Meanwhile back at the ranch… CreativeCrip 8 Months #AfterESA

Regular readers of this blog and followers of the related @CreativeCrip Twitter account might recall in February of this year I rashly pulled myself out of ESA hell in favour of being self-employed. Being honest – I knew at the time that I still wasn’t ready to make such a move. Atos phoning me at home about another WCA was the catalyst. I literally could not face having to deal with them again and was so desperate that taking myself off the merry-go-round seemed like the only thing that would bring some relief.

It’s been touch-and-go ever since, largely because of the appalling lack of support from my old GPs & CMHT Psych Team. As I’ve said before, being a Native American merely Permanently Resident in the UK is not without problems. Every inquiry and appointment turns into an immigration interview – which is not only unnecessary it is quite inappropriate. One of the things that I constantly struggle with in trying to get help is that the professionals I am meant to be dealing with don’t leave their politics and prejudices at home. It’s much the same dealing with engineers from telephone companies, supermarket delivery drivers and neighbours. Everyone has really strong opinions on immigration, benefits and disability and there is no hesitation in imparting their wisdom to me no matter how malicious and ill-informed.

I’ve had to make even more changes in the aftermath of dropping my ESA claim.

  • My finances were in such a dire state that I had to borrow money to be able to move house and secure it by paying six months up front. There is no feeling of failure quite like crying to your mother at the ripe old age of 46 and having her cash in some of her pension to bail you out.
  • Instead of the accessible ground floor flat that cost £650/mo (downgraded from another ground floor flat that was £800/mo) in Cardiff, I am now living in an old split-level miner’s cottage in the Valleys that is nowhere near being disabled-friendly. It only costs £375/mo – great for someone with very low income. Accessible bungalows and ground floor flats come at a premium I simply cannot afford having already exhausted my redundancy on paying the mortgages of other people.
  • I need to find a new GP and essentially start all over again, hoping that I’ll get the support and referrals I need to manage my complex health needs. I haven’t found the courage to actually get myself out of the house to do this – and October marks three months living here.
  • When I moved house this past July I hadn’t seen my old GPs in over a year – our relationship was *that* adversarial. I just couldn’t cope with having to deal with them again knowing that, quite frankly, they really didn’t give a shit what happened to me as reflected in their attitude every step of the way.
  • The meds I need I haven’t had for some time now so of course my mood and manner are more down than slightly down (I’ve never been an “up” person and never will be). Having said that – there is a difference between Clinical Depression and just being in a foul mood. I am at least astute enough to recognise which is which in myself., but of course not having effective treatment for the Clinical Depression doesn’t help. I had been on 200gm of Sertraline a day but hypersomnia won out. The fact is that the Clinical Depression *is* really kicking my tail in every way, shape and form.
  • It seems that I may be an undiagnosed Aspie (and the results of Simon Baron Cohen’s online test support this along with some others) – but unfortunately before anything could be explored on that basis the old CMHT changed Psychiatrists, which they did every few months it seemed. I also missed a lot of appointments because I could not make them for physical or financial reasons or both. Making appointments three months in advance was never going to work. I also begged the CMHT to allow me to have phone conferences. This was laughed at…why I don’t know.
  • I have now been on a list to see a spinal surgeon for over two years. Every time I contacted the hospital they were annoyed and told me they would get back to me. Now that I’ve moved house I will have to get a new referral.
  • I am also overdue for knee surgery and this has severely impacted my mobility. Again I will have to get a new referral thanks to the house move.
  • I am angry about my situation and who I am because of it all the time… and no matter what I try it just doesn’t subside. As I’ve said before, all I’ve ever asked for is the help and support I need to get back to having a somewhat productive life. I’m not the only one in such a predicament but it astounds me still that politicians from all three major UK parties have strong opinions about disabled people and work, yet they seem to go out of their way to make things as difficult and inhumane as possible for us. Everything from Disability Living Allowance to Access To Work to Working Tax Credits is such a nightmare to navigate and especially for anyone who is completely alone.

