it’s my turn

As I rolled under the quilt earlier today, defeated once more by the whole getting up thing, I wondered if I’m hiding away from the world.

My brain is full of the many things I want/ need to be doing, and anxiety. Oh, bloggy buddies, anxiety. Avoid it if you can. It lures you into a vicious circle and prohibits progress.

Hiding amongst the volunteering paperwork, the bank statements and the bills is a Questionnaire. The questionnaire that strikes fear into the souls of the chronically ill and the disabled across the UK. In truth I haven’t considered it yet; it’s been enough to have its malevolent presence in the house. The friendly advice workers who I’ve relied on in the past are no longer. I have two weeks to make sense of it all. (They gave me 4 weeks- it took me two weeks to realise that Disability Action weren’t going to respond to my phone calls.)

There’s a letter, telling me dates, what to do now, what happens next etc. It is practically incomprehensible.  I can send off medical documents with the questionnaire, but not medical statements. Anybody have any idea of the difference?

There’s a long paragraph telling me that the support I receive on the grounds of illness or disability will be converted to Employment and Support Allowance (ESA) only if certain conditions are met. It lists the conditions, and then throws me into a spin. These conditions are different in Northern Ireland and can be found in the Welfare Reform Act (Northern Ireland) 2007. This letter only goes to people in NI- they couldn’t have taken the time to actually tell us what the conditions are? I can’t imagine the conditions are very different, but in the absence of the friendly advice workers, I’m going to have to look up the legislation to be sure. I still haven’t got to look at the Questionnaire, and I’m freaking out.


ESA50 is called Limited capability for work questionnaire. The answers you give…will tell us about how your illness or disability affects your ability to work.

About you

About your treatment

About your illnesses or disabilities

About your medication

Part 1- physical functions

  • moving around and using steps
  • standing and sitting
  • reaching
  • picking up and moving things
  • manual dexterity
  • communicating with people
  • other people communicating with you
  • getting around safely
  • controlling your bowels and bladder and using a collecting device
  • staying conscious when awake

Part 2- mental, cognitive and intellectual functions

  • learning how to do tasks
  • awareness of hazard or danger
  • coping with social situations
  • staring and finishing tasks
  • coping with change
  • going out
  • behaving appropriately
  • eating and drinking

There are several questions per section and a box for additional information. Can I go up 2 steps if there is a rail? Can I lift my arms above my head? Can I lift a milk carton? Can I press a button, or turn the pages of a book? Can I learn how to set an alarm clock? Can I get food and drink to my mouth without help or prompting from another person?

Well, it depends…

Ah, highly employable then.


I have referred you to Sue, at Diary of a Benefit Scrounger before. I don’t know how she does it. She has led the arguments against how the UK government treats the sick and disabled. She has put herself in hospital, fighting for fair treatment for us all, pointing out the inconsistencies in policy and the realities of life for those too ill to work. She’s my go to woman for articulate information and comment on what’s going on.

To cheer me further, a recent report The Impact of Welfare Reform on Northern Ireland, (Centre for Economic and Social Research, Sheffield Hallam University, October 2013) indicate that the changes to social security implemented by Dave and his chums will take £750 million out of the Ni economy- equivalent to £650 per year, for very adult of working age- making it the worst affected area in the UK. Belfast is hit harder by the reforms than any major city in Britain. A key effect of the welfare reforms will be to widen the gap in prosperity between NI and the rest of the UK. The reforms without a mandate, which purposefully vilify the sick and disabled and blame them for the economic problems, will hit this city hardest. We don’t even have the opportunity to vote for the parties which make up the British government. Connection?

I need to gather my resources, and all the energy in the world, to demonstrate my employability, or lack thereof. A few hours volunteering in my pjs, with the odd day out, does not a reliable employee make.

If only I could get out of bed.


22 thoughts on “it’s my turn

  1. And when I clicked ‘like’ I was really thinking, I understand. I live with a disabled person, and see first hand how terribly difficult ‘normal’ functioning can be while to an outsider nothing looks wrong. The social services programs in the U.S. leave much to be desired, and the hoops physically or mentally disabled people have to jump through to obtain the barest pittance to live on are staggering. All the while I see people who have no disability abuse the welfare programs and dwindling funds are used to give all sorts of fat cats bailouts, and government officials huge benefits packages. Anyway, I will refrain from further comment except to say, I feel for you and hope all turns out as well as can be.

