Wednesday, 27 August 2014

Is this life in the present?

I haven't written a blog for some time and have stayed away from the subject of social security for my own sanity recently. 
However saying that I have still been reading/listening to what's happening and found its impossible not to know what's going on around me and to this once great countries people.
More and more I am reading of people going hungry due to failures in the social security system ( I refuse to call them benefits as they are clearly not of benefit to anyone) 
Vulnerable people are not receiving sufficient and in some cases any money to enable them to feed themselves or their family.
I read this morning of a woman who was made to feel so ashamed when she asked a council worker for a food bank referral that she never approached them again and now eats so infrequently she has already lost a stone and a half!
This isnt new news to me anymore, it's becoming more and more common- children happy to go back to school as they will get 'fed' there, mothers going without sustenance themselves so their children can eat, people dying through lack of nutrition and on it goes.
Want proof that this is the case?
Think I am scaremongering as we are so often accused of doing by this government?
Read any of the social network sites that have come about these last few years to get the true picture- ATOS miracles is a good place to start. It's not 'telling stories to shock' or seeking to be 'in your face' it relates accounts of real people suffering real hardship and deals in facts not fiction.
Why is this happening?
Why are people going hungry in this day and age?
It seems to me it's a result of and progression of this governments need to deny that sickness and disability exist.
You can't be disabled, you can't possibly be sick, you're malingering, you're not trying hard enough, you're scrounging and so on with all the rhetoric that has been thrown at this group of people for the last few years.
They have tried making the system for support so difficult, damn nigh impossible to get financial assistance but still some of us managed to get 'some help' 
They have tried to turn others against this group of people, headlining in most papers the damage and cost of us and waiting for the hatred to drive us out of the system or even out of existence. But still the good people in society fought on, food banks sprung up and even though they were smeared and discredited they continued helping where they could.
So now it's starvation? Now it's being unable to get to hospitals etc for medical help? Now it's shaming the very people who need help into not going to ask for that help and if they are daring/desperate enough to ask then shaming them some more so they go away, maybe this time for good as death is becoming a real possibility through lack of medical help and starvation. 
Can I be talking about this country? Surely not!
Yes I am and I am disgusted, angry and immeasurably sad at what we have become.

Friday, 11 April 2014

Is this me now?


When you look at me now what do you see?
A face lined with pain and stress and goodness 
The fight of days gone and the now and the might be
Or just a face?
When you look at me now what do you see?
The hands that shake and split and sores and bent and spent
The clasp or warmth to hold so bold
Or just hands?
When you look at me now what do you see?
The body so still that aches and curves, reserves, deserves
Leaning here and there and everywhere
Or just a body?
When you look at me now what do you see?
The legs that could walk for a day given way adorned in grey
The odd wobble, hobble or toddle
Or just legs?
When you look at me now what do you see?
Do you see me as I am as I was as I may be this me really
My heart and my soul dark as coal light as air
Or just me?

I wrote this a few months back after thinking as I often do about who I am now, what role I play in my family and in life now and wondering what people see when they look at me or think about me now, if of course they think of me at all.
It wasn't and isn't meant to be pitying or defeating but an honest wish to know if people see beyond the medical condition that has caused these changes to the me that still resides within the body.
Anyway maybe partly this was brought about by the changes that have been happening recently to my body..........
As those of you that have reasonable contact with me through the social media will be aware (possibly if you have caught one of my not so prolific messages these days) the consultants- rheumatology and dermatology have concluded that we have come to a grinding standstill in being able to slow down the disease itself after many years of trying everything they have thrown at me it was time to be realistic and stop putting my body through such trials purely so they could feel they were 'doing something'
With this in mind our thoughts turned to longer term pain management, this was to be handled by my GP.
My GP is lovely, approachable and ONLY THERE 2 DAYS A WEEK.
 Trying to get to see her is a nightmare and I was sure it was her I needed to see as three years ago I had tried to change from The maximum dose tramadol I had been on for years to matrifen patches, at that time my GP was on maternity leave and I saw 4 doctors in 5 weeks who all said different things and the change never happened, it was a complete disaster so this time I wanted/needed consistency whilst changing drugs.
So my journey began....
Start patches, reduce tramadol....week 1
Ring GP with progress update
Double strength of patches, stop tramadol.....week 2
Start pacing the floor at night with horrific withdrawal from Tramadol
Panic slightly about lack of sleep
Ring GP with update
Take low dose amitriptyline for withdrawal and to settle at night
Pace floor at night with horrific withdrawal from tramadol
In desperation start taking 1 tramadol at night 
By now I am getting one nights sleep in every three to four nights.....not good
Hubby is learning to avoid me and even Molly and Bobcat seem to watch to see if I stay in bed at night or am playing at being a night owl.
Isn't it funny that when you are awake it is really really annoying to have others sleeping? 
I tried very hard not to wake Trevor every time I got in/out of bed although due to my joints etc that in itself is quite a feat but I did try not to push. Kick, roll onto him honestly I did :-)
Also have you realised that 3 o'clock in the morning is vastly different to 3 o'clock in the afternoon?basically it's boring! 
No one is about and there really isn't very much to take your mind off what your body is doing and it's hard to distract yourself, I mean there's only so many times you can try to count the pretty lights on the garden fence, and goodness me have you noticed just how much noise you make trying to move around quietly in the middle of the night?
As my GP only works two days a week you usually have about a three week wait to get an appointment with her so she has taken to asking me to ring her instead of going to see her when she wants a progress update and that's what I did today.
Latest plan and believe me everything I can cross is crossed (with my hands etc it's no mean feat)for success this time, stop amitriptyline as it's doing nothing and let's try diazepam low dose for short while to get beyond the tramadol withdrawal ..........here's hoping eh?
Oh and the point of all this?
Well the patches are working well for me, would be better if they would stay on of course but that's another story or maybe my next blog (The inventive ways we have tried to keep patches stuck to me) sounds good hhhmmmm? 


Thursday, 13 March 2014

And where have you been?

Hello I have taken a short break from blogging, also you won't have seen much of me on Twitter and only the occasional update on Facebook, why is this?
I didn't feel I had an awful lot to write about recently, but life doesn't stand still does it? 
So what have I been up to?
My health continues to deteriorate at a speed that is worrying, New symptoms are appearing and having to be coped with in my own way. 
My way of coping is  
1) can I do anything about it?
2) can my GP do anything about it?
3) can I ignore it?
The answer to 1 and 2 seem to be no most of the time, I thought the answer to 3 was a yes until recently, I have realised my body will just stop if I continue to ignore what's happening, it's a little like hitting a brick wall, you're walking along quite happily and then BANG......
I can't climb over the wall, I certainly can't tunnel under it, all I can do is lay down for an hour or so and hope that a few of the bricks loosen enough for me to push through, so far that appears to be working!

I feel like I've been through another period of acceptance where this disease is concerned, as much as you try not to and convince yourself that you would just cope of course we all live in hope that something will be found or come along that will make the condition easier or maybe even stop it in its tracks but  a few weeks ago I had to accept that that just wasn't going to happen for me.
I had to make the decision on the advice of my consultant that the drug that was my last chance of slowing this disease down was not going to be suitable for me.
After months of two consultants and my GP saying I couldn't have this drug and a third consultant saying I could have it we weighed up the pros and cons and came to the decision that the risk really wasn't worth it.
How do you cope when it looks like your ( last chance ) has gone?
I used brackets as I am a firm believer in never say never.
Well if you're like me you go for a time to lick your wounds, come to terms with it, scream at the world a little and then you get on with it.
And so that's where I am healthwise ...............getting on with it.

Of course the world and life goes on doesn't it?
And so it is here, family come round, friends call in, Time passes and life goes on.
If anything far from slowing down recently life has picked up a pace, in the past couple of months we have celebrated our 40th wedding anniversary and Saturday just gone was my mums 80th birthday!
This we celebrated by having family at our house and a 'small' birthday tea.
I use the word 'small' advisedly as with our family now we numbered 40 on Saturday.
thankfully the weather was kind to us and we were able to open the doors and use the garden as well as the house much to hubby's  joy as he led small groups around his beloved plot showing them what he has achieved in the time we have been here.
 He has every right to be proud the garden is looking lovely as spring is encouraging plants to push their way through.
His only bugbear was the usage of the small summerhouse (bus shelter for those of you who remember him building it) at the end of the garden, his end it has to be said.
He lovingly prepared it ready for Saturday's party, shelving it with high shelves that he said were to put drinks on out of the reach of children, children were not meant to be down near the summer house it was for  smokers to congregate and stand and have drinks and 'man' chats.
I however felt it was ideal to put the children's toy box in and allow the children to play down that end of the garden, even putting a picnic bench down there and allowing them to have their own Food & Drink's on that.
Hubby fought long and hard for the right to use his summer house in the way he felt appropriate, I on the other hand was very diplomatic and decided to take a vote!
He lost!!!!!
The afternoon was a success, everybody enjoyed themselves and mum had a super 80th birthday.

So that is where I am at the moment, plodding on as usual, trying to keep out of mischief and just taking each day as it comes.

Friday, 31 January 2014

New year old me!