Some people say that I have to “fake it until it’s real” and other similar Mindfulness pearls of wisdom along admonishments to “play the game” – both of which go down like a lead-weighted balloon. Being fake just does not compute. I am who I am and what I am is tired… just so very tired of the never-ending fighting for absolutely everything in every part of my life. And I am acutely aware that for every person who might *get* what I’m saying there will be a number of detractors. That’s fine… I can only ever tell the truth – my truth. It’s the same for all of us.

So here I am carrying on doing everything that I am told to do and hoping against all reasonable hope that things will get better.

 

 

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I still don’t want to live this life – the real world 2 months #afterESA

Today marks the point of no return for many disabled and ill people. An estimated 40,000 – 100,000 of those in our community who have worked will lose our Contributory Employment Support Allowance (ESA)  thanks to the new one year time limit railroaded through Parliament as part of the recent welfare reforms.

I’m one of them. Continue reading

#ATOSuni update no. 5: Derby U. sleight of hand

The Masters of the Universe running French IT firm Atos Origin are quite an ambitious lot. Continue reading

Media: “Technical Difficulties” with Tim Abbott – 24 Feb 2012


Resonance FM
Image via Wikipedia (CC “Fair Use”)

 

 

Today marked my first foray into radio.

I was a guest on Tim Abbott’s “Technical Difficulties” radio show on Resonance FM.

You can listen to the Podcast at http://podcasts.resonancefm.com/archives/8452

Continue reading

Millionaires and the welfare state

New at thecreativecrip.com :

Millionaires and the welfare state http://t.co/K0PB9EDR

Not idle, just unsupported: my original #disabilityUK #dpulo idea for #benefitscamp

I‘ve had many crises over the past few years which chipped away at my resolve to stay positive and be grateful that things could never get any worse than they were in those moments. Becoming disabled is a challenge I never anticipatedI have followed the discussions of the Welfare Reform Bill in the Commons and now the House of Lords and it has literally driven me to despair. What hope can ordinary people have if a disabled Peer, Baroness Tanni Grey-Thompson, is publicly disrespected and her concerns about the inaccessibility of the chamber summarily dismissed by her esteemed not-yet-disabled colleagues?  Continue reading

CarerWatch Forum – latest takedown by Atos

“We have been informed by our hosting company that we are under threat of legal action by ATOS and have therefore been taken down.”

 

CarerWatch Letter to Atos Legal Department

We have many members who are very fragile and the sudden disappearance of a support group has caused a lot of distress and fear. Some are ringing us in tears. We cannot get in contact with all of them though as we have lost their contact details through the closure.

All this distress could have been avoided if you had had the courtesy to contact us first and tell us what had been posted on our site that you considered libellous. Obviously if any post was possibly libellous we would have removed it and all this distress could have been avoided.

 

 

#CreativeCrip #DLA Appeal Result! #disabilityuk #ukcare – UPDATED

The DLA Appeal  has gone in my favour.

  • Severe mobility impairment finally recognised.
  • Care needs acknowledged but minimal award granted.
  • To be reviewed Sep’13.

Sobbing hysterically!

Shame it’s going to go on rent, food and utilities…!!

23 Aug 11 Update:  

Contacted by CAB whom I forgot to call in the heady days since the result came through. We agreed that though the Care component is disappointing, acknowledgement of my mobility needs is a huge step forward in the right direction.

I will not pursue a review of the Care decision. This has been an incredibly soul-destroying experience in some respects. The case will be closed until the Review, at which time I will definitely enlist the assistance of the CAB should I summon the courage needed to put myself through this all over again.

Not “disabled enough” and mobility aids

I shouldn’t be surprised by things like this any more and yet I still am. I woke up this afternoon to discover that one of the Founders of The Broken of Britain, Disability Activist Kaliya Franklin (@BendyGirl) has been denied an NHS power wheelchair. She’d been on a waiting list for an assessment for some time. Unfortunately her slim hope was dashed today.. Continue reading