sometimes I say "I cant cope" but then do little to change it because its the game by saying it out loud i again convince myself that I will get better and it will all gop away and IM FINE

In a way I have been helpless in this - I dont see it coming til its too late, while i talk to my doctor im so busy keeping the mask of coping so firmly in place Im not taken seriously. After all If I dont take it seriously enough then getting help is nigh on impossible. I have been given pills and pretty much sent on my way. The sad joke is that accessing much needed mental health support is so difficult and patchy I dont even consider it as an option.

Added to this is the Taboo that surrounds Depressive Illness - we fear that which we dont understand. The only way to break the cycle to  get to the nub of why and what the triggers are (if there are any) - This is difficult to write about - In part the hiding was about promising to do something but I overstretched myself mentally, the minute I agreed I triggered the fall out and downward spiral began.
The self loathing, fear, panic and anxiety is a horrible place to be. go out and buying chcocolate etc and then hiding the evidence, whilst saying "I dont know why im overwieght i dont eat that much" all of it feeds the illness. You can only change something when you admit its happening and you have no control over it and therefore need help.

I am writing this really because until i address and acknowledge that not only do I have a physical illness that I am working hard to adjust to and live with - I also need to accept that depression plays a significant part in my life. It imapcts fibro just as fibro impacts it.

I am lucky to have my brilliant OH - he said tonight on the phone as i cried at him that WE will tackle it together. The truth though is I wont break this cycle alone, not over night but I can be kind to myself by simply accepting there is a reason the drives it.

I have a few things to do and a few appologies to make but I will try and catch myself when I begin to jump in and promise things i may not be well enough to deliver. I feel pretty rubbish right now but trying hard to find my way back to feeling ok.