Hello
Here I am again pushing my unsteady way In to 2014.
So what's happening in my life?
Not a lot different to what was happening last year to be honest, the fight and the uncertainty goes on with this government and each new thing that I become aware of shocks me that little bit more....
How can we have a government that is so reviled by its own people that it feels the need for armed guards and water cannons to use against us?
How did it get to this? 
Why are we all still talking about it and doing no more than watching? Apathy? The 'it hasn't affected me yet' mentality?
 I truly do despair on a regular basis at what we have become, what we are allowing and what the future may hold.
As to me personally I have fought and continue to fight where I can, I faced and eventually won the ESA battle twice and am now in support group for the foreseeable future, this has taken some stress away from my own situation although with DLA to PIP looming it's likely to be short lived.
I also fought my corner with my local council regarding the hated bedroom tax, I fully expected to be told 'tough luck' but instead I was listened to by a helpful gentleman who told me although government had rushed this hated law through there was actually very little guidance for the councils and many grey areas were now being challenged.
I challenged it on the basis that firstly my house needed the second room for people to stay and care for me when hubby goes away to his dads and also the adaptations that are here specifically for my use. 
More form filling followed my conversation with council and they came down in my favour! 
To say I was surprised would be an understatement as I had only decided to query this after Cameron stood up in parliament and stated quite clearly that disabled people were exempt from the charge which we all know is a lie. 
It's the small (and not so small) victories that keep me going and I have learned to question and challenge anything and everything that seems wrong or unfair, you never know, some you lose but some you may well win.
As to my health these days I have good days when I only drop a few things and days when nothing is safe anywhere near me!
Pain has sadly become an accepted way of life and I count myself lucky on days when only a few of my joints hurt.
 I know pain is your bodies way of telling you that you have pushed too hard or tried to do too much etc, I do try to listen to it I really do but it has a way of shouting at me at the most Inopportune times and so often gets ignored :-)
We have now lived in our new home for 9 months and the difference it has made to me mentally still amazes me, I still find myself looking around and thinking 'is this really mine?' 
It is so perfect and we are so happy here there's that awful small part of me that is waiting for something dreadful to happen and take it away from me!
Why do we do that to ourselves!
We just can't quite believe we are deserving of good things that happen and we can't help ourselves as we worry about it being ruined or taken away from us.
I do try so hard to believe in myself and enjoy the good things when they happen but that little niggling fear is so ingrained in us it's always present.
Weekend just gone Trevor and I celebrated 40 years of marriage, yes our Ruby anniversary. 
Yes we were both children when we got married and our families gave it 6 months, sheer stubbornness and hard work and one hell of a lot of give and take proved them wrong and we are still laughing, loving and arguing our way through life together.
I think the garden we have here has helped our marriage survive the past 9 months as that's where Trevor is to be found most days in sunshine, wind and rain.
He muddles his way through out there and has given us many laughs and I am sure there are many more to come this year. Like the 4 fruit trees he wanted, the advert said ' a mini orchard' which Trevor read as 'mini dwarf trees' only to find he now has 4 fruit trees already about 5' high that should be planted 10' apart in a garden that is no where near large enough to do that, but he will sort it out in his own way as he always does. 
And so my friends and readers of my ramblings we are in another year now and we must all push our way through it the best way we can, be kind to each other along the way, laugh as often as possible, cry when you need to and if possible find a shoulder to cry on as we all need that support at times.
Hang in there when times are tough and keep moving forward, one lesson I learned a while back is that nothing lasts forever, it all passes eventually.

Friday, 3 January 2014

Letter to DWP

So today I read that you have started a new war on me and others like me in 6 pilot areas, it's not a new campaign as such, in fact nearly every year you have rolled out the same 'tell on your neighbours, friends and family' farce much to the delight of every person who has a grudge against someone unlucky enough to be reliant on social services.
I do believe you have taken a further step towards the dark side this time with your deliberate targeting of sick/disabled.
'Does the person walk to a car?'
'Have you seen this person hanging out washing?'
'Does your neighbour go to the shops?'
'Did your friend get out of bed this morning?'
Sound silly? 
Of course it does but these are the kind of questions you are encouraging our neighbours friends and family to ask.
And why? 
Because 0.3% of us claiming for disability are not entitled to it? Your figures not mine!
Do we bother you that much? 
Does seeing me potter about on the arm of my husband or being pushed by him in my wheelchair offend you that much?
Does the fact that I am claiming social security to enable me to eat, heat my home and have some semblance of a life offend your sensibilities?
Is this country really not big enough in resources and humanity to allow us both to live in relative safety? 
I could of course start quoting figures for tax avoidance or MPs expenses scandals but I am not a believer in an eye for an eye, more a believer in live and let live.
You however are obviously not, you begrudge sick/disabled the pittance they are paid by social security, you begrudge us enough for heating or eating properly.......
Be honest here now you actually begrudge us LIFE don't you?
But here is the long term forecast for sick/disabled/unemployed/low paid and all the other groups you are and have targeted....
We are banding together against you
We are learning and teaching others what rights we have against you and using them
We are supporting each other to get through this
And get through it we will.
One day in the not too distant future you are going to be answerable for the crimes you have committed against humanity, for the war you continue to wage on the very people you should be supporting.
One day the rest of the population will wake up to the reality of what you are doing and they will no longer buy your lies, exaggerations, blatant demeaning of vulnerable people, when that day comes I hope you have an answer other than 'I was told to do it' because that is just not good enough.
Maybe the day will come when you yourself will be out of a job, injured or sick and you will find yourself on the receiving end of the treatment you have been dishing out.......
Would I turn away if you were to call to me for help?
No I wouldn't because my heart and my conscience wouldn't allow me too and that is what makes us so very different, I am still proud to call myself a human being.

Monday, 25 November 2013

Goodwill to all men

Yes it is that time,of year again when our thoughts turn to family gatherings, 
present buying, decorations, carol singing and if you have religion then to what Christmas means to you.
Children are excited, advent calendars will soon be getting opened and parties and nativity shows taking place in schools up and down the country.
Now stop! 
 Let us imagine a different scene.....
A home with no lights or heat as the utility bills can no longer be met
A home with no food on the table, an empty fridge and larder
A home that is under threat of repossession as the bedroom tax hasn't been paid
Christmas is cancelled in this home!
You may think I am being over dramatic, 
scare mongering, pessimistic but let me tell you this is a status I read on Facebook last night, this is reality for one family who chose to share their pain in one brief status update last night.
It started me thinking how many others will be in this position this Christmas?
How many sick/disabled, unemployed people have cancelled Christmas for themselves and their families this year?
What was heartwarming was the number of offers of help this person received in a short space of time, not from your well off toffs or big businesses but from the very same people I see offering whatever they can whenever they can, people in similar situations to the person in need,
 people who would share their last penny or food or even the only thing they have themselves their hugs and wishes for that person at a time when they need them.
I have seen these same people come time after time to support the one going through the trauma, standing with that person in unity, not pity but understanding.
And I thank god whoever he/she may be that with this world being turned on its head, 
with man being set against man, rich against poor there are still good,kind thoughtful people who remain steadfast in their beliefs that every human being should be treated with respect and kindness and proves this at every opportunity to do so.
This is our first Christmas in our new home. 
The last few years I have not wanted to decorate our former home, 
I had pretty much lost my Christmas spirit.
It had become harder and harder as my medical condition progressed to welcome family and friends into our home, cook for them and celebrate with them. 
I had changed physically and so Christmas had to change too.
We handed Christmas over to our three daughters, it was their time now to take over the family traditions and so from last year we went to one or other of the daughters and the family continued in its usual way to spend Christmas together.
It had changed but through necessity and the changes were right for us all.
The changes some families are facing this Christmas are being forced on them, 
benefits stopped, mistakes made, deliberate sanctions, and so on....
I want to celebrate Christmas this year in our new home,
 I want to put decorations up, I look forward to the family meals and seeing my grandchildren open their presents etc but it is only possible for us because my benefits were sorted out and for now I am able to 'get by'
My children are carrying the main cost of Christmas as we certainly couldn't manage it on benefits so thank goodness we have a close family who are able to do this for us and with us.
What of those who haven't got that choice?
And even more heart wrenching was the article about another death/suicide directly attributed to this welfare war being waged on us all, 
a 53 year old woman has become the latest statistic.
Isn't that an awful way to report the death of a woman? 
Has it become so normal for us to see these reports now that we read them, feel sorry about it and then move on?
After all she wasn't someone I knew personally, 
why should it bother me more than a passing sadness?
It should bother me and you and you, 
it is a needless death,
 a death caused by this cruel governments mistakes, their half baked policies and their apparent unaccountability.
It should bother us all greatly that this is happening in 2013
It should bother us greatly that this is happening in a so called civilised country.
It should bother each and every one of us that this death and many of the other suicides could have been avoided if only we as a society stood up and showed we truly cared!
Where were you all?
Where was I?
Putting up Christmas decorations........