    1. Thanks, Janie. An invisible illness presents particular challenges, indeed. People see me on better days, hear from me on the days I’m up. It’s the majority of days, when I’m not out, when I’m not communicating, that are the problem

  2. There is no such thing as ‘normal’ just what is, and sometimes the rest of us need these reminders. You help me a lot as I no longer feel so much need to tell my son who suffers can’t-do-anything-today to get on with it. He would if he could. Just do what you already do and I hope someone helps with this ridiculous form (present fill-in and future tearing up). I also think Sue is terrific.

    1. We do what we can when we can; sometimes the challenges are too great. How that gets conveyed by a rubbish form to a resistant system, I’ve yet to figure out, but I have found help.

  3. Shave your head or wear a cast and you get sympathy, because people have an outward sign to hang on to. Look well, but suffer internally and god forgive, quietly, then why would anyone think you are ‘ill’?

    You have my full sympathy.

    My problem right now is with the health service. I have two appointments on the same day this incoming week. The were made for the same day at two different hospitals and in the WRONG order. It took me a day and a half to get somebody to admit the order was incorrect and that both could actually take place in the one hospital, one after the other. Thankfully, Elly will come up from Dublin to take and bring me back to another hospital the next day for the removal and return of the equipment.

    1. The variety of ways in which things get mucked up never ceases to amaze me. patients really need to keep on top of stuff and we’re not always able to do that. Enjoy the time with Elly, if not the testing 🙂

  4. The form sounds awful- you’ve a lot on your plate at the moment, no question. I know exactly what you mean about anxiety getting in the way, and slowing you down as well. Thinking of you xx

    1. I have found an adviser!! Hurrah! just knowing there is someone to help is an enormous relief. I’ve downloaded all sorts of helpful/ incomprehensible documents, so I will try to have a stab at it before I see her, if I’m fit for it.

      1. Thank goodness for that. I do hope she is good. I have finally sent off the docs to the probate office Nd every time I called for advice they were so helpful and patient.
        I shall keep my fingers crossed.
        I do find it outrageous that you and others should be left trying to fathom these papers.
        But then I find it outrageous that with little of no understanding of financial affairs I should be responsible for decisions about making sure my pension is with the right provider and will indeed provide…

    1. This government certainly does, Andra! I expect feeling worse to be part of the process- I spend loads of time doing what I can and not beating myself up about what I can’t do, but this focuses the mind on real limitations. Uugh. but it will get done and I will cry and it will be over for a few weeks until they decide that I’m a fraud…

  5. This is going to sound strange, if not absurd to you. But to me, from what I read just now, and previously, words which originate from your thoughts outwardly projected, you seem to me stronger than I. Stronger then I for your perceptiveness, stronger than I for your caring of others. Stronger than I for speaking your mind. I see the person, as is, I don’t see the condition as such, though I know what it is thanks to you.

  6. Just keep breathing … one step at a time and all the other cliches that do actually work. Don’t look too far ahead. This awful government will be gone in 2 years time, please god …you’ll get the form done, as you did the previous xo

    1. I’m taking the anxiety meds and I’ve found an adviser. It will be rubbish and soul destroying, but then it will be done for as long as it takes them to decide I’m very employable…

  7. I have problems with forms in general – they send my stress levels through the roof – so I can’t imagine what it must like to have a disability and know the form is critical to your continued survival. Take it in bite-sized chunks and know we’re all rooting for you. The best revenge will be seeing the bastards gone in 2015.

    1. It took me two weeks to even look at the form; the whole process is so terribly stressful. The suggestion is that if you can press a button you should be in a job. Grand. If they can find me a pressing buttons job that I can do at home in pjs with regular naps and irregular, short. hours, I’d be delighted to take it.
      I wish I was sure as you all that we’ll get rid of them- the public apathy is still winning over outrage

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