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!!!!

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......

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......

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?

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.

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

Me me me

Who am I? Why do I fight?
This blog is probably long over due so bear with me as it's all about me,me,me
I have a presence on twitter, only a small one admittedly but big enough for me to handle. If you were to look at my followers and those I follow you will see people similar to myself, similar interests, similar beliefs etc etc. this is deliberate, I often see people who have been upset, annoyed etc by others on twitter and have to ask myself why would you follow people who were going to make you feel bad about yourself?
At the same time I don't necessarily follow only those who agree with me, I am not afraid of a bit of debate and I am always willing to listen and learn and hope people find me fair.

It was almost four years ago I joined social networking sites and it is no accident that it was around this time that my medical condition started to gallop along at a rate I had previously been lucky enough not to see.

Before this time I was working, I had worked with homeless people, victims of domestic abuse, drug and alcohol problems and then finally from my own practice at home, the years of studying and acquiring my qualifications that culminated in a doctorate of Psychology were being put to good use.
I have always loved working with people which may make my next statement a bit hard to understand....
I am an introvert, I am not comfortable in crowds, hate being centre of attention and get very tongue tied if the spotlight is put on me.
Maybe it is it's own explanation of why I chose the kind of profession I did, I knew I had a 'feeling' for others, an empathy that meant I could understand and work well with people who had problems. In the counselling room the focus is very much on the client as it was with all of my clients in each of my jobs.

Why do I feel the need to explain this now? Why today?
Well you see today I put a picture of my hand on twitter to make a point and this got me quite a bit of attention that I just didn't know what to do with......
Sigh......let me explain
I have Psoriasis and Psoriatic arthritis, I have had both for quite some time but as I explained earlier four years ago they both went mad, no one knows why or how to slow it back down.
For the first few years on twitter very few people even knew I was sick/disabled and as you can be who you wish on there why should they?
I certainly never lied or deliberately hid the fact but it had no reason to come up so why would I volunteer the information?
So why now? Why am I so vocal now? Why am I attracting the very attention I shun normally now?

Just under a year ago I was moved from the WRAG of ESA to the support group.....excellent you may say, so what's the problem?
Can you imagine waking up every morning and sweating in fear until the postman has been and you don't get a brown envelope from DWP?
Am I being over dramatic?
No, you see it took me months of fighting, medical evidence from consultants, GPs and photographs as well as the lengthy detailed form and my own statements to get into the support group.
Ok you may say but you're there now.....
Ah yes but I could be called to do it all again in 3 months, 6 months, 9 months, a year or 2 years, I have no idea how long they are going to leave me alone for, it is coming up to a year now and my stress levels are rising daily.
' ring and ask' you may say but I am too frightened to draw attention to myself to do that......ridiculous? Yes it is but it is also very real.

I also get DLA as my whole body is now wracked with Psoriatic arthritis, my husband is my full time carer, I can no longer walk far, wash myself, cook, shop.....shall I go on?
That's ok isn't it? I am a genuine claimant aren't I? They are not after me are they?
Wrong again.....
They are changing DLA to PIP, a shiny new benefit that many many genuine claimants are going to lose costing them their carers, their mobility car if they have one and a fair chunk of their monthly budget.
This won't affect me until 2015 now as it has been put back for those of us on indefinite awards, so I am ok yes?
Well no actually I am not, I have from now until 2015 to stress about this, this government changes the rules/laws as they please, if ESA changes my award my DLA is affected straight away too even if I appeal. I do not feel safe.

Last January we were put on the councils transfer list as I can no longer get in or out of our three bedroom council flat due to steps outside our front door, I can no longer access the communal garden as you have to leave the block of flats and walk round them to get to it so I haven't had use of the garden for a couple of years.
The council sent round an OT to assess our needs for housing and we were put down for a two bedroom accessible place as hubby can't sleep with me when I am having a bad flare up or I am having a bad night. So we are waiting for a suitable place to come up, fair enough you might say, there can't be a problem there can there?
Well yes there is, you see now there is 'bedroom tax' due to come in April, we are deemed as having two spare bedrooms now and even after we have moved they still Insist we will have one spare bedroom!
There are no appeals, there is no way round this that I can see......I do not feel safe.

My benefits are all I have coming in to live on, I can't make more money, my husband can't work as it would cost far more to have a carer come in each day.
My benefits are not even going to rise in line with inflation this year but I am expected to miraculously find this extra money!
I still talk to/hear people who just don't get it, it's not people like you they are after I'm told. Well the fraud has to be stopped I hear. We all know someone who could work but has been claiming for years and years.....don't we?

So today when I picked up a glass and dropped it my brain wasn't quick enough to remind my left hand it doesn't work and I made a grab for it splitting my already very sore skin and causing it to bleed, in my anger of the moment I cursed the government for making me feel so vulnerable and posted the picture on twitter.......
I am often found ranting on twitter these days as more and more outrageous and cruel things are suggested or carried out by this government, I try to support friends followers etc who have been or are going through any of this.....
The introvert who would rather not be noticed is often found these days taking centre stage!