Friday, 8 November 2013

Life is a funny thing

I really shouldn't write blogs on a Friday in the evening after a long day but sometimes my thoughts just scream out to be put down on paper and who am I to refuse?
Life seems to be a huge trek uphill a lot of the time recently what with my health, the problems/battles with the DWP and other niggly little things that when put together turn into major issues.
On the other side of this is the coasting glide down the other side of the hill with the joy of our new home, the friends and family that have helped make it what it is today and the little everyday things that when put together make the sun shine.
One day I feel quite blessed and in high spirits as I appreciate or am reminded of what I have.
One day I feel quite ill, sick to my stomach when I realise how much I have lost.
How can this be?
It seems I go so far up one side of the hill, coast gently down again only to start the climb all over again.
Why? 
Why don't I just settle somewhere maybe half way up?
Am I greedy wanting to feel happiness without this balancing sense of fear and loss?
Is this something we all feel?
Is a sense of loss of things we wanted/had natural as we get older and go through life stages?
Only you can answer that one for yourself as only I can try to understand how and why I continue to feel these emotions on this roller coaster ride that is my everyday life.
If I could scream at a superior being, an entity, a God I would ask if my life was his/her idea of a joke, or was it perhaps a lesson I had to learn and relearn?
We all go through life obtaining things and losing them again or other comparable things that account for our losses such as wealth, possessions, people, employment, positions in life.
You're a daughter and then a mother, maybe a sister, a grandmother, a friend, 
I could write about the losses from every stage of the examples I have written above but we all have or will experience those losses at some stage in our lives won't we?
Should we mourn them? Is it right to miss the positions we held in our families or in our society?
What if your loss is your health?
This of course leads to other losses
Independence
Driving
Employment
Walking
Choice
Sense of self
Usefulness
Such a lot of losses! 
Should we just 'cope' is it ok to be angry? Scared? Angry? Bemused? Angry?
People tell me what a lovely home I now have and I do, it's wonderful, it's everything I could have wanted and more, it's brought peace, it's brought joy and it's brought such fury!!!
Why now? After all the years when I could have lived life in it to the full
Why now? When my health is likely to get worse and more confining
Why now? When I am getting older, too old to fully appreciate it
Why now? Why now?
Is it true that there is a time for everything and everything has it's time?
If it is true maybe this is my time, now, this minute to be just me, the me I am now.
Happiness as a whole complete entity in its own right doesn't truly exist, it is always tinged with sadness, regret and loss..........
But that isn't the end of the story, take it, nurture it, live it, share it and gratefully receive it......

Friday, 18 October 2013

Lost

I feel lost.
Does that sound strange? 
It does even to me but after a few weeks of wondering how I felt and why I felt this way I have decided the primary feeling is one of being lost.
So why do I feel this way? 
You may ask, or you may not but I am going to try to explain it anyway.
Many of you will know that the DWP and their partners in crime ATOS awarded me my ESA support group a few weeks back and have promised to leave me alone now until 2016.
A time for celebration? 
A huge relief?
An easing of the stress?
Yes yes and yes, all of these things but more, an underlying unsettled feeling too, a niggling not quite right feeling, not unhappy by any means but not quite happy either.
Why? 
Why do I still have the dread? 
Because others are still going through the trauma
Others are still facing an uncertain future
Others are still dying whilst awaiting an appeal
Now I am no saint, I can be as selfish as the next person I'm sure,
 I can feel smug because the fight for me for the moment is over.......
NO,  no you see I can't and there is the source of my discontent, my restlessness.
I tried to ignore the stories, the articles, the tweets, I stayed off twitter and Facebook, I wanted to bask in the relief that it was no longer desperate in my own situation.
I covered my ears and my eyes, sang over the cries of others and walked away from 'the troubles'
At least I attempted to but you see that is not me, 
it is not who I am or how I think, feel or behave.
My own health took a turn for the worse with the arrival of ear infections that just wouldn't respond to treatment, this in turn led to the withdrawal of funding for the new medication I was supposed to be trying to slow progression of this disease down.
This then meant trips to the doctors practically weekly for the past few months and I tried really hard to concentrate just on that for the moment.
It wasn't being selfish to look towards my own health and my needs during this time was it?
NO,  no of course it wasn't and yet still this unsettled feeling persisted.
Gradually I allowed the reports to filter back in to my consciousness,
Gradually I heard again the cries of others fighting for their benefits and their lives.
Gradually I saw again the pictures of those that meant sick/disabled harm.
And gradually I again felt the rage, the fear, the hopelessness and the fight return.
You see I can't be all cosy and smug in my safe little world while many many others are in fear, in pain and dying at the hands of this cruel government.
I can't smile and pretend all is well with me while friends are going through the stress I went through.
I can't turn my back and walk away not even for a while
It's not me, it's not in my heart to ignore the battle being faced by others.
Every time I see/hear the latest figures, the latest fiction put out by this government I am consumed with anger. 
Every time I talk to someone going through this unfair system I am consumed with grief for them.
Every death touches me
Every wrong decision enrages me
Every lie told infuriates me.
How can I sit back and not feel, not do, not fight and not care?
How can I celebrate my small victory when so many others are still fighting?
Simple......I can't
Not because I am some sort of activist, not because I enjoy the fight, not because I want attention or any back patting etc....
Because I am human and I care
Do you? 

Wednesday, 2 October 2013

Monday and the DWP

Monday.....start of a new week, same old same old? Body not changed, still won't behave or allow me to do the things I used to do, pain still there every waking (and most nights now sleeping) moment.
So it is Monday, why is this different this week?
I decided to take my courage in both hands and telephone the DWP.
On April 17th I returned my form, photos and consultants letters and other evidence to ATOS as proof that I hadn't been miraculously cured in the year since they had assessed me previously.
I again pointed out what progressive meant and even put in a fact sheet for them on Pustular Psoriasis, palmar plantar pustulosis and psoriatic arthritis, temporal arthritis and koebner phenomenon. 
Yes I have all of the above, lucky me eh?
You would have thought with all this going on I wouldn't have been unduly worried about the result of the re assessment wouldn't you?
Wrong, with all the evidence pointing to ATOS and DWP finding cancer sufferers, ME sufferers, chronic conditions being found fit to work either straight away or in the near future I was petrified.
I waited, weeks passed and nothing, more weeks passed and still no brown envelope telling me my fate.
 It may sound dramatic to say I lived and breathed the fear, stress and tension of watching for the postman and waiting for that decision letter to hit my mat but when you understand the removal of the ESA benefit or placing me in the WRAG group and making me fight them would change the quality of my life you will see how important the 'right' decision was to me.
Why? Simply because we depend on this benefit to survive from week to week, not luxuries or even a great standard of living but it makes the difference between eating and starving so it is dramatic!
I hesitate to say we are dependant on social security as it seems these days to congure up images of lazy, feckless people lying around until noon and then rolling out of bed to sit Infront of a huge tv for the rest of the day, this is of course the image the government and their lapdog press have set out to give people.
The reality is very different for people like me and many others who have been left with no option but to rely on social security. I struggle with my health condition on a daily basis, I have always prided myself on adapting to the changes quite well and still pushing to be as 'normal' as my condition would allow.
Trying to do things, trying to get some enjoyment out of my days and trying to let Trevor (hubby) still keep some of his interests and enjoyments even though he was having now to care for me 24/7 
The reason I am explaining all this in relation to the ESA re assessment is because I realised after a month or so that waiting for this decision letter was changing my behaviour.
I was scared to attempt to do things Incase I was seen as not being sick enough any more
I was scared to be seen out Incase the one day I managed to walk a few feet was the day an ATOS/DWP spy saw me and questioned my ability. 
I was scared to appear too happy Incase that was seen as being fine and not bothered by illness.
I was scared, scared to death of this department that held my future in their hands.
Yes I had all the evidence, yes my condition was known about, yes it is progressive and I had proof from consultants etc I was not going to 'get better' and yet this department had all the power over my well being and I felt I had none.
The stress was enormous, it affected my every day, it caused my condition to flare more than once.
On July 2nd I could stand no more not knowing and I telephoned DWP who told me they had nothing so it must all still be with ATOS.
ATOS informed me that yes they did have it all but they hadn't looked at it yet and did I realise they had 13 weeks grace from the DWP in which to make their decision before passing it back to them.
The telephone call had taken so much effort to make I was left no wiser and shaking and very upset, we really don't count as human beings do we? These people are allowed to treat us with disdain, keep us waiting knowing the anxiety this must cause.
I sat myself down and had a talk with myself, I couldn't go on like this, I was losing the plot, now I knew waiting on the postman was futile for the foreseeable future I had to somehow put this to the back of my mind and carry on with life. 
But with this hanging over your head that is impossible, you read every sorry about what's happened to others in same position, you talk to people going through the same process, how long have you waited? Is this normal now? How are you coping with the not knowing?
It truly is like living under a cloud, a dark cloud that just won't lift. 
The last few weeks I have asked myself the same question 'why don't you ring them again and find out?'
It was a scary prospect, did I want to draw attention to myself? After all the benefit was still being paid to me at the moment so why rock the boat?
What if it still wasn't decided? Would that make it worse knowing they were taking so long to decide?
What if they hadn't even looked at it yet? I know many of DWP offices have horrific backlogs.
I got talking to a few friends on twitter Sunday who were also waiting and felt exactly the same as I did, the worry among us was palpable and one theory that kept coming up was that DWP may be waiting deliberately until the rules change on 28th October, these new rules mean there is no immediate right to appeal, it has to go before the DWP for a second time to see if they will change their mind before it can go to tribunal. No payments whilst this goes on and also no back pay if it turns out they are wrong and the decision gets reversed at appeal. 
How frightening a prospect is that? What on earth are people supposed to survive on?
But Monday morning I decided it was better to talk to someone and find out what the situation was than to carry on stressing and wondering so after several deep breaths I rang DWP......
Next installment next week.......

