Sunshine and Drizzle Cake - (Campaign Edit).

I was in pain when I woke up. My hips were throbbing and the Endometriosis ache was surging through my sides. Shifting on my back, I wondered if it was too late to cancel our plans? I couldn't guarantee I wasn't going to be sick again.

My husband peered around the bedroom door, "How are you feeling? If you want to cancel we'd better do it soon..." 

Bright, beautiful sunshine was streaming through the window, and knowing how rare it has been this summer, I responded with, 'No, I'm OK'.

I wanted to be up, out and taking photos of a church we hadn't been to yet. It might seem a strange hobby (especially for an Atheist) but I love taking photos of churches almost as much as I love taking photos of derelict buildings! 

Besides, I knew I needed a break from things. Campaigning can take over your life if you let it, and I’d recently began to realise that that is exactly what was happening to me.

Another day of dealing with the problems and pain this government was causing, and I’d end up in tears. Sometimes the very thought of it made (and makes) me feel tired.

It was my husband who made me stop and think. He said, ‘you are entitled to a life you know. You’ve spent every day fighting against this government, and whether you realise it or not, they’ve already taken part of your life away – because it’s all about the fight now’.  

Something jolted in me, and I realised he was right. Since we started ‘Radical Spirit Radio’ on top of all the other campaigning as well, I had let it take over. I was at the point where I felt guilty if I took the day off. I think maybe, I’m still there now, but after that conversation, I’m trying to be better.

We have a battle on our hands and it’s a battle that we shouldn’t have to fight. We deal with illness, disability, pain and exhaustion one way or another. If this government had their way, they would make us feel like we don’t deserve a life – but we do. Every single one of us!

We all need a rest sometimes – otherwise we’ll burn out. I want better than that for all of us, and I decided to put myself first.

Churches and the graveyards that surround them are special to me. It's the architecture, the history, but most importantly it's the peace and the stillness. There is a calming effect whether you believe in 'anything else' or not. 

Churches rarely change so the feeling of timelessness is another thing that attracts me. Imagine all those people for all those generations, that have pushed open that heavy door...

I didn't bother with breakfast - I rarely do. The 'Endo' makes me feel to sick in the mornings. Instead I swallowed a painkiller and sipped a cup of tea. Tea is my 'starter fuel' and feeling sick or not, I find I don't function well without it!

Marian, (my husband's sister) arrived and gave me a hug. We watched our husband's load my wheelchair into the back of their new car. "I hope it fits" she said, smiling at me, "Me too" I replied as another pain shot through my hip and down to my toes.

It did.

Mells church, (the church of St Andrew) is especially pretty.  I loved the porch with its window, that you can see above the outer door, and the interior is especially ornate, so much detail and unique memorials - one if which was designed by Edwin Lutyens.

The graveyard has several notable burials, perhaps the most notable is Siegfried Sassoon (1886 - 1967) -the war poet and soldier.

With my wheelchair parked beside his grave (the church yard is too bumpy to push the wheelchair over and I definitely was not in a fit state to walk even a little way on my crutches), I wondered about all the things he must have seen. That has to change a person. 

The writer in me wondered about his writing process, and if he had a desk! I don't have one - usually it's the dining room table or my notebook comes to bed with me...  

I shivered a bit as the pain ran through me again...but nothing compared to what people involved in war must experience. I felt lucky.

Mells is quite close to us. It's a beautiful village with old cottages, a post office, pub and a few tea rooms. 

The place is riddled with history, and I believe the nursery rhyme 'Little Jack Horner' has its origins there. The Horner's being local wealthy landowners, and responsible for bringing many 'arty types' to the village.

The sunshine made my pain seem less important, and as I sat on the wooden outdoor chairs of 'The Walled Garden' with the warmth on my back, I knew I'd done the right thing in forcing myself to go out. It is a case of forcing myself sometimes - what with the pain, nausea and depression, it can be easy to just stay at home with my husband and let the days slip by.

The lemon drizzle cake sweet on my tongue, the sunshine, and my husband's hand in mine made me so glad this one hadn't.

A Pigeon Saw Me Naked... (Mini Facebook Status Update)

6.00am


About an hour ago, a pigeon saw me naked. 

It was perched on a rooftop that I can see from the landing window.

I've just walked past again, and it's still there! 

I think maybe it's traumatised.

 ...I would be! 


 ...And now you are too!  


My work here is done. 