No place for sick/disabled in this country

I started this governments term with denial ' no human beings can be that cruel' and I waited to see if the scaremongering I was reading almost daily on the social sites turned out to be just that, exaggeration, over reaction etc......
Then my emotions turned to disbelief as the things I had read/ heard came Into being, I watched the government bully and lie their way to meet their aim to deny the majority of sick/disabled help.
I fought my own battle for recognition and the pittance they call 'life of luxury' and what a battle it was just to be recognised as having a medical condition that meant I was no longer able to work and be placed in the 'scroungers' group.
My emotions boomeranged in this period from fear to fury that I was being made to lay out in minute detail my life as it is now.
Anger boiled over many times when friends were put through the same wringer, some who won their case and others who should have but didn't.
I watched in cold rage as the lies and deceit rolled from the mouths of the politicians who were supposed to be serving our best interest and were repeated time and again by the puppy dog press and media.
I shouted at the social sites, the television and anyone that would listen to me.....'open your eyes' for gods sake someone step in to protect us, someone rise up and stop this evil government from continuing the destruction of the vulnerable.......but no one listened, apparently we were an unaffordable drain on resources.
My own MP had assured me the change over from DLA to PIP would not be conducted in the same way as ESA, he sat in my living room and told me I had nothing to fear.
I held my hands out to him, the psoriasis and the swelling from the arthritis obvious and pleaded with him to tell me if he believed I was 'fit for work' or skiving or a scrounger. Again he reassured me all would be different with PIP, I had nothing to fear from the changes.......
He lied, yes he lied to me, face to face in my own home he lied to me.
ATOS got the contract to carry out the assessments for PIP and the ESA debacle was about to be repeated.
We were to be targeted again and again, just incase the incurable were magically cured, just incase missing limbs regrew or we woke up one morning and found ourselves fit for work!
All of 2012 my anger knew no bounds, I fought on, fought hard for justice, stood with others fighting for the same thing and advertised every little unjust move this shower of a government made. I am sure this near obsession lost me followers on twitter etc as people wondered at my 'dog with a bone' attitude day after day as I tried, mostly in vain to open the eyes of those that refused to see and the ears of those who heard only the bile against us.
Carrying this amount of anger with you daily has a negative effect on your health and emotional well being and that was certainly true for me as there were more and more days where despair took over when I felt unheard, when nothing was changing for us, when the evil government pushed on with their lies and rhetoric and still the majority of the public seemed to believe every lie that dripped from their lips.
Several times I needed and took a step back, a break for the sake of my sanity, I refused to read the articles, blogs, reports, I could take no more at that time.
But I always returned to the fray......
Last night I became aware of the latest nasty trick about to be used against us, thanks to the work of a very brave lady Sue Marsh who posted this http://diaryofabenefitscrounger.blogspot.co.uk/2013/01/esasos.html
Have a read, do you believe what is being done?
Words fail me at this point........

Wowpetition.com

Hello New Year

And so As I edge my way into 2013 I ask myself what has this new year got in store for me?

Let us have a quick look at 2012 before we look to the future.
A year ago tomorrow we were accepted onto the councils transfer list, I had to accept that it was time to look for a more suitable home for me to live in. Not only for the immediate future but also looking at long term.
As my medical condition has progressed more it has become obvious that this house is no longer appropriate for me, The steps outside of my front door stop me from going in and out freely, and the narrow hallways and doorways are never going to be adequate for a wheelchair and as much as I have pushed against it that is what is in my future.
The communal garden has not been accessible to me for years now and that probably is What I miss the most the ability to be able to go outside whenever I choose.
Nothing suitable came up during last year and so I take my hopes and my dreams for a new home forward with me into this year.

My medical condition – disability has progressed during the year unfortunately And this has brought new challenges, Some losses And many adjustments to not just my lifestyle but the lifestyle of those around me including my husband who has had to learn what being a carer means.
I have both started and stopped many new medications during the year and I'm currently half way through the latest that my consultant wished me to try, PUVA Treatment.
Although as stated there have been losses in the past year one thing that I'm pleased to say I have never lost and has got me through many a dark time is my sense of humour, hopefully that will be something that I will always be able to hold on to.

Of course our family has grown over the year, the two youngest grandsons who this time last year weren't able to get around are now mini tornadoes who both delight and exhaust when they visit.
Our third grandson turned five during the year and started school where he has settled in beautifully and proved himself to be a pleasant polite and very clever young man.
Our very pretty granddaughter started senior school (I know I really don't look old enough to have a granddaughter at senior school) and seems to be settling well into the more structured routine of a grown up school.
So as you can see it appears all of my grandchildren take after me, lucky kids!

Molly our delightful addition to our family as a tiny puppy at the beginning of last year has now reached her full size And has fitted so beautifully into our lifestyle that I can't imagine our family without her now. Trevor who took all the convincing to allow me to have the puppy in the first place spoils her something terrible, she follows him everywhere and absolutely adores him And he her although if ever pointed out to him it is denied vehemently!
Bobcat makes up our family, as a 10 year old ginger ninja we feared that he may not allow Molly access to our home as for all that time he has been kingpin.
But we needn't have worried, not only did he accept her, after teaching her who was boss he now chases her around and teases her mercilessly.