Ok ok I am joking
I have been kept in the support group and they will not look at me again until July 2016
Apparently this decision was made in July, the letter, the dreaded brown envelope must have gone astray!
The relief, the lifting of the stress and anxiety was instant. I asked for a copy of the decision to be sent out to me as I don't think I will quite believe it until I see it in black and white.
After the lady had sorted out sending me a copy I made her repeat what she had told me once more.
I was in the support group and wouldn't be looked at again until 2016..... Yes that was definitely what she had said, I hadn't dreamed it.
I managed to hang up before I burst Into tears, I have been believed, the evidence has been believed, they should leave me in peace to cope with my medical condition now unless things change.
I feel safer, not entirely safe still as we never know what this government are going to come up with next to make us jump through hoops and make our already difficult lives more difficult but you will understand if for now I celebrate my small victory and have a smile on my face for a while won't you?

Tuesday, 17 September 2013

Life (but not as we know it) under the Condems

I haven't written a blog for a while, really haven't had much to say but every so often a blog cries out to write itself, it's my expression of what's inside me, my outlet perhaps or just me rambling on.
Whatever it is this is my latest offering....
I got to thinking what my life is like under this government, was it better/worse than before?
Did I serve myself a 'self fulfilling prophecy' due to my memories of the last time the Conservatives were in government?
I admit I dreaded the Conservatives getting into power, I do have a long memory and my family did suffer at their hands last time in the early 1990s, having been encouraged to buy our house and work our way to better things we were hit by the last recession.
Hubby is/was a builder, a tradesman who was good at his job and constantly in demand as his reputation was excellent.
I worked my way up through the caring profession studying and attending college/university at the same time to qualify as a Dr of Psychology and a counsellor. 
We had/have 3 daughters who were at the time still going through education.
And then 'bang'!!!!
The building trade was as ever the first to fall......with his work went our home, our security and yes I admit it for a while my sanity wobbled on the very edge.
I refuse to dwell on that time now as of course we did overcome it, we picked ourselves up, brushed ourselves off and started again from scratch.
We got a council home........this is the first thing being denied to people now under this government and the fact we are having to pay for a second bedroom is putting a strain on our finances.
I didn't fall Into the depressive abyss thanks to our brilliant family GP.........this is the second thing being denied to people now under this government, the healthcare just isn't there anymore. I can attest to this as I have tried in vain to see my GP for the last 3 weeks and have a further 3 weeks to wait until an available appointment.
We continued to work both of us and continued to build a comfortable home around us for a good few years although we never could get back to where we had been we were happy with what we had.
I was diagnosed with my medical conditions back in the 80s and although I had to keep adapting what I did and how I did it I continued to work until 4 years ago when the condition had progressed to such an extent work was an impossible dream for me.
A year after I stopped my husband became my full time carer and our lives took another turn.
During the previous recession and the fall of the building trade my husband had to claim benefits for a short time, they aren't great obviously but the DWP and job centre staff were helpful and although we thought 6 weeks was a long time to have to wait for it to be sorted out we didn't realise then how very lucky we were.
We got the benefits we needed and were entitled too......this is the third thing being denied to people now under this government. There is no longer a safety net for those unfortunate enough to lose their job or become sick/disabled. 
We now have to jump through hoops, satisfy ATOS and DWP that we truly are sick/disabled for a meagre amount that it is impossible to live on, you can just about survive if you go without things others may take for granted.
If you are lucky you will only get pointed at in the street and not actually verbally or physically abused for being sick/disabled, you will be labelled a scrounger, skiver, burden and all the other hateful rhetoric this government have been using to attempt to justify their evil policies.
My life has changed to such a huge extent from then to now that I no longer recognise the life I lived or the person that I was back then.
Such huge losses occurred back then the last time the Conservatives governed us I prayed that they would never ever be put in a position where they could harm me or others again, once was more than enough!
This time they have tried to take my home (bedroom tax)
This time they have tried to take my benefits (ATOS & DWP)
This time they have tried to take my health (ATOS and NHS)
They HAVE taken my standard of living
They HAVE taken my sense of security
They HAVE taken so much from me but they will NEVER take my pride in myself and my family for who we are and what we have achieved.
They will NEVER take my belief in what is right and wrong
They will NEVER take my care and love for my fellow human beings 
And they will NEVER destroy me..........how about you?

Thursday, 1 August 2013

There is no benefit to me

I have stayed away from blog writing about the benefits system and all the frightening changes that have taken place and continue to take place, why? 
I found my head and heart just couldn't stand the confusion, frustration and outright pain it is all causing me.
Am I being overly dramatic? 
I don't believe I am when every day seems to bring a new threat to unsettle me, a new fear for my future to cope with and a new set of feelings/emotions that make me want to run and hide.
I have started to avoid twitter as many of my friends on there are feeling/suffering the same and I want to help, 
I really want to do something, anything that will stop this victimisation of the sick/disabled/unemployed but what? 
What can we do?
We have tried petitions, indeed the wowpetition is still ongoing and gathering pace every day and of course I am behind that 100% but it's not helping the here and the now.
We have e mailed/written/spoken to MPs, 
I was constantly in touch with our MP for the first year or so, every time something new was thrown at me, every time I felt fear or confusion or revulsion at a new change, a new idea, a new stick with which to batter us I wrote to him, sent him links, sent him articles but my frustration just grew as he continued to parrot the party line and finally after a particularly odd conversation with him in which he accused  me of 'believing I was the only one who cared' and 'being abusive' to him which I deny vehemently I stopped all contact as the tone had turned distinctly chilly between us.
And so I have retreated, not from the fight for justice, that will never happen, but from the daily/weekly noise making arena, in short I have found myself unable to shout and have Instead worried and fretted and helped others from the sidelines.
Those of you that know me will know we moved house in May, lovely as my new home is the stress and the added expense of moving has brought us to our knees.
Financially now I have an added worry as I know do many of us on benefits of where the next bill payment, shopping , hospital visit money will come from......life of Riley on benefits? Do me a favour!
I now have to find council tax and bedroom tax money every month on top of the escalating food prices, heating etc out of no extra benefits as this government in its wisdom decided we had it too easy!
I have written a few blogs about my medical condition etc so if you're interested please have a read but my condition means I will never be able to return to employment. 
My GP, my consultants and even the ATOS assessor said so 3 years ago,
 I was still placed in the WRAG group by DWP though and not knowing much about this 'new benefit' and not having been on sickness benefits previously I stayed in this group for a year.
Because I had worked for 25+ years I was on contribution based which as we now know means you should be fit to return to work in a year when your entitlement to ESA contribution based just stops!
Unfortunately for me ATOS and DWP were unable to perform that miracle and I wasn't cured after a year,
 Infact after 3 months of fighting with them I was placed in the support group.
I have watched friends and fellow fighters get called back for assessment after assessment and so wasn't all that surprised when a year later they called me for re assessment.
I am still waiting for their judgement three months later, 
when questioned ATOS Informed me they have 13 weeks in Which to look at my paperwork and forward it on to DWP with their recommendation.....
13 weeks of hell, 13 weeks of not knowing if I am going to have to fight again, 13 weeks of not knowing if my benefit will continue to be paid.....
Can this be right? 
Is it right to leave sick/disabled vulnerable people waiting and wondering?
And what of the cost of continually re assessing us?
At first I would read the articles in the papers, watch the programmes on the television but it all seemed so biased against us, where was the balance?
Where was the uproar in the comments from society about how badly these things portrayed us?
Where was justice? 
How could the government keep telling lies and not get stopped, not get challenged, not get shot down in flames?
Groups such as Sparticus and Wowpetition and DPAC and UKuncut and many others put out articles telling the truth, giving a balanced picture, asking questions but they were not given air time or print space.....the government really have got the media in  their pockets.
Time and time again the public buys into it, scroungers, fraudsters, layabouts......
Our voices weren't heard, they were drowned out. 
More voices joined ours, the shouting got louder, more Insistent so the government turned up the volume on their rhetoric......deserving and undeserving people???
The proof of what we are saying is all there, under your noses but no one is looking.
Why? Apathy? I'm alright Jack mentality? 
I wish I knew and I wish you all understood how disheartening, how soul destroying, how very lonely it is when you feel unheard, uncared for by society.
If you're thinking 'gosh this is a self pitying defeatist blog from Penny' then I make no apology for this is how I am being made to feel by a government and a country I used to be proud of.  

