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Austerity xmas

It’s freezing cold here at the moment and I’ve been in bed for the past week recovering from an activity last Saturday that drained me. Whilst sitting here twiddling my thumbs I thought I’d do a bit of the old writing and let you know what’s going down for me right now.

Firstly I’ll tell you I’m feeling a little bit furious, a little bit sad, a lot tired and incredibly deterrmined.  This festive period is being defined by a new challenge in my life and that is to take on the current British government (not literally but you’ll see what I mean soon). I try not to be political on here but I will make no bones about my disgust and distaste for the current lot of clowns in Parliament.

I have watched from the sidelines for the past few years as more and more sick and disabled people have been thrown into extreme poverty and some have even died or taken their own lives (according to CAS this number is in the tens of thousands, yes you heard that right) due to Social Security reform in the name of austerity.  NHS Digital also report that in 2016 rates of self harm and attempted suicides for ESA claimants had risen by 43%.

I was watching knowing that eventually they would come for me.

When the brown envelope (brown envelope-itis is becoming a thing) dropped through my door I had to take a deep breath and centre myself before I opened it, I knew it was my turn on the merry-go-round. I filled in the form for PIP which is in itself a bit of an ordeal. Having to relive everything that has happened and  putting into black and white how different things are for you triggers stuff. All that stuff you’ve gone through and endured comes bouncing back up and straight out of your eyeballs.

Once this was done it was a question of waiting for the assessment. Ah the asssessment! Where one of the evil twins (ATOS or Capita, urgh!) send round a ‘health professional’ to ask questions, observe you and push for concrete answers to extremely abstract concepts – they also make you touch your toes (despite the assessor telling me that this part of the assessment wasn’t relevant to my condition she made me do it anyway then used it against me in her report). The assessment is not fit for purpose, it doesn’t factor in invisible disabilities. Yes I can touch my toes but I can’t get out of bed to do it!

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After waiting a few weeks for the outcome then being refused any sort of financial assistance I had a meltdown, a proper meltdown. It dredged up those feelings of hopelessness and uselessness as well as having thoughts  of suicide. Once the despair abated, then came the anger and determination, I was not going to take this lying down (well maybe I’d be lying down but I’d fight). So I researched the appeals process and began the frustratingly slow meander through the highways and byways of the Social Security system. I requested a copy of the assessment report (you can do this, it’s your right to know what was said) and it was like reading about a different person.

Now I’m not saying that an outsourced agency like Capita will lie about people, ah…. ok… yes that’s exactly what I’m saying. I’m also aware the staff get bonuses for every person they throw off benefits, sort of like a cruelty pay rise. The report could have won the Booker Prize for Fiction. It was full of contradictions and things I didn’t say as well as omitting things I DID say. I was also deemed not disabled due to being intelligent and aware of my condition, I MEAN, GIVE ME A BREAK that is the most outdated and Victorian attitude about the disabled I’ve ever come across. This idea that being disabled equates to some Quasimodo-like existence where we are not articulate and smart and funny. We’re either ‘inspirational’ people who beat the odds to win medals and row the Atlantic single handed or we are dribbling no hopers. There is no middle ground. Society wants you to be one or the other, no shades of grey. Heaven forbid you’re disabled and dare to scuttle out from your cave and try to have fun and enjoy your life.

So we are now locked in a festive waiting game. No decisions, no supplementary payments, no hope until after Xmas. As a knock on effect of PIP refusal Mr Braingirl has also had his Carers Allowance stopped so we are truly on our arses right now. BUT they will not beat us. I want to see this through, it will take all my energy and all my courage but we will go to court and have our say. If we fail, we will try again. I’m a working class Northerner which means I’m genetically predisposed to rolling my sleeves up and taking on the powers that be.