I can't end this review of last year without mentioning this cruel government and the benefits – welfare fiasco.
Those of you that follow me on twitter or Facebook or indeed know me in person will know that I had my own fight to keep my disability benefits last year, thankfully after much tooing and froing and evidence from doctors consultants et cetera the DWP finally saw sense.
I can only describe the feeling caused by the changes to welfare and the cruelty of what is being said and done to sick and disabled people as anxiety and fear that has stayed with me for the whole year.
I won't go into much detail in this blog as throughout the year I have written many blogs on this subject that you are welcome to look back on, I do however want to say that to have to live your life in fear of your government taking away from you the meagre amount that they pay you to survive on is a horrific way to have to spend your life and I am very aware that that feeling will remain with me in the coming year as there are certainly more battles ahead.

One more thing that I really must cover in this blog that is so positive and has done me so much good this year and that is to thank the friends that I have found through Twitter and Facebook that have become very firm friends Through the year, People to laugh with, commiserate with, cry with at times, fight with, support and get support from has undoubtedly kept me going.

and so to all my family and friends I hope that your look back at your last year with all its ups and downs has still been okay and that you can look forward with me to this year and know that whatever it brings good, bad or indifferent we face it together........

The trials and tribulations of PUVA

Well here I am again, as some of you will know I have been having PUVA treatment on my psoriasis recently, so far I have had 10 sessions and thought I would write my 100th blog......yes I know, amazing isn't it? For someone who doubted she had anything to say I have rambled, moaned, teased and informed my way to 100 blogs!
Anyway I digress, I was talking about PUVA treatment wasn't I?
PUVA stands for......oh I can't be bothered to look it up, yes ok naughty I know but I am feeling that way today, it's light therapy.
My dermatologist was close to confirming me as a lost cause when he offered this as a 'last resort'
it is performed in a private hospital that is 40 minutes drive away from us and at my first visit I was warned I was possibly looking at 20+ sessions at two a week.
So, first visit was also an assessment of my suitability to have this treatment. The nurse looked at my hands and my feet, I did offer to show her the Psoriasis under my boobs and the patches on my legs and in my ears as well but she declined my kind offer and the reason became clear when she wheeled in the machine they use to deliver the light rays......it's like a box on a crane type thing that can be lifted up and down, no way would my boobs go in there!
There is apparently a cabinet that you strip off and stand in if the skin condition they are treating is on your body but apparently they wouldn't even consider such a thing for a person whose skin only has to see the sun peeping through the clouds to turn a fetching shade of red.
This was why I was warned my treatment would take so long, she studied me for a minute and then declared me paler than a skin type 1, apparently there is no number on the scale less than a 1 so I suppose I must be a -1 by their definition.
The week before this first appointment we had dutifully gone to our local hospital to pick up the cream/gunk that was a necessary part of this ritual.
The nurse had me sit on the bed/couch in a cubicle and hubby took off my boots and socks ( as you will see later we got around this problem)
The nurse frowned when she saw the jar of gunk ' oh typical' she said ' they never gave you the lotion, this takes so much longer to do'
This stuff had to be painted onto the areas that were to go under the light so the nurse placed my hands on a pillow and my feet on a towel and then produced the smallest paint brush imaginable, you know those you get in kids sets of paints? Well that was the size of it, she painted the area that had psoriasis on it which is practically all of the soles of both feet and palms of both hands.
I sat there watching the paintbrush on my feet thanking god I wasn't ticklish, when she got to my left hand we had another problem as that one is bent up with arthritis and won't open or lay flat and trying to get the brush between fingers that won't move was fun. The patient nurse chatted to me between sighs as she lamented the fact I hadn't been given the much more practical lotion and suggested she e mail the consultant to ask for such a prescription for me, I was happy to go along with whatever she thought was best.
Once painted we had to wait for half an hour for the gunk to be absorbed, I had noticed another woman in the waiting room drinking coffee that I now understood was having the same treatment and the nurse said that normally they would send us back outside to wait and have a cuppa etc but as my feet were obviously out of action for the next half hour I would have to stay there so I amused myself by giving Trevor the wrong answers to the crossword he was attempting to do and watching the clock on the wall opposite the cubicle.
After half an hour the nurse returned and set up the machine, apparently it's run on joules! As I understand it electricity is amps etc this machine is joules, well anyway these joules need to be worked out very carefully along with the time you are exposed to it or nasty things can happen.
So it came about my hands were stuck into the box and the tops and bottoms were cooked for 12 seconds.....WHAT? all this for 12 seconds I hear you ask, yes that's starting off slowly and cautiously apparently.
Cue same for feet but just soles of feet, tops not blasted as they could burn. Should mention here that is exactly what did happen to tops of hands after 6 sessions so only palms of hands being cooked now too.
Oh yes and just to mention here that you are provided with a rather snazzy pair of goggles to wear whilst under the machine as your eyes have to be protected from the radiation.

Fast forward the next few sessions as they followed the same pattern although the time was extended a few seconds each time, oh and also we had decided to save the palaver with boots and socks I would wear slip on sandals that I had stopped wearing when I became so unsteady on my feet and fell over a couple of times wearing them so now I clung to Trevor on each visit.