Thursday, 18 July 2013

The man shed, a trilogy....part 3

So we left the ~Insipid~ sorry I mean intrepid man of the 〰house〰 shed with a 3/4 complete greenhouse and a painted and partly shelved shed in the last blog, here is a progress update as I know you are all desperate to hear what dizzying heights we have aspired to.
I must start by pointing out that having moved from a flat with only a communal garden hubby had no gardening tools and as he always used the same excuse when asked to do any DIY in the house
'I don't have the tools love' It's reasonable to assume he had no tools of any description.
So problem number one was overcome by borrowing tools, 
for the garden obviously as that's far more important than carrying on with any works to be completed indoors, and in this weather? Perfect for gardening! 
We are now on garden fork number 3 (all borrowed I might add) 
Fork 1) went in the earth with four prongs and came back out with only three! 
Fork 2) went in the earth complete and came back out in two pieces, handle and prongs no longer friends with each other.
By now hubby's long suffering friends were beginning to wonder what he was doing to their tools to cause such devastation but like the good mates they are they continued lending him these fragile things and sat back and waited for the next mishap.
When he got his hands on his mates axe I feared the worst
 'it's ok it's just to chop off a few of these overhanging branches' he reassured me.
I watched from the safety of the living room window as he set to work, he seemed to examine the axe quite thoroughly before he started to hack away at a stubborn bit of bush,
 he aimed at it and took a hefty swing, it hit the branch and then both of us watched as a small black bit flew off the axe into the undergrowth, 
scratching his head hubby tracked it down, a small black rubber cover, obviously intended to protect the blade on the axe lay in his hand 
'oops, i wondered what that was, explains why it didn't seem to be cutting very well i suppose' were the words that came forth as he tried to see if it would still go back on the blade, it did but after being hit so hard it now had a cut through it where the blade rested, 
next to useless now......and useless wasn't moving any time soon!
AJ is a really good friend of ours (yes it is/was his axe) and has 'encouraged' Trevor to do a lot of the things that would still be 'pending' in the house and the garden.
When told about the axe incident he put his head in his hands and shook it gently as if he really couldn't believe anyone would try to use an axe with the safety cover still on it,
 however I am sure he was reassured when Trevor told him it was no longer a problem as the safety cover was on the missing list.
AJ says he enjoys coming here, it offers some light relief after a hard days work or at weekends and he always leaves with a smile on his face, usually put there by the latest of Trevor's escapades.
AJ is a motivator and he rarely leaves a job he starts unless its finished so as you can imagine he is a good fella to have around.
Outside the front of the house was a hedge that had been allowed to run riot and was half way down the lawn and taking over the wall to the detriment of the front window, it had to come out.
They both set to work on this hedge on a Sunday a few weeks back, 
unfortunately it was also hiding brambles and several rose bushes that had somehow entwined with the hedge so it was hard work but bit by bit they removed it, 
section by section I watched the brambles etc being dragged down the alleyway and out the back as the front got cleared.
I wasn't troubled as the branches were dragged through as I knew AJ was doing most of the work supervised (watched) by Trevor, 
I wasn't worried that is until I observed Trevor walk through the alleyway with a length of wire in his hand......
'Wheres that from?' I asked suspiciously 
'Its ok' he reassured me ' it's no longer in use, just as well as I cut through it with the shears, think it was the old tv Ariel' 
He was WRONG!! As we soon discovered when we lost our broadband connection!!
Ok I could be doing him an Injustice here as I can't prove it was his messing about out there or even that it was that particular wire that caused the problem with the broadband but strange how the BT engineer said his machine thingy was reading there was a 'break' in the wire somewhere close to the house eh???  

Trevor decided he wanted to grow tomatoes and runner beans in his greenhouse this year, too late apparently to plant a lot of things and the greenhouse won't really come into its own until next year but a few tomato plants and the runner beans his dad gave him would do to start this year.
So he went to a car boot sale to hunt down some tomato plants, alas to no avail as there wasn't one tomato plant to be seen there. 
He was hugely disappointed and everyone and his wife heard about it.
Consequently as he had made such a fuss he was bought 4 tomato plants by his daughter for Father's Day, 
AJ went to a boot sale and got him 4 tomato plants, another friend bought him a further 4 tomato plants......that will teach him to moan so loudly eh?
The runner beans started out well and he proudly built himself a frame with netting on it for them to climb up, very pleased with himself he planted out the baby plants at the foot of the frame.
It was that very same day that our young grandson came to visit, 
picking up the ball and with a whoop of delight he ran towards the newly planted runner beans shouting 'goal' as he aimed the ball at the netting. 
He managed another three shots before I stopped laughing and his grandad was trying to explain it wasn't a football net.

Well my friends that pretty much brings us up to date with the saga of the new house and garden, there are lots of things I could tell you about the long awaited progress on the house but that is for another blog another time.
Trevor is currently painting the slats that he is going to use to put up a picket fence to separate the general lawned (not yet) child friendly end of the garden from the greenhouse/man shed (his) end of the garden and I wait with interest to see how that pans out. 




Sunday, 26 May 2013

Now I've gone and lost the bucket!

So here is part 2, there shouldn't have been a need for part 2 if it had all gone according to plan but when does life ever go according to plan?
After all the hints, moans and groans and laughter concerning the tasks that had been left unfinished in the house when the love affair with his shed and greenhouse took over hubby set to putting things right this weekend.

Job 1) put the beading round the edges of the hall floor, started off fine, had meant to borrow brothers nail gun but after leaving it here for him to use for the past two weeks his brother had reclaimed it only a few days ago so Trevor set to work with hammer and nails. 
Did a third of the hall and then came to a grinding halt as he complained it was too hard in the tight places to use a hammer, apparently his fingers got in the way more than once. 
I can substantiate that as I heard the yells several times!

Job 2) board the ceiling in the kitchen ✔
Ignoring the language that was coming out of the kitchen I sat and waited for this task to be completed before going out and praising his work.
I was using all my tricks to keep him going I.e ' you're so clever, it looks so much better' etc etc
And it seemed to be working, he wasn't looking longingly up towards his greenhouse half as much as he got stuck in to the kitchen.

Job 3) put in the plinths (getting knowledgable aren't I?) under the kitchen units ✔
And so a workbench, a circular saw, a mitre saw ( showing off now) and several other items were set out in the garden.....great, plug it in....erm the extensions too short, move it all closer to the shed, success.
This wasn't too arduous a task even though the clips snapped and he had to be a little creative to get some of them to stay in place but the funny moment to share is this....
Me..... Are those your slippers under that unit?
Trevor.....yes
Me....don't forget to take them out before you put the plinth on
You don't need two guesses to work out where the slippers were when the kitchen was finished do you?

Job 4) hang the kitchen door.....ALL STOP!!!!
Can't be done without planing the door down to size, where's the planer?
 Trevor doesn't have one but his brother does, 
have to borrow brothers planer, 
can't insist brother rushes straight over to lend us his planer can we? 
That would be just rude so all work has to be halted through lack of the right tools to do the job!

So state of play at the end of Sunday? Half the hall beading done, kitchen ceiling boarded but not plastered yet, plinths on with slippers retrieved from behind one of them, kitchen cupboard door handle on.......
Several more glass panes put in place in the beloved greenhouse, shed sorted out.....hubby happy.

It's bank holiday Monday, daughter and grandson been here all morning, grandson enjoyed sitting in grandads shed with grandad and admired his nearly finished greenhouse, well as much as a two and a half year old can enjoy such things.
Trevor called his brother again to remind him he needed to borrow some tools to complete the jobs indoors.....
Hang about a bit, at 2.30 I had the gumption to ask why Trevor couldn't go and pick the tools up instead of waiting for his obviously busy brother to bring them round?
'Ah well you see he is going to help me put in the final panes of glass In my greenhouse, kill two birds with one stone' proclaimed Trevor very pleased with himself.
Now I get it, the jobs indoors will be done but the greenhouse that is oh so close to his heart needs a helping hand too! Count to 10 Penny 1...2...3...4
Nope 10s not going to be anywhere near enough!

It's five o'clock and Trevor plus his brothers tools are here ready to hang the kitchen door....
Yes he did go and get them when my smile began to look a little strained.
The electric planer is set up and we're off
Once
Twice
Three times 
Four
At this rate Molly we won't have to open the door for you, you will be able to crawl under it!
What is it about a man when he gets his hands on a power tool? Does it make him feel more manly? 
Is it the power thing? 
Can I have a go?.....ok ok, I was joking, I know I am but a mere woman.
Do you think I could kid him the Hoover is a power tool? Didn't think so.....
The door has been in the hole so many times now Molly is looking confused, is there going to be a door there or not?
It fits, now hinges.....he has found one hinge
The air in the shed is turning slightly blue as the second hinge evades capture, apparently if he had sorted his shed out first and put things away tidily he would be able to just place his hands on the things he needed but I, yes me, insisted the house get done before the shed......so shoot me!

I am still counting from earlier, I am up to 3654 so far and counting.....

Hinges found, fixed in place,moved and refixed, door hung......door handles?
OMG, please please let him find these easily, for now we are going to use the ones he took off the old door, why did he take them off? 
Well you see his precious glass for his greenhouse was leaning against the door whilst he lovingly cleaned each pane and the handles may have scratched them!
Back to the shed, yes there's the first one, can I breathe now? 
Wouldn't you just know it, second one is nowhere to be found.
He remembers seeing it kicking around in the garden, when exactly and where it may be now is a complete mystery and we have both had enough, it's getting dark and we still have to clean up the mess so the door remains with one handle for now and the promise of a nice new shiny 'pair' of handles in the next few days. 

The hammer drill is here ready to finish the beading in the hall and the couple of other outstanding jobs in the house can wait now for another weekend as my dear husband has a need to retreat to his shed for now to recuperate and get on with more Important things like finishing painting the shed. 
It's a man thing and we woman are not supposed to understand. 


Friday, 24 May 2013

There's a hole in my bucket.