Have a lovely day! 

(Image: Google)

In the Event of My Death - (Facebook Status).

Just listening to a programme on Radio 4 about the protection of facebook and social network 'stuff' and what happens in the event of the account holders death.

OK, here's my plan:

In the event of my death, my facebook account will hopefully be kept active. Hubby and family have my 'login details'.

Please keep posting stuff - you know the things I rant about on a regular basis, keep doing it for me! :-P

Leave pictures and messages, just as I do on the Facebook page of a friend that died a few years ago.
  

This is morbid I know, but it has to be said. You know the things I am passionate about, and you know how much disability rights and campaigning means to me. You know how vital it is that the words, thoughts and feelings of disabled people are heard - and how important it is that we be understood better. KEEP DOING IT!

In the event of my funeral:

NO BLACK - just bright colours.

No hymns - or God related passages. I want poems, funny stuff and memories of me.

Funeral Music:

'The Love Inside' - Barbra Streisand
Carpenters songs - (whichever ones. I'll be dead, so not fussed)
'Walking on Sunshine' - Katrina and the waves
'Defying Gravity' - Idina Menzel (last)

(as there will be STRICTLY NO HYMNS - there will be plenty of time for good music).

I'd like pink roses please.

- and lastly, somebody has MY full permission to come to my funeral dressed as 'The Grim Reaper!' (If you get complaints from some of the more 'sensitive' types, tell them I said you could - and it's my funeral, so I make the rules)!

Sincerely,

H xx

Always There - (Poem 2009)

I have lived so long with pain,
It rips and tears at my body,
Sharp and relentless,
I know
It will always be there.

I try to be strong,
I smile as expected,
But inside I'm breaking
Apart.

When you look at me,
All you see
Is the outside,
A shell,
My disability.

I hide the agony
Deep inside,
A body that betrays me,
And it will
Always be there.

But
I am a person just like you,
I laugh and love,
I cry and need,
When I'm cut
I bleed.

I wish it was easy
And wish it would change,
The world still thinks
I'm strange.

Sometimes in darkness,
I want to scream
At tired
Frustration's flame.

And then I want the world to know,
Deep down,
I am the same. 


#helenswriting 

Confessions of a Tea Junkie (Poem - 1997)

Alright, I did it!
Went shopping for teabags at midnight,
If I don't have one in the morning,
I don't feel right.

Forgot to buy the ones
I asked you for,
I was tempted to drain the one
Dropped on the floor!

Alright, I did it!
When we went out,
I wanted to know
If there was a kettle about!

After wandering for hours                                                                           
 I'd built up a thirst,

You didn't need to ask,
If it was tea or shops first!

Alright, I did it!
Deprived of my drug,
I thought about using one
Found in the plug!

You know its been ages,
I am scratchy
And short,
Coming between me
And my tea,
Is a version of sport!                                                                        

 I know I'm terrible,
And I know it's tough,
But if I don't get the hot stuff,
I feel really rough!                                                                             

I know you don't get it,
You can't understand,
Why I'm sitting here,
With shaking hands.

Now we have teabags
After nearly a day,
So Heaven help the person
Who gets in my way!

Slow minutes later,
I'm holding my mug,
Gripping it tightly
Feels like a hug.

Pausing for a moment,
I breathe in the steam,
Those first blissful sips
Feel like a dream.

The result is instant,
 Muscles relax,
My body is sealing,
And mending its cracks.

You can forget chocolate,
And forget a kiss,
I'm ashamed to admit
That my paradise,
Is this!'
  



(Images - 'Google' of course)!

'Prove It!' - Thousands of People Finally Wake Up to Challenge Duncan Smith

A petition urging Iain Duncan Smith to prove his smug comment that he could live on just £53 per week has become one of the fasted ever growing petitions. At the time of this blog it has seen over 300,000 signatures.
Such was the strength of feeling against Iain Duncan Smith’s comments, the petition took off like a rocket, and the signatures are still rising. I am not surprised.

On the ‘Today’ programme, prior to the creation of the petition, Mr Duncan Smith was confronted by a working benefit claimant who stated that since his benefits were cut, he now has only £53 a week to live on.
John Humphries then asked the minister the question we all wanted answered, ‘Could you live on £53 a week? By the way, £53 pounds a week works out at about £7.50 each day.
Mr Duncan Smith quickly replied ‘if I had to, I would’. ‘Go on then’ I thought.