A week or so later they had been successful in getting me a prescription for the lotion (much easier apparently) however when we picked it up from our hospital they gave us a leaflet with it that explained the procedure for using it and it was completely different to what the nurses had told us and had been doing so cue more delays and problems that I might add had them threatening to write TROUBLE at the top of my notes while they checked it out.

Sorted and now we could do a 15 minute soak of hands and feet at home and use the 40 minute travel time to the hospital as the absorption time and then just needed to be in the hospital for the actual light bit. Great eh?
We bought two bowls and then promptly discarded one as it meant having my elbows up round my ears to have my hands soaking in it, we replaced it with a baking tray, inventive aren't we?
The other bowl sat on the floor for my feet and the baking tray on a little table for my hands....Sussed it.
Trevor carefully measured the hot water and the lotion to go in it and there I was, stuck with hands and feet in water for 15 mins.
Enter a very curious cat and dog......
Molly (puppy) sniffed at the water and ignored my plea for her to leave it alone as she stuck her nose over the edge of the bowl, I splashed my feet hoping to scare her away but no, a new game eh?
Meanwhile I caught sight of Bobcat preparing to jump from the coffee table onto the table where the baking tray took up all the room, I flicked water at him and he retreated only to try creeping up from the other side.......
Trevor had gone outside to clear the car as it had been snowing the previous day and although that had cleared enough for us to be ok getting to hospital it had frozen on it overnight.
The animals had me captive for that moment, unable to actually move and shut them out of the room and determined to investigate what this new game was.

Now when you take hands and feet out of the water you must not rub them dry, you can pat off the worst of the water which I did before slipping my still damp feet into my highly unsuitable sandals.
As we got to the door I realised just how much fun this was going to be today as the ground was icy and here was I in sandals.
Trevor hung on to me, half helping half carried me to the car and at the other end he had to do the same to get me into the hospital, people must have wondered at this daft woman in sandals coming in from the snow/ice but hey, I was born to be different.

I have now had 10 sessions and should be half way through but was told at the last session it was more likely to be closer to 30 sessions needed for me, we have reached 3 minutes under the light at this stage so we are progressing slowly but surely. Have I noticed a difference? Not yet but I live in hope as ever.

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From anger to despair

I did not watch the Autumn budget speech today, I knew it would make me mad, upset me and infuriate me. I did however keep up with it via twitter and the tweets were fast and furious and as expected it wasn't good.
It especially wasn't good for unemployed/sick/disabled people as once again they were vilified by this Government and made to pay again for the economic crisis that was in no way caused by them.
I am a firm supporter of the sick/disabled and am quick to voice my concerns and horror at what has happened and continues to happen to us.
I am followed by a variety of people on twitter, some to do with the disability, some to do with my profession as a psychologist and then more to do with just who I am, after all my disability isn't me, it's only a part of who I am and I have many other aspects to me, well I certainly hope I do!
So I don't only have supporters following me, I have people who don't agree with my stance on benefits or the government and that has never been a problem as we may well have other things in common.
That is.....until today.
Today my views cost me a follower, not a problem, I am not one of those that highlights how many followers I have gained/lost as it really does not matter to me too much as long as I don't lose those I consider to be friends, they are the reason I come on twitter most days, however I don't appreciate abuse and the way in which this follower left was abusive so yes I was initially angry.

That anger was short lived as I trotted off to chat to friends and do other things.
A couple of hours later I checked out another social site I follow and read something that make me stop and think, it brought me to tears.....
Here there is a young family with young children that I talk to, the husband/father is disabled and in chronic pain every second of every day. He has continued to work as long as he possibly can, a week ago he was told for the sake of his physical and emotional health he could no longer work in the way he had been.
ESA/benefits should be there to help this family shouldn't it?
Would you all agree they are deserving of help?
Those of you that believe there are deserving and undeserving benefit recipients wouldn't begrudge this family help would you?
After today's budget the father/husband was in despair, he told his wife they couldn't continue with the lack of support (financial)
I understand his concerns but what really struck my heart like a hammer was his wife's reply, she said
'I am looking for a weekend job (she already works, this would be a second job)
I have already taken back the Christmas presents we now can't afford, I only eat one meal a day to save food and money'
This is a young mother with two young children......
I will say no more about this as I respect their privacy, I do have their kind permission to tell you about this and for that I thank them for their bravery.

This blog really wrote itself today because I needed to get these feelings out there!
Are you proud to be British?



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Compromise

What a week that was!
Trips to hospital for light therapy x2
Father in law heart attack x1
Good friend operation for breast cancer x 1
Puppy spayed at vets x 1
Daughters/grandchildren visit x 3 no 4 hang on make that 5
Day at daughters x 1
Taking mum to town x 1

Days in the week? Not nearly enough!

You know how you get 'those' kind of weeks? Well I have just had one of 'those' months where there just are not enough days in the week to do all that needs doing, or enough hours in the day to be everywhere you are needed with everyone who needs you.
Even harder when you are me and unable to just 'up and go'
I have to rely on my long suffering husband to go to places, help family/friends and do the running around either with me or for me and believe me he is not always so easy to convince that he really should 'pick up that bed daughter wants'
Or 'go and jump start other daughters car'
Or go get the 'special offer' stamps from the post office for my mum

He never says an outright no, he just ignores me and hopes that by the hundredth time of me asking I might have got the message and give up, or he says yes and then does nothing so I sound like a fishwife with my continual nagging.
Marital bliss eh?
Bless him, he is so laid back life just seems to pass him by, I have always been the doer, the thinker and the reactor......
One thing I have learned recently is if the girls want something done that he needs to do such as a lift somewhere etc I now pass the phone to him and they ask him directly instead of going through me as he is very unlikely to say no to them and then I don't get wound up trying to get them an answer from him.