So here we are, we are living in our new home and have been since BH weekend, the work is 75% completed now and although financial constraints are making me be patient I can see the end in sight.
For the first time in over 20 years we have a garden of our own and as much as I am really chuffed with it I have to admit to being surprised at just how Trevor has reacted to this over grown badly ignored patch of land.
He has almost reverted to his younger days in his enthusiasm and ideas and efforts he is putting into the garden.....
Hang on I need to clarify that statement, not all of the garden is enjoying his attention, apparently the garden is to have a little pickit fence about half way up, the bottom half is to be lawned with a flower bed running up one side and a patio (that is already there)
This half of the garden is mine the grand kids and anyone else who comes to sit out and enjoy the summer days/evenings.
The top half of the garden is to be his domain, it houses his 'man shed' a 3/4 built greenhouse that has taken over his days and late Into the evenings for the past week, it will also have a vegetable patch and a cloche that currently has strawberries growing in it. 
It is this half of the garden that has had all of his attention and caused him to forget that he has a wife who can't make dinner or even a cup of tea at times, when reminded he appears quite sheepishly from the structure that is now beginning to resemble a greenhouse or the depths of his shed.
Friends have been literally dragged down the garden to view his half painted shed, his shelves he has put up in there and now of course the greenhouse, often they end up helping with the construction and I dare say their wives sit at home wondering what on earth their husbands are doing until all hours round at our house.
My girls and I had a conversation on the best way to get his attention when he is busy in his shed or his greenhouse and I need something, we went from the sensible.....a bell of some sort to the stupid....an air rifle, to the sublime......a paintball gun....different colours to be fired at the greenhouse windows suggesting different levels of need.
I tend to go between all 3 ideas at the moment depending on how frustrated with him I am. 
Why should I feel such frustration you may ask? Or maybe you don't but no matter because I am going to tell you anyway.
As I said earlier the house is about 75% finished, the kitchen is still the major job to be done but that is having to wait until we can afford decorating materials, this doesn't concern me as the room is workable with fitted cupboards ( 1 of which is waiting for its door handle) nice vinyl flooring ( waiting to be stuck down) a new ceiling ( part of which still needs doing, oh and the big pipe in the corner still needs boxing in)
Then there's the hall, decorated, flooring laid ( oh apart from the edgings)
Ah and the lovely living room, beautiful room all finished ( well it will be when 2 pieces of skirting and a door goes on)
Do you see a pattern developing here?
He has earned himself the name of half a job Bob with our family and friends which he wears with pride.
So we are back to the patient wife, smiling lovingly at her husband while he throws his soul and his energy into the precious greenhouse day after day, night after night until its too dark to see, not nagging as I suffer cold air blowing through when he leaves the back door open because there's no kitchen door to close as yet, not getting whiny as I dehydrate through lack of fluids day after day ( ok ok I'm exaggerating just a bit)
But you get the picture I'm sure. 
As good as I have been something must have alerted him to the fact my patience was wearing thin ( could it have been the overly sweet smile perhaps) as he covered his back by promising that the first rainy day would be spent doing all the little jobs in the house..... Woohoo
So today it rained, it chucked it down all day.....
Apparently every job required the cutting of wood etc, this he couldn't do in the house because of the mess it would make, it also required his power tools and any fool knows you can't use them outside today, why? Because its RAINING!!!!

Sunday, 28 April 2013

The front door is lovely....

It's hard to believe this all started for us early in March when we decided it was taking too long to wait for a suitable bungalow and maybe we should start bidding on two bedroom houses instead.

We knew the area of town this house was in, an older part of the town that was well set out, quiet and pleasing to the eye, we never dreamed we would get the chance of having the house but as it stated it was suitable for disabled (level 3) and I am a disabled (level 2) we wondered if they would be prepared to make it suitable for me.
We were astounded to find 614 people had bid on this little house and even more astounded to be given the opportunity to view it.
First holdup.....we had to wait for councils OT to be available to view with us as it would be on her say so if it would be deemed suitable for me.

At the viewing the council officer apologised for the smell as she opened the door.
The front door is lovely,its green, double glazed and very smart....
The house was unloved, dirty and badly in need of decorating, wires were hanging from the ceiling where it was in the process of being rewired?
I put a question mark here as it later became obvious it hasn't been rewired, it has been 'updated' which isn't the same thing at all!
Floorboards were up as they were in the process of fitting a new boiler and central heating.
There was a stairlift in situ and eventually we got it sorted so it stayed for my use although up to now we still haven't managed to get either Stannah or the council to come and sort it out and after it getting stuck halfway down the stairs last Tuesday evening and the alarm going off all night as Stannah claimed we had to go through council to get it sorted I can Inform you it is still stuck there now!
The OT walked around with us and observed me in each room, as long as the stairlift was going to be left she was happy to agree to us taking the house, the one thing she did want for me was for the grab rail in the toilet to be moved from the left (my completely useless hand) to the right, it's all she asked for and I can tell you now it has not been done!
We ended our viewing in the kitchen, an old, doors hanging off battered tired old room.
'This will be done for you before you move in' the nice council lady said and showed us a drawing with new fitted units along the wall, a space for fridge freezer etc.....
Now I will admit I did no more than glance at the drawing assuming it was the kind I had seen when they replaced mum and dads kitchen two years previously, new units, decorated and flooring...excellent.
And the front door is lovely, it's green, double glazed and very smart......

Of course this all meant we would have to wait but we were happy to do that, we now knew the whole place would have to be decorated before we could live in it as with my medical condition it would not be possible to have major disruption going on when I was there so we started planning.
We live on benefits due to my disability and Trevor ( my husband) is my carer so money is as you can imagine pretty scarce. We get by week by week but have no savings or anything to fall back on when unexpected costs arise so no way were we financially in a position to completely re do this house.

The council now give new tenants a 'decorating pack' if the accommodation you are moving to needs work doing to it, she said the list for ours was one of the longest she had seen showing what a poor state it was in. It comprised of filler, 20ltrs of paint, 2 paint brushes, a roller and a few odds and sods, a drop in the ocean for what was facing us.
Here's the good bit regarding the 'decorating pack' you don't get it until you have moved out of your present home and it has been inspected! Now bearing in mind my home had already been inspected a few weeks previously and the council lady was so impressed she asked us to leave our wooden flooring and blinds if at all possible we asked why this was and was told 'in case you trash your place as you leave!'
I would have laughed at this point if I weren't so shocked at the councils total disregard for its tenants.

We waited nearly four weeks for the call to go and pick up the keys, the house was ready for occupation. Unusually we had to go to the civic centre for the keys and not to the property as I had expected but off we trotted.
The first thing we did on obtaining the keys was to go and look at our new home, what had they done? How was the kitchen now? Was the rest of it as bad as we remembered?

The front door is lovely, it's green, double glazed and very smart........
Yes it was as bad as we remembered, dirty, smelly, old ceiling paper hanging off, cobwebs in every room and lots of strange holes in walls.
This is ok Trevor reassured me, it needs a good clean and decorating, it's doable. It will take us a few weeks but will be lovely and clean and bright once finished.
The kitchen door was closed and as we opened it we both stopped dead in shock, the new kitchen was one and a half base units, the cheapest white units they could have found and one wall unit, 4' of work top, 2' of which we would have to lose to put a fridge/freezer in there. Nothing else had been touched, bare walls, badly artexed ceiling, no flooring and they had even taken shelves out of the built in larder!
I telephoned the council " how? What had happened? Why?"
This was similar to the drawing she insisted and all they were going to do! That's it, there's your kitchen, in fact there's your new home!
I am not ashamed to say I cried, first tears of many over the coming weeks over this house we had been so excited about, had visualised ourselves in, had planned for and waited for.

We are now on week three of the longest hardest three weeks imaginable, it has been one catastrophe after another, they put the water on and it flooded through the ceiling knocking out the electrics where their workmen had put a nail through a pipe when putting floorboards back down, then it gushed out under the sink in the kitchen where the pipes hadn't even been hand tightened.
The removed ceiling paper revealed distempered walls and ceilings that paint wouldn't stick to, they had to be plastered before they could be painted, each and every one of them. Paper revealed paint and then more paper underneath so each room needed stripping and treating before it could be painted.
And the kitchen, an expense we hadn't planned for or expected.
We now had to find and fit a kitchen in the time we had before we moved in.
The kitchen ceiling had to come down and be re boarded, just as well as they found two more slow leaks left by the council which would have caused us problems.
The front door is lovely, it's green, double glazed and very smart.....

Family have all rallied around, my father in law loaned us some money to help get us going, brothers in law, daughters, friends have all given their time to help us and have and continue to work really hard, some of them in the evenings and weekends when they should be free to do other things. There have been eight people there yesterday and today and I am assured its getting there!
I have been banned from going over there these last few days as its a building site and I get in the way and get very frustrated at myself as I can't help due to my hands etc, this leads to such stress for me and more tears than I care to mention so I now stay at home and do all the phoning, organising and packing up here.
And the council? Did they really think it was ok to put a disabled woman in this property as it stood?
Yes they have come to see us, after some persuading by councellors they have made small concessions to help us, we have an extra week before we have to move etc.....
Sorry Harlow council but too little too late.
And so blog readers we shall be moving BH weekend ready or not!
The front door is lovely, it's green, double glazed and very smart......

Monday, 1 April 2013

Blue eyes v brown eyes

I never ever thought that one day I would have to justify my existence,
to the authorities and to the public at large but this is now happening.
For the last couple of years I have had to go into minute detail about my medical condition to enable me to receive the social security that I believed was my right when I became too disabled to continue to work.
I had to prove time and time again that I was unable to work, that I was unable to be left on my own for too long and more recently that I am not able to sleep in the same bedroom as my husband/carer.
I found that Penny the Dr of Psychology,
Penny the outgoing friendly person,
Penny the welcomed part of society was disappearing before my eyes,
I was becoming a non person, a figure in the benefits war, a scrounger, a skiver, scum and a faker.
This didn't happen over night and at first I resisted it, the labels they were trying to stick on me, the sense of worthlessness they tried to convince me I should feel, the shame I read directed at me in most newspapers and on most media channels.
But gradually you get worn down, I waited for my fellow man to come to my rescue,
I waited for the public to ask what was going,on, why were we being persecuted?
We tried to tell others what was happening but we were called scare mongers, people who wanted something for nothing.
The pointing fingers said ' we can't afford you'
You're worthless, a strain on this countries dwindling finances

I can understand why the greedy conscious less self serving government are doing this to me what I don't understand is why the public at large continue to turn their heads away.
Is it simply that they have bought the lies, the false figures, the hate levelled at us?
How do they see us?
Who do they think we are?
Can a government be that powerful they can dictate how society thinks?

