Monday, 4 February 2013

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!

1 comment:

Sarah Boyd said...

Hi Penny, I have enjoyed reading your blog.

I also blog about my journey with RA and I am trying to spread awareness of what it actually conists of.

http://porcelaindoll-xo.blogspot.co.uk/

Have a look :) x