It got me thinking about how much we have both had to adapt to this new lifestyle with me being disabled and him being my carer, how much it has affected us both.
I still want the house to look the same as when I was caring for it but of course it doesn't.
I still expect to be able to help our daughters/grandkids/friends when they need it but its no longer my place to say ' yes of course I will do that' as it needs both myself and Trevor to fulfil any promises I may make.

I will tell you one thing I have learned and that is to be more accepting of myself and him, he isn't a duplicate of me, my priorities aren't necessarily the same as his.
He sees things differently to me and neither of us can claim our way is right or wrong, it is who we are and why should he change to suit me or indeed me to suit him?

Compromise.....something I don't think either of us were particularly good at but are having to learn now and we are learning it....slowly
Can't promise we won't still have 'words' at times ( well I have the words Trevor pretends his deaf) but I am surprised at how well we are adapting really, guess the partnership was strong enough to withstand the changes that have and are taking place.






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Paranoia.

Hello, here I am again. Why another blog so soon you may ask?
Well once again I feel the need to explain myself, why do I feel this need? Something as simple as a question in the comments of one of my other blogs has started me back on the road to trying to work out what people actually think when they read my blogs.
Or am I trying to work out what they think of me? And if so why?
Does it matter what people think of me?
Has it always mattered what people think of me?
Or is that yet something else that is connected to being disabled.
I do encourage questions, that's partly why I write blogs, I hope it gives people an opportunity to get to know me, and what life is like, sometimes good, sometimes not so good.
So comments and questions must be good, right?
This particular question asks how with my hands so terrible (I have put pictures on previous blogs) And the pain I am in do I manage to write such lengthy blogs?
The answer is simple, and quite straightforward, I have an iPad (luxury for some but necessity for me) And I dictate my blogs And the iPad writes them for me! Clever stuff eh?
A While ago I would have just read that question, answered it, and then just gone on and forgotten about it. So why not now? What has changed?
The easy answer is I have.
Anybody that has gone through and is currently going through this economic climate where everybody is watching everybody else, what they have, what they say, who they proclaim to be will understand where I'm coming from.
The questions with hidden meanings, the Feeling that someone may be trying to catch you out, to suggest that you are not who you say you are or that you're behaving in a way that is not honest.
I'm not suggesting that this innocent little question was anything other than that, the very fact that it has caused me to think this way is surely my problem.
I admit I read back through several of my previous blogs and realised how much of myself I put in them, I talk quite openly about my condition, about what has changed In my life for both myself and my husband and I suppose my extended family too.
This feeling of having to justify myself was compounded further this morning when the council surveyor knocked on the door whilst I was only half way to getting ready
To start my day, my husband opened the door and said to the surveyor 'I'll just check, my wife is not quite up yet'
Nothing wrong that you might think except it was gone 10 o'clock in the morning and I had wanted my husband to point out that he was in the process of helping me to get up due to me being disabled And that I wasn't simply having a lazy morning.
What on earth did I think this man was going to do? Rush back to the council? Phone the benefits hotline? And tell them that the lady of the house was still in bed at that time in the morning.
And what of my blogs? Do I now assume my readers are going to go running to tell that I indeed go out occasionally, that I can write blogs,
Am I in future going to put an explanation of how I still do the things I currently do?
No of course I'm not, I am who I am, I do what I do and I write what I write.
I am shocked that I have become so paranoid, I have no wish to take on the victims badge, I have no wish to live my life looking over my shoulder, being so very careful of what i say either by voice or by written word.
When did I become so paranoid?
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Politics, politicians & poison

Labour, Conservative, Liberal-democrat, UKIP, the Green Party, the socialist party.
I belong to none of the above, I have no real understanding of any of the above, I have said time and time again I am NOT political.
I do not understand the political game,
I DO understand right and wrong.

Politicians talk on all subjects, make decisions on all subjects,
I do NOT talk about things I have no knowledge of.
Politicians make those decisions based on finances, not for the benefit of the many but for the benefit of the few,
I make MY decisions based on right and wrong.
My perception of what's right or what's wrong? Well yes as I have no other experiences to draw from.

Politicians appear to be passionate about what they are doing.
I AM passionate about what I see, hear, feel happening to me and mine and those around me.
Politicians speak in riddles, don't answer with straightforward answers, twist figures and reports etc to 'fit' their aims.
I speak as I find, I WILL tell it as it is if the evidence is there, I WILL tell what I see happening, I WILL ask for answers and keep asking until the actual question gets answered.

I am mindful of the fact that behind the political front is a human being, a person who also goes home at the end of the day and I attempt to keep the personal from the political as much as possible.
But I have a problem understanding how a human being can see, be told of, read about what the party they supports policies are doing to me, mine, those around me, sick and vulnerable people and go home and live with their conscience.