The answer is yes!
And here is why.....
Whilst in training for my Doctorate I studied the classroom experiment
Blue eyes v brown eyes carried out by Jane Elliott.
For those of you not aware of this it was a primary school teacher who one day made the brown eyed children in her class wear white collars and told the blue eyed children that they were superior to the brown eyed children.
The blue eyed children got special privileges etc etc and here is the interesting part, initially the brown eyed children questioned this treatment but after not too long a time they accepted that what their teacher was telling them was true and they acted accordingly.
The teacher proved very successfully that it is possible to brainwash these children, one half to believing they were superior and the other half into believing they deserved the treatment they were getting because of the colour of their eyes.

Is this not happening now on a grand scale?
If you are dependant on the state, if you are on benefits, if you are disabled you have brown eyes whilst the government through their lies have convinced the rest of the public they are superior and have blue eyes.

I have one last word to say on this...
The following day the class structure was reversed and the brown eyed children became the superior race......

Saturday, 23 March 2013

Continuation of my journey through life

I am out the other side and it doesn't look as if too much permanent damage has been caused by my latest flare up....
What a real corker that was, both hands in such a mess that they were actually bleeding at times, joints swollen and painful and umpteen sleepless nights, if pain was measured on a scale of 1-10 I was off the scale somewhere around infinity!
An infection was coursing around my body having the time of it's life and pushing its way out as an abscess in the most inconvenient of places!
Eventually I gave in and visited my GP who although sympathetic can do little other than try to treat the symptoms, so antibiotics for abscess/infection and oramorph to back up my usual Tramadol, lots of sympathy etc and a lets wait and pray it doesn't last too long.

So you can imagine how stressful it was when we saw on our councils list a two bedroom house that had been adapted to a disability level 3 in an area we know is lovely and decided to bid on it can't you?
I am registered with the council as a level 2 need for a property but after waiting for well over a year for a suitable place to come available and learning there were only 45 two bedroom bungalows in the whole town we had decided we would start bidding on 2 bedroom houses and see if they could be adapted for me.
So the thinking was if it was already a level 3 adaptation hopefully it wouldn't take much more to turn it into a level 2 and therefore we may be considered for it so we bid on it and then the waiting game began.

I will briefly explain the bidding system for you,
When you apply to the council for housing, either first time or transfer, you are put in a priority band according to your need and other factors I.e health, downsizing etc
Then you get a place in that band according to length of time you have been waiting.
We knew we were priority because I had been assessed and it was agreed my need was high as I could no longer get out of my flat due to the concrete steps outside, I couldn't access the communal garden and we had 1 bedroom we were happy to give up as we no longer required it.
The bidding cycle runs from Thursday morning until early hours of the following Tuesday morning.

We put in our bid and we waited, on the Wednesday of the following week the council phoned to ask if they could come and inspect this property, I agreed and it passed with flying colours, did this mean we were being considered? The lovely lady from the council couldn't tell me anything, not even a hint although she did know the house we had bid on and told us it had a wet room already and there was a stairlift in there although it was being taken out as it wasn't one of theirs. But if it had already had one there was no reason why another couldn't be put in to make it suitable for me.
That Thursday the list came on line again and the house we had bid on showed as 'short listing'
It also showed that 164 people had bid on it.
I had convinced myself then that we had no chance, even hubby who is ever the optimist thought we would possibly have made the top ten in the short listing but didn't think we would have got it.
I pretended I really didn't care, we would carry on looking each week and it must be our turn soon and anyway the perfect bungalow may come up in the next few weeks.
I won't pretend my heart didn't leap a little every time the phone rang for the rest of that week or that I didn't rush to scan the post but in my heart I accepted we had not got this one.
Saturday mornings post brought with it an envelope from the council, I looked at it without enthusiasm, the lady who had Inspected us said she would put her findings in writing and send them to me........
I didn't even open It straight away, another letter had caught my attention first so it lay on the bed next to me for a few minutes and then I reached for it, opened it and read......
OMG OMG they had offered it to us, 163 people were going to be disappointed but not us because they had offered us the chance to view the house.
Can you believe it? Well I couldn't and Trevor was out walking Molly and took absolutely ages to get back.
We had to ring council Monday morning and arrange a viewing and then say if we were going to accept it or not.
Monday came and with it more waiting as the council rightly wanted their OT to be at the viewing as she would say if it was suitable for my needs or suggest anything that needed doing to make it suitable for my needs, they had to contact her and see when she was free.
Why oh why do these things take so long?
We had a week and a bit to wait before she could attend for the viewing and I went between being convinced it was fine and being sure it would be taken from us before we even got it.

I also had the worst week health wise ever! A suspected tummy bug on top of the flare saw me bed ridden for two days and weak for the remainder of the week.

Now we knew the number of the house hubby took me around one afternoon to see where it was, it is a lovely area, it already had a ramp to the front door. He got out of the car to see if he could see anything more and the man next door came out. They got chatting and they both disappeared into this fellas house, he took Trevor through to look over his fence and see what 'could' be our garden. Trevor was full of it, the man was called Steve, he and Trevor had practically exchanged life stories in that short space of time, the garden was huge but in a right mess.
Me) you walked through his house to get to the garden?
Trevor) yes
Me) what's it like?
Trevor) erm I don't know, I didn't look.
Me) ok, you went through his hallway? Where are the stairs?
Trevor) they must have been there somewhere but I didn't notice
Me) his kitchen? What are his unit's like? Colour
Trevor) I have no idea, sorry love I just didn't notice any of those things
Me) so you walked right through his house but can tell me nothing?
Trevor) he's got wooden flooring

The viewing.
We all do it don't we? You get images in your head of what a place might look like, how it may be. Remember they had inspected ours as they insist you leave your property in top condition before you move.
Well......
Unloved, un cared for and a tip would be describing this house politely.
Disappointed is an understatement for how I felt as I walked through the door.
The stairlift was still there but not working as the electrics were in the process of being replaced so floorboards were removed, holes in ceilings etc.
gas central hearing and a new combi boiler was also being installed and the kitchen was waiting to be replaced.
We had to look beyond these things and also realise how lucky we were they were doing them now before we moved in but the decor was dated and dirty, in fact every bit of the house was dated and dirty and quite a shock when without blowing my own trumpet I can say my home now is beautiful.
I think we were both a bit shell shocked to be honest, the garden was Indeed huge and overgrown with rubbish lying all over the place. Some parts were so overgrown you couldn't actually see where next doors fence was!
Half way down was a pond, filthy dirty and neglected, the neighbour had told Trevor he had removed the fish the previous week as the water level had dropped alarmingly.
We stood on the bit of path we could find and peered over into the dirty water to see dozens of eyes peering back, the pond was teeming with frogs and I mean teeming, I have never seen so many frogs all together before and they were definitely watching us watching them!
The council lady said they would be removed and the ponds ( yes there were two) would be filled in before we moved in.

The OT walked round the house with us making notes of where grab rails needed to be put for me and watching how I coped with the layout of the house.
' I can see you are shocked at the state of it' she said 'but I also sense you really want this place' and she was right, we did, both of us had fallen for its dirty unkempt charm and could see beyond the grime and we desperately wanted the chance to make it our home.
But for us to have it there would have to be a stair lift, the one that was there was being taken out in two days and OT explained we would have to go through the process of contacting social services, being assessed, waiting for funding etc etc and this could all take months if not years and she would not sign for us to have this house without one as I clearly could not cope with the stairs. I was close to tears, we had seen the house, it was within our grasp and it could still be taken away even now.
It was the council woman that gave us back hope, the stair lift that was here belonged to Stannah, she had details of it, It had only been in for 16 months, we could ask Stannah if we could take over the contract and then they could leave it there and council would be happy to agree to that and so would OT.
So as soon as we returned home I got on the phone to Stannah,
Yes it was their stairlift but the contract for it was with the council until 2021, all they would need was an e mail asking them to leave it there and changing the details from the previous tenant to ours.
And that was it done, council lady very happy to send required e mail, OT very happy to send report agreeing to us having the house and hey presto it's ours.
About 4 weeks to finish the kitchen, the re wiring and the gas installation and we get the keys and then the rest of our lives to show the house some TLC and ease it back to full health.

All this time I haven't been sleeping well due to pain, stress, waiting, hoping etc etc
Now I can't sleep due to excitement and planning it all in my head.

What a month this has been eh?



Saturday, 2 March 2013

When Penny met Ed

Trevor ...........Trevor is the long-suffering husband Who has stood by me over the years as I have rushed headlong into one crazy scheme after another!
He has allowed me to bring homeless people into our own home, been talked into giving them a job on the building when he had his own gang of workers, Spent his own time and money building offices for me and co-workers in the homeless project that I worked for,And all this with an occasional shrug of his shoulders and a raising of the eyebrows.
So it would have come as no surprise to him when I agreed to have a meeting with Ed Balls (shadow chancellor) on Thursday.