Evidently, I wasn’t the only one!

In their thousands people have signed a petition challenging Mr Duncan Smith to put his money where his mouth is, and do just that.

It is the fastest rising petition on ‘Change.org’ to date, and when I proudly signed it yesterday evening, 60,000 people had done it before me.

Do I think he’ll do it? No, I don’t think he’ll have the guts. In fact, as I type this up, I have just discovered that the man himself has dismissed the petition as ‘a stunt!’ – He wishes! We are deadly serious actually. There is no ‘stunt’ about it!

I guess doing something like that wouldn’t really teach him anything anyway. It’s a bit different when you know you can go back to your millions at the end of it, but I’d still like to see him try!
In case you are wondering, Mr Duncan Smith earns £1,581.02 a week, which equals £225 a day after tax, and his wife Betsy is from a multi millionaire aristocratic family.

I doubt Mr Duncan Smith, and most other cabinet ministers, could even understand the concept of budgeting with such small amounts of money, never mind the anxiety and hardship caused by wondering how you will feed your family – and pay for everything else as well.

If he did understand he wouldn’t have said it, and he definitely wouldn’t expect anyone to do it! It doesn’t take a maths genius to work that out. Despite what the minister says it isn’t really possible – not without a great deal of struggle anyway.

We know that food costs have gone up, heating, petrol – the entire cost of living. In fact even on the barest essentials, it is nigh on impossible. Where is the ability to have any sort of life?
Now we come to what I think is the crux of the problem.
The idea that a bunch of elitist, millionaire and multi millionaire ‘career politicians’ are qualified to make decisions which affect ‘everyday’ people. It’s ridiculous!

I doubt many of them have any idea what things actually cost because they’ve never had to worry about it. After all, I read they get a £200 a week allowance for groceries alone.
They live in an entirely different world, where reality, it seems to me, doesn’t gets a look in!

Why are we letting these people make decisions for us?

We need people in parliament who have lived a ‘real’ life, and at least have some idea of what it’s like to struggle, not people who think the poorest and most vulnerable in society are lazy ‘scroungers’ who just need to work harder!

Despite what the government says, the fact is that in an ever expanding number of cases people need benefits to top up their income.

When wages are so low and there aren’t enough jobs (even for those who are able to work) benefits are a necessity, not a luxury – and definitely not a lifestyle choice.

Mr Duncan Smith’s words and the ‘scrounger’ rhetoric surrounding benefit claimants as a whole is harmful, callous, cruel, and based on doctored figures.

Disabled people like me ‘work hard’ to get through the day against limitations and heartbreak no one can imagine.We need benefits to survive. It’s not a choice, and it’s not a choice for those with jobs that still need benefits to top up their income.
Working hard isn’t always possible, and even when it is (as this case proves), it does not always leave you with enough money to pay the bills.

Personally, I’d like to see Mr Duncan Smith live on £53 a week for a year or more, although I know it’s not realistic to think that he will.
 He should be put in a situation where relying on his money and privileges is simply not possible. I think it is the only way he will truly understand the ridiculousness of his words.

If one good thing has come out of this situation over the last couple of days though, is that it has woken up the anger of a growing number of people. People who have finally come to realise that there is no ‘skiver’ vs ‘striver', only the rich vs everyone else.
Campaigners have tried for well over a year to make people realise how out of touch, unthinking and cruel this government are to the most vulnerable in society.

What’s more it comes from Iain Duncan Smith’s own words. If you ask me, he clearly has no clue! I am hoping that comments such as his will prompt people to look deeper into what’s really going on under their noses.

Thank you Mr Duncan Smith for motivating people and making them challenge you, when we struggled to do so.

Long may it continue!

The 'Somerset Guardian' Gives Me Space to Tell the Truth - Again.

'The Somerset Guardian' (our local paper) allows me space to tell the truth - again.

I sent my 'Paralympic Legacy' article (which you can find in an earlier post on this blog), to the 'letters' page, after it was initially rejected by the editor.

It was a nice surprise for me, a week later, to find it on page 11.The 'death stats' which came from the DWP itself (via Freedom of Information request) had been removed, but other than that, it was pretty much as I'd written it.

I felt very happy to have been given another chance to get our message out. I will take any I can get.

You'll find a link to the article below:


http://www.thisissomerset.co.uk/Disabled-people-need-real-Paralympic-legacy/story-18413296-detail/story.html#axzz2NWe8KvSK