It is a very emotive subject and keeping a level outlook is difficult if you read daily what people are suffering, if you take note of the rising count of deaths being caused by policies being made and changed by the politicians who appear at times to be answerable to no one.
I myself have taken a step back several times when it got too emotionally charged for me, when I felt so distressed I knew my sanity was at risk.
I have seen several very high profile activists collapse under the weight of their emotions feeding Into their already poor health and it makes me scared,
Scared for them, scared for me, scared for society that this is how it has become.

Why am I writing this? Because I wrote the poem below several days ago and felt it could do with some background, an explanation of how it entered my mind and why.
It is directed at no one person but is directed at the policies and policy makers that are destroying my faith in what I always believed was a humane society.

It's all over bar the shouting

It's all over bar the shouting
Reason has left the room
The loudest of voices echo
Bringing forth feelings of doom

It's all over bar the shouting
The quiet and timid are slain
No ears were proffered for listening
They felt not obliged to explain

It's all over bar the shouting
You can't force a fool to see
That single lightbulb moment
Was starved of electricity

It's all over bar the shouting
The painted on words have run dry
Unread by the mighty above us
Their vision fixed firmly on high

It's all over bar the shouting
The lies lie encased in deceit
The frivolous web is entrapment
Decency lies at its feet

It's all over bar the shouting
Swirling mists of despair drawing in
Humanity cloaked in a vile new season
It's you against me against them!


- Posted using BlogPress from my iPad

It's all over bar the shouting

It's all over bar the shouting
Reason has left the room
The loudest of voices echo
Bringing forth feelings of doom

It's all over bar the shouting
The quiet and timid are slain
No ears were proffered for listening
They felt not obliged to explain

It's all over bar the shouting
You can't force a fool to see
That single lightbulb moment
Was starved of electricity

It's all over bar the shouting
The painted on words have run dry
Unread by the mighty above us
Their vision fixed firmly on high

It's all over bar the shouting
The lies lie encased in deceit
The frivolous web is entrapment
Decency lies at its feet

It's all over bar the shouting
Swirling mists of despair drawing in
Humanity cloaked in a vile new season
It's you against me against them!



- Posted using BlogPress from my iPad

It's a sad world (isn't it?)

It is and there is no denying it, every day brings more doom and gloom and news that makes you gasp in disbelief or just shake your head 'how can fellow human beings do these things to each other or stand by and watch as these things are done to others?' Is a question I am constantly asking.
You could be forgiven for thinking that I am about to unfold yet another diatribe about the state of my life, my health or my well being but you would on this occasion be wrong.
I have the need to write a more positive blog for some reason, don't ask me why, nothing has changed really and even I can't work out how my brain works at times so you have no chance.
Like many who suffer with long term chronic conditions I have the usual ups and downs in my health and in my emotions so some days it's really not advisable to ask how I am doing unless you want the full weight of the worlds woes on your shoulders, and then other days you will be greeted with a cheery 'good morning' and my sense of humour will be evident for the day as I annoy everyone who comes Into contact with me.
Don't you just hate those people that seem to be able to put a positive spin on everything?
I have to attend hospital twice a week for the next 10+ weeks to try out a therapy on my skin taking a morning or an afternoon out of my week twice a week!
Positive spin......oh lovely, you're getting out twice a week.
Ok so I freely admit it, I am actually a very negative person, I can find the worst possible angle to anything and even when I am proved wrong or the end of the world doesn't happen I don't let it cheer me up and I certainly don't learn from it, I just decide that it means the world will end in a different way at a different time!
By the way I am still waiting for the end of the world, it's just around the corner somewhere you know.
But anyway while we wait I don't see any harm in having a few good days, a few days where we turn our heads away from all the hassle,stress and awfulness that's going on around us and allow ourselves to laugh a bit, smile a lot and act stupid for a while, even the blackest night turns into daylight when the sun rises and if your sun doesn't rise one morning there's always the torch ( if you have remembered to buy the batteries that I have forgotten for the last two weeks) see? Negativity is just so natural to me!
Yes I agree with you, this is a pointless blog about nothing in particular but it is MY blog to do with as I wish so if you don't like it don't read it.....ooops too late, you already have.




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Where have you been?