This is the thing with ‘austerity’, the rich and powerful have all they could want but they want even more and not only that, they want to stop you from having any too. They are creating a culture of ‘unworthy poor’ where having less is some kind of disease and something to scorn. They are deciding who to throw crumbs to but making them somehow ‘other’ in the process. Ably assisted by a media who help deflect your anger from where it should really be directed and instead make you angry at refugees, the sick, the disabled, the poor, the young and the vulnerable. Your brother or sister who is struggling and trying to access a lifeline that was created to help when circumstances beyond their control affects their life. This degrading and dehumanising system that is now in place was unfortunately voted for by the public, a section of the public who think society exists solely for themselves, the ‘I’m alright Jacks’ the ones who have lost compassion somewhere and forget that we are one, that we work together. The public who don’t really believe that this is happpening.

This is not something that is occurring in a film, this is real life. YES it is happening, NO it is not made up and it’s killing your fellow human.

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4

Make it go away

It’s Monday morning, it’s dull and rainy and I’m tired. The Spring, like my mood has gone a shade on the grey side.
I’ve been sat up in bed today on my Twitter and realised I’m in that lovely place again. I’m setting up camp in hopeless and lost town. I’ve no idea how long I’ll be here for but all I know is that it feels horrid and I seem to grind to a frustrating and upsetting halt.

There is usually a trigger to my jaunts into this place and I have to sit and think about what has caused it, it’s usually something that occurred a few days earlier and seemed fairly innocuous at the time. I had a busy (for me) old time of it last week, I was on local radio and TV for Action for Brain Injury week. I had to go to the BBC here in Belfast and do a quick interview and then get filmed at home. It was an early start but I pushed through even though I knew it would make me fatigued because it was important to spread awareness. I was very pleased to have done it and it brought a little bit of excitement into my day. That day I also had another appointment later in the afternoon to go to so by Tuesday evening I was completely done in.

Add to this my period (sorry) it’s not something often talked about in brain injury circles but when you do mention it, you get lots of ‘oh my god, YES!’. The menstrual cycle, often a time of mood swings and cravings becomes ‘Period Part 2: The Revenge’ when added to a brain injury. I get deep sadness and also fatigue on top of tiredness on top of fatigue. I also get more aches and pains in my surgery site at this time which gives me lots of nerve pain and thuds and pins and needles, these make me anxious. As a result I often become completely immobile for a few days. It saps my will and my precious energy. I cant even begin to describe it adequately but again, unless you experience it yourself you’ll never understand. It’s not I assure you, a very fun time.

So yes, I’ve been a sobbing tired mess for 4 days. But there’s been something extra this month and I couldn’t figure out what it was, then the penny dropped

penny droppedI had another epiphany this week, one that sneaked in quite quietly but means I have to readjust myself once more and this readjustment always unsettles me. I have just started accessing a vocational service called CEDAR, its a service to help me get back into education or employment as well as finding my way back into my hobbies again and it was during my meeting with them that my mind shouted at me “YOU’VE GOT A BRAIN INJURY!” well yes, you may be thinking dur, no surprise there, but let me explain.

I have up until this point thought ‘oh, I have a brain injury’ now I KNOW I have a brain injury. I have rather foolishly been thinking it happened to me, but I’ll be the one, the one that it didn’t affect in any way, the one who will be 100% better. Well sorry sunshine, but this aint necessarily so! I am a service user of agencies put in place for people with a disability, I have a disability, I finally realise that now. I have a disability that makes me sad, tired, unable to do what I used to do and here’s the clincher, IT WILL ALWAYS BE THIS WAY, it’s going nowhere. It makes me have to look at what I want to do and see how I can make it manageable, is it even a possibility for me anymore? This made me incredibly sad and feel defeated. This has been the cause of my retreat into myself again.

As always though, I sit with these feelings, I accept them and I start to see the other side…. eventually.

For now I am sad, frozen in bed, I am tired and I am hating my injury, hating how it’s changed my life and crying for my loss again. The grief in full swing once more. THIS IS NOT EASY.

I know this song is on a very specific subject but there’s a lot in it that resonates with me right now.