This came about thanks to my twitter friendship with two Labour councillors, Ian who was plucky enough to have his head shaved for SAMs mission raising funds for the neo natal unit at our local hospital.
I have to tell you here that people say beware of twitter friendships as people are not always as they seem but Ian is as warm, friendly and 'real' in person as he is on twitter.
And Jon who I have met before and I respect as a genuine caring person.
Still No reaction from Trevor when it turned out that meeting was to be in our house, and just a slight flickering of the eyebrows when it became apparent the meeting was to be filmed for the television and reported on the radio and in the local paper.

Over the years Trevor has got used to the idea that he's quiet shy Unassuming wife turns into a kind of righteous Warrior when fighting injustice particularly Injustice against vulnerable groups And apart from The odd glare that I get from him occasionally if he believes I am perhaps going too far He remains in the background and he's quiet support allows me to get on with the battle in hand.

This is the way it has been for the last couple of years whilst I have been affected by and fought against the changes in a welfare system that is causing fear and despair among sick– disabled and Vulnerable people.
It is whilst trying to raise the plight of sick/disabled people and slowly sinking Into despair I became aware of and started supporting wowpetition, this is a well thought out, well advertised and well supported petition thought of and run by a group of determined supportive caring people and I was and am proud to be involved in it in my own little way.

Thursday morning with the afternoon's meeting imminent I had a slight panic as I turned to Trevor and asked 'how do I get myself into these things?'
He shook his head and shrugged he's shoulders (blimey must be bad both reactions at the same time) and replied 'I don't know, you just do'
I had been getting myself slowly wound up since Wednesday morning......
let me explain
I live on the ground floor of a three storey block of flats and half way through Wednesday morning hammering started coming from above, it turned out it was from the top flat and I watched in horror as this foamy stuff fell from above and secured its sticky self to my kitchen window! Then the drilling started and I was starting to dread the scene the following day if this continued.
Can you imagine sitting having a serious conversation with Ed with the cameras rolling and then the noise starting from above?
Whilst I got myself more and more fretful Trevor spoke to the workmen and they told him they were finishing that evening and would be back Thursday morning purely to clean up the mess on and outside our windows etc. Huge sigh of relief.

Thursday.....Lyndsay my youngest daughter came around to clean the place for me, it is always reasonably clean anyway but I was treating the afternoons visit like having royalty visiting and I am a bit obsessive with having a clean tidy home so Thursday that was bordering on manic!
Trevor was dispatched to the supermarket to buy biscuits
'Get a selection' he was told
'Maybe one of those packs that has a good selection in it'
Simple enough?
Phone call from Tesco
Trevor ' there's a family circle box of biscuits here they are £7.50 , or Tesco value at £1.75'
Me ' don't even think about it, do you seriously think I am going to be offering them Tesco value biscuits?'
As it happened the family circle were on sale at half price so not so bad after all but really, did he have to ask?
And as a by word I will tell you he also bought 2 packs of Tesco value tea cakes and what do you think Ed went for?

So things were moved, cleaned, polished, Lyndsay had been talked into staying by me and raided my wardrobe for a 'suitable' top, for once it was lucky that I can't dress/undress myself as I certainly would have changed a dozen times by now but knew from the look on Trevor's face not to even go down that route.

4.15 Suzie ( parliamentary candidate for Harlow) Carl (labour regional office) he had come Wednesday to fill us in on what what happen, lovely calming friendly man and Phil (labour man and for today official photographer) walked in and out and back in and out again, apart from Phil who accepted Trevor's offer of a cuppa and decided to have it in peace before everyone else descended on us.
It seems the media were all waiting outside the flats for Ed Balls to turn up, wonder what my neighbours thought was going on and how many curtains where twitching.

It was at this point that if I could walk I would probably have done a runner and glancing at Lyndsay I think she may well have come with me.
And then all hell broke loose.......Ed Balls and entourage of ladies and men and press and more press and .......Trevor reckons several people just off the street all walked into my living room.

Lots of people said hello, I had no hope of remembering their names or who they were but they were all polite and kind so it was fine.
Ed and I sat next to each other, he smiled and we just chatted naturally.
I did notice the camera being set up opposite us but strange as it may sound when we were talking I mostly was able to forget it was there.
Ed listened carefully and asked if he wanted points clarified, he made it very easy for me to talk about the bedroom tax and it's affect on me and also my feelings regarding the whole welfare fiasco. He genuinely seemed to care and be as outraged as us at what is going on.
I have to state here that I definitely categorically deny that the meer cat that was sitting on the back of the sofa just behind Eds right shoulder throughout the interview was not placed there to add humour to the proceedings, he always sits there and was genuinely over looked by us all :-)

Ed then did a quick Interview with BBC about the bedroom tax and what we had talked about, everyone else left the room but they agreed I could stay, it was apparently whilst they were in the kitchen with a Trevor who up to now had avoided them all that he entertained them with stories of his childhood.

I then did the radio interview while Ed did a piece outside for another matter, people were coming in and going out and I just smiled a lot at them as I had no chance of remembering who was who.
Ed came back and we chatted without cameras etc for a while, he is a nice genuine man and although I do realise this was political for him he certainly made me feel like he was interested in what I had to say and happy to be there talking to us.
Ed was off then to another meeting in Watford and then to yet another, it was doubtful he would be home much before midnight but he seemed almost reluctant to have to rush off and had to be prompted several times, I don't kid myself it was my company that held him back more the pull of the tea cakes.
And so as swiftly as they had all swept in they all swept back out leaving us feeling a bit as if we had been run over by a truck.
The afternoon was manic, fun, exciting, a little stressful and well worth the effort to get our message heard, go wowpetition.com
We had several photos taken, a couple on my own camera so I have a picture to accompany my memories of the afternoon that Penny met Eddie.





Monday, 18 February 2013

From me to you

I am in a flare up, I have had many flare ups in the past it is part and parcel of my medical condition but this one is probably the worst I have ever had.
Every thing hurts from the top of my head to the soles of my feet, every bit of skin is sore, some areas causing real concern. Every joint is painful, stiff, swollen and agony.
What causes these flare ups? Partly natural progression of the disease and most definitely encouraged on by stress.
And the outcome?

When it settles it will have caused more permanent damage to several joints and the psoriasis will be permanent in areas it hasn't stayed in before. It's part and parcel of the never ending game that is my life now.

Right, stop there.....I don't want pity, I don't need anyone's pity, I fight I adapt, I accept and I move on, that's me, it's who I am and this condition is just a part of who I am.
So why am I writing this miserable blog?
To enlighten, I am not ashamed of having this condition, I have no problem talking about it to you or anyone who asks and all I ask from you is understanding and that you treat me fairly.

The trials and tribulations in life seem to come in phases don't they?
I have been through many such phases in my life where one problem/change has piled on top of another until a spade hasn't been sufficient to dig my way out, I have needed a bull dozer!
This should tell you that I am not a quitter, I fight for my family, for my friends and for those in need where I can. Often I have started the fight alone only to find others have joined me along the way until we have become strong enough to be heard and even at times to change things.

And this brings me back to the here and now....
What is so different this time?
People are not listening, not understanding, not believing or just plain not caring.
Yes I apologies I am going on about social security again, or the lack of it as that particular safety net is deliberately and dangerously eroded before your eyes.

I see many of you shaking your heads "we are not talking about you or ignoring your plight, you are a genuine case, you won't be penalised/affected by our action or lack of action"
Ah but you see I have been and continue to be penalised and affected as do the many many genuine people caught up in this cruel system.

Let me tell you how I personally am affected
I live in fear of my benefits being stopped when/if ATOS /DWP find me fit for work at my next assessment or the one after that or the one after that.....
I am only getting a 1% rise on my benefits even though everything else has and is increasing in cost at a worrying rate.
From April I am going to have to pay 25% of my housing benefit as I am deemed to have two spare rooms even though we have been waiting for over a year to downsize Into a suitable place. You see I can no longer get into or out of this place due to steps outside and I haven't been able to access the communal garden for years.
But there are very few smaller places available especially the sort I need so we pay whilst we wait.
Even after moving I will still be charged for one extra room as we need a two bedroomed home as stated by councils OT due to my disabilities.
Doesn't matter says government, you are a married couple you only are entitled to one bedroom regardless of what your circumstances may be.

Now I could go on here and tell you what this 'bedroom tax' will mean to grandparents who won't be able to have their grandchildren to stay, or parents whose sons/daughters are serving in the forces who will still be expected to pay to keep their rooms for them. Or all the other disabled people who will be affected by this callous tax but you may not believe me or be interested in those faceless people you don't know so I am instead telling you of my personal situation.

I have told you before, I have written several blogs detailing these changes, have you not heard me? Did you think I would not suffer? Or do you look the other way and just pray you don't get picked on or noticed?
Are you not sick? Disabled? Unemployed? Low earner? Do you not have to rely on any benefits?
Well that's great and I hope you continue in good health and well paid employment and never have reason to need assistance because if you do it is likely it will no longer be there.

I will continue to write, talk, shout about all of this and point out as I have above the impact it is having on my health until not one person can turn around in the future and say they didnt know.

So read about me, think about me but please do not ever pity me.......help me, help me to get the message out there, help me to get things changed and allow me to handle my condition without having to handle all this added stress as well.

Please if you haven't already done so sign wowpetition.com