So where have I been recently? I haven't been on twitter hardly at all these past few weeks, (what do you mean you hadn't noticed?)
Let me start this blog by saying I am NOT political, never have been and probably never will be but I hate injustice of any kind.
With that in mind you can maybe see why I sort of fell Into becoming a bit of a mouthpiece on social sites for sick/disabled and vulnerable people.
Initially I was being affected by the unjust changes being brought about by this government, my benefits were stopped and a fight ensued before they were reinstated and I was placed in the group I believe I should be in, although that's not quite the end of the story for me as my benefits will come under attack again at any time I am currently settled and managing on what I get.
So why would I continue to highlight the problems others are having and continue to fight the injustice this government is causing?
Because I care, strange as it may seem to some of you I care about what is happening to others, I always have had bucket loads of empathy for my fellow human beings, and animals, and any breathing thing actually, yes ok maybe my empathy levels are extreme but that is me and I can't change who I am can I?
So I have continued the fight in my own little non aggressive way for the past few years, RTing others, linking to articles etc and having my say when something really made me saw red.
At the same time I have some lovely friends on the social networks that I enjoy a chat and a laugh with and others who I have tried to support at times just as they have supported me when needed.
A few weeks back I made a normal frivolous comment and was taken to task for doing so by an activist that felt my ordinary comment showed apathy and the British malaise that was the problem with 'people' like me.
I answered and a few words were exchanged and forgotten and I moved on, a week or so later I watched the same activist using aggressive language to another person and although I was in no way involved in the exchange it made my mind up for me that it would be best to unfollow this person.
Mistake number one......I told them I was unfollowing and why.
A short exchange of words followed and that was the end of that......but for me it wasn't, I was genuinely upset, upset by the attitude shown towards me.
Now it is possible I AM too sensitive for my own good, things that really shouldn't upset me do, so what do I do?
Do I stay off the social networks?
Do I only follow and talk to my good friends?
I obviously can't harden up or I would have done by now.
Now please don't get me wrong, I am not laying blame at anyone's door here, the problem is mine and mine alone, I am just trying to explain my short absence.
So there you go, I am me, I will get upset at silly things at times and may well need a break from social sites, I will also continue to fight in my own little way.
For me the social sites are many things and we all choose how we use them don't we?
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Is that sore?

This is my left hand, my right hand and feet and the other parts of my body affected by Psoriasis are not quite as bad as this right this moment although they have been and will be again.
Notice the swelling? That's the Psoriatic arthritis that is in practically every joint in my body and means movement is hard and painful. This hand is useless now as are several of my joints and this obviously affects movement etc.
Twice this past month I have been questioned regarding my disabilities, Once outside of my own home as I was getting into the car that is parked in a disabled bay and again sitting in the car outside the town centre waiting for my mum to finish shopping.
Why? Why am I suddenly being asked to prove again and again that i am entitled to the disabled bay,the blue badge and the fact that I no longer work?
Why did I have such a fight with all the stress that entailed before I was placed in the support group of the ESA benefit?
Why am I going to have to do the fighting all over again for DLA benefits next year?
And why am I going to have to prove this continually year after year after year When this is a progressive disease, I am not going to ever get better!
What kind of person/people/society allows and in some cases encourages the bullying of sick/disabled?
Are my neighbours checking my blinds every morning? And if they are still closed at 9am do they label me a scrounger?
Do they even stop to think I may have spent a restless night in pain?
Have they any idea how tired this condition makes me feel?
Do they know anything about me at all before they pass judgement?

Hang on a minute......
Why should they? What right does my neighbour, the woman down the road or the man who spoke to me outside my own home have to question me?
Because this government has painted this picture of us all living the life of Riley, sitting in front of our flat screen televisions once we have bothered to roll out of bed, drinking, taking drugs and defrauding the rest of society by spending your taxes on our lazy feckless selves.

Reality check.....
We lost not one but two wages when I became too ill to work 3 years ago, after struggling alone for a year my husband had to become my carer, look at my hands and bear in mind my mobility problems etc and it is clear I can not cook for us, clean for us, shop and personal care as in washing and dressing etc also now requires his help, can you imagine getting soap, shampoo, cleaning materials on my hands?
He gets £53 a week for his caring role!
I get ESA & DLA at the moment although I am in constant fear of one/both being stopped at any time when I next get assessed and judged 'fit for work' maybe?
Life of Riley? Does it sound that way to you?
Would you like to change places with me?
Do you think I have it easy?

I am not writing this for sympathy and for goodness sake please don't pity me, I am writing it because I am disgusted at some of the comments being left on some articles/blogs and some of the replies I have seen on twitter and Facebook, some people I consider friends have 'liked' and commented on several of the articles bashing sick/disabled/unemployed recently and it saddens me that the hateful government rhetoric is having the desired effect turning people against others and causing a split in society between the haves and the have nots.

So what am I trying to prove?
Nothing, I have nothing to prove to anyone, you have no right to judge me, you have no right to label me or anyone else, you don't know the circumstances.
if I sit with my hands down by my side my disability is invisible to you for that moment, If I hadn't posted that picture of my hand you wouldn't have known this is what I have would you?
we don't know what is wrong with people just by looking at them.

Life is hard enough for lots of people right now and we can do without others making it even harder so before you judge someone to be a scrounger or benefit cheat stop and think because there but for the grace of god or a change of circumstances goes you!









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Progression? Bah humbug

It's that time again, time for me to ramble and for those of you who read my ramblings to raise your eyes heavenwards and tut loudly.
I have had a rough few weeks and as I always do I have drawn back into myself whilst my head tries to get some understanding of what's changed and what it means for me.
This is about my health again and the twists and turns it is taking me through as it progresses and first I fight it, then I deny it, then I (hopefully) understand it and lastly I attempt to accept it.
What does disability mean to you?
Someone who has problems with certain things? Mobility maybe
Blindness/deafness
Some sort of physical problems and the pain etc associated with that.
Rightly or wrongly I guess that is where I placed myself and my condition, the skin disease means I have problems with sore hands/feet/ears etc
The arthritis means my joints are stuck/swollen etc
And of course the pain caused by these things are what I considered to be my disability. It was this disability that forced me to stop working, stopped me from being able to drive and so on......
So I accepted that, accepted my limitations and continued on with my life as best I could.
So where does being ill fit in?
I don't mean a cold, the flu or any one of the numerous illnesses you can have and recover from in weeks or months, I mean a never ending worsening illness that is connected to your medical condition.
Consider this....you do too much one day and please bear in mind that 'doing too much' for me now was just doing normal things a few years back, anyway you do too much one day and then for the next few days you're ill, not a bit tired or weary but physically too ill to go out or even get out of bed.
Other symptoms like headaches (temporal arthritis)
Side effects from medications you need like nausea, dizziness, lethargy
Infections that follow one another through your body
Abscesses
Overheating so badly that I stand outside whilst hubby shivers in a sweater.
Hang on.....these aren't what I signed up for, these aren't disability
These are symptoms of an illness
But I don't want to be ill, I don't want to have a chronic medical condition that makes me ill.
(Ok that's the foot stamping over)
I went to talk to my GP as I was having some pretty rough side effects from new Meds she had wanted me to try and whilst she agreed some of it may well be down to the Meds she also asked what else I had been doing for the few days previous to feeling so rough.......
Well, I had been busy that week, stayed at father in laws for four days, went to hospital appointment on day five and then to see my parents.....so?
So Penny you are not accepting your 'chronic condition' is progressing and you are at times not going to feel well.
It IS a chronic condition/ disease and it does make me feel really rough at times but I had been finding every other possible excuse to explain it away rather than look at what was really happening to me, why?
Because I had a hard enough job coming to terms with being unable to do things due to being disabled without accepting that the disability is down to a chronic medical condition that also makes me feel so ill at times.
I can almost see those of you in the know shaking your heads, it's the chronic condition that caused the disability, they are one and the same thing and the progression is what I need to accept and deal with.
Ok, don't push me, I will get there in my own good time and in the meantime I shall curse and scream at what's happening to me so cover your ears my friends.
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Another step sideways

It's 3.30am, what sort of time is this to be sitting here contemplating writing?
I am riding the emotional roller coaster again at the moment and just before I dip back down Into the dark recess I thought I would do what I usually find myself doing at these times and put pen to paper......ok, fingers to the iPad!
The week started well, Claire (daughter) took me and Molly (puppy) to Hatfield forest with my grandson Morgan for lunch. My family have now got the idea that I can't walk very far at all but his wasn't going to be a problem as she was going to sit me under a tree in the shade while she and Morgan and Molly enjoyed walking along the river and round the lake. We will gloss over the fact that said seat under tree was a wee bit further than she remembered or that I very stupidly fell over on my way back to the car, all in all the trip out was a success.
Monday was also my grandaughters birthday and we had offered to take her and her baby brother ( and their mum of course) out for a birthday meal that evening so Monday proved to be a full on busy and enjoyable day.
Tuesday is always town with mum day, it's a struggle but those of you who know me will know I make every effort to do this each week as it is special time spent with my mum.
Wednesday I was in trouble, I hurt, I could hardly move and staying awake seemed to be beyond me for most of the day.
So ok we knew there would be payback for enjoying the beginning of the week, I expect it now and after my unfortunate fall On Monday I knew I was going to be in pain and have trouble moving.
I accept all this, have been here before and know that with rest and a few sensible days I will return to the normal levels of pain and restriction so what's this all about?
Well it seems that I don't only suffer physically I also suffer emotionally as my mood drops drastically and I made the mistake of asking myself why, trying to analyse yourself is never a good idea believe me!
Continued after a few hours sleep........
It seems that physical tiredness and extreme pain breaks through some of the defences surrounding my emotions and gives me a path to them that if I had any sense I wouldn't take....
I looked in the mirror and didn't like the fat middle aged disabled woman that stared back at me, I raised my arm in a wave hoping against hope that she wouldn't respond but of course she did, this IS me now!
Slowly but surely this condition/illness/disability is taking me away from who I thought I was and replacing me with .......?
Firstly the jewellery had to go because fingers swelled and skin reacted to anything but the purest gold...
Then choice of clothing became very limited due to needing help dressing and not being able to do buttons or zips etc, pull on trousers and baggy tops are now the norm.....
More recently I have had my hair cut short to help with the over heating problem and also as hubby has to wash my hair for me, again ease of use......
I think the problem is none of these has been my choice just as stopping work, stopping driving etc was also not a choice I made, these things have happened to me, out of my control.....and there's the rub isn't it? Control, we all like to believe we are in control of our own destiny, that we can make choices on which paths we choose to follow through life.
Acceptance is a word I hear often and use often myself, you have to reach a place of acceptance of who you now are, who you become each time things change, I understand this believe me I do but there are no signposts to acceptance and I have no sense of direction as my husband and kids will tell you.
And anyway I can't arrive at acceptance looking like this, I need to smarten myself up,
Hhhmmmmm
bright clothes maybe to brighten my mood?
I do actually like my hair short
I really can't do much about my weight but maybe I can try eating a bit healthier than I do
It is possible that this is the road to acceptance I am on and I just need to side step these barriers when I come to them.
When I see the woman in the mirror next time I will attempt a smile after all she is on this road too.
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