Wednesday was officially 14 working days since the DWP got my ESA1 Form so I called up the DWP to find out what was going on. When I eventually got through (10 minutes on the Vivaldi Loop of Doom) the very nice lady I spoke to told me my Claim should be ‘actioned’ by ‘close of business’ that day, but that since I had previously claimed ESA and been found Fit for Work, it may have been given to a ‘Decision Maker’ to look at. This spread chills down my spine. The term ‘Decision Maker’ is terrifying for me. Genuinely – just writing it now, my stomach turned over and my vision went weird. The ‘Decision Maker’, that anonymous beast,is they who found me Fit for Work last time*. The lady on the phone asked me if I was claiming for a new condition and if it was on the form. I was, but it wasn’t (I didn’t have a diagnosis when I sent the form in) – I asked her if she could make a note of it on the electronic form, on my electronic information. I had to spell Superior Semi-Circular Canal Dehiscence. I now have to use a speaker phone for all my calls as I can’t hold the phone to my ear – the vibrations coming into my ears make me dizzy and give me ear-ache, part of the SSCD mentioned. And speaker phone is not good for sibilants. She made the note and told me I should send in my Specialist’s letter confirming the diagnosis – the original letter, not a copy, and gave me the address. Call concluded.
Then I called the Jury Central Summoning Bureau. I’ve been called for Jury Duty, and I am not fit to undertake it. I am on many medications, and quite a few warn you not to work machinery when you’re on them let alone make decisions about people’s lives. I suffer from near constant headaches and constant chronic neck and backache, migraines, a lack of concentration and memory and now hearing problems. Also I am unreliable – I can usually manage 1-2 ‘good’ days a week**, if a case went on longer than that, I would not be guaranteed to make it through . I would not want me to be on my jury. That is a personal point of view, about me. I think that Disabled people should be on juries, just not this one. My call was to explain this, but it was futile. I’d sent in my Form, but it only had a very small space for me to explain my situation. It has tick boxes for reasons you can’t attend. One of them refers to the Mental Health Act. I have not been Sectioned, so that does not apply to me. I sent a hand written letter with the form explaining why I would not be fit to be on a jury, and I just wanted to confirm this with the service. However, they could discuss nothing on the phone as they’d not got the form yet….I was called for July 7th, and I didn’t want to cause them trouble. We shall see what happens.
Where is the Confusion? Where is the Panic? Well, that comes next. At about 5pm on Wednesday a horrible thought came to me, well, a horrible realisation. I’d asked the DWP lady to make a note of my new condition, but not that I was going to send in new documentation – new proof. If my claim was going to be ‘actioned’ by the end of the day (6pm) I needed them to know that new evidence would be coming to them, so as to stop them making a negative, uninformed decision. Though I mentioned this to the lady on the phone, I had not made a specific point of having it put on my record. Which you have to do. Since last years ESA debacle I have been concerned, near consumed, with Doing Things Properly. Being thorough. I did not go on JSA because I did not want any excuse for the DWP to think me able to work – and because it would be wrong. I am not looking for work, I am looking for a way of supporting myself – I am looking to make a life that supports me, which is different from merely looking for work. I want to gain qualifications and experience to enable me to become self-employed, so I answer my own abilities and my own body. And I want to get healthy enough to have the stamina to do this. A person in this position is not a person to go on JSA. All year so far I have been attending medical appointments, trying to a) get a diagnosis for an ear problem I have had for over 2 years*** and b) get help with my escalating Depression – my self harm, which is new to me, and my constant thoughts of suicide**** c) trying to get some help understanding my ‘Social’ problems – what may be mild Autism. This is not a fanciful fashionable thing. My closest friends are Autistic (and female) and beyond sharing many of their and the spectrum traits, it has been suggested to me before by a Psychotherapist that I may also be on the Spectrum. Before she died my Mum asked me to get tested, so I am going to and finally d) attending Physiotherapy and avidly undertaking the exercises so as to get my body working as well as I can.
I’ve also been working all year on getting an Advocate to help me with my ESA application. I have contacted my MP and many, many charities, as well as a journalist, to reach this end. I now have an Advocate – someone who has known me now for over 5 years – a lady from MIND who helped me go to Tribunal in 2010 – when I first applied for ESA and was found Fit For Work. So for 5 months I’d been working on ESA when I got the first form. Got the Fit Note, sent it in. After this I got my SSCD diagnosis formally. I was so relieved. I also had an appointment for a Mental Health Assessment, and a further appointment made to see a Psychiatrist. Further relief. But I forgot. I forgot, in my relief and the seizures that followed, that I should have been informing the DWP of these developments. I forgot that I should send letters and proof to them as they came in. The relief at getting said letters, of seeing doctors and Mental Health Nurses, of finishing my Physiotherapy and being referred to Pain Management flooded my mind and drowned out my DWP-sense*****. So on Wednesday at 5pm, I called the DWP again to inform them that I was going to send new letters, new ‘evidence’ of my situation and conditions. I rang up, chose an option and was put on hold. This time the Vivaldi Loop of Doom lasted over 30 minutes. I have a portable land line phone, and it was on speaker. I had to take the phone (and my NI number) into the toilet with me while I waited to get through to the DWP – not done that before. I took the phone to the sink while I filled a kettle and made tea… But I got through and I am very glad I did. Very glad. Glad I kept waiting. Head pounding, heart pounding. I told the New Lady on the Phone about my situation. She was so kind and understanding. She told me she was going to put a note on my file, and she told me it would be better to get my documents scanned at my local Job Centre, as they would be sent directly and immediately to the DWP, rather than taking a week. This had not been told to me by my last Lady on the Phone. It’s a good thing to know. I’d much rather have my documents scanned and sent directly, than posting the original letters etc. (which I still need to go to appointments) to Ireland, and wait 9 days to hear from the DWP. The relief was overwhelming. I would go to the Job Centre on Thursday and get my letters scanned. I had a nosebleed – a stress nosebleed, and was so badly affected by the stress and anxiety that I was quivering and I believe my eyes and general demeanour was affected – my Dad noticed that there was something wrong, he said my eyes were ‘going everywhere’. My Tinnitus became so loud and engulfing I couldn’t hear the Parakeets through the open window.
Thursday – preparing to go to the Job Centre and to the Polling Booth. I was shaky as I was anxious and had not slept. I had to get to the Job Centre. Had to get the evidence to the DWP. Was it enough? Letter re: ears, letter and report from Physio, letter from Mental Health Service… Would they believe me? I opened my e-mail to find a message from a DWP Decision Maker telling me the ESA had been awarded me. That was it. Relief again. I went to tell my Dad that he would not have to drive me to the Job Centre that day. I was shaking again. He made me sit down, and suggested I have a volume of alcohol to calm my nerves. Instead I took my meds (Citalopram, Propranolol, Diazepam, Omeprazole, Gaviscon) drank tea and got dressed. But I knew I may have to get the forms scanned anyway. I don’t take anything for granted. I was happy but jangled all day. Which was wise. Today (Friday) I got a text message from the DWP telling me that they had ‘received my claim’ and that ‘my Fit Note must be sent as soon as possible’. Hmm. I sent my Fit-Note with my form. And I know they had received my claim – that was on June 2nd. And according to the E-mail I had been awarded the Benefit (at the initial low level of £70 p/w). Was this text really about the other letters, but is the only message they send? Is it automated, so that whatever evidence is needed (Fit-Note, medical report, letter in blood…) is called a ‘Fit-Note’? It worried me again. So I am worried again. Monday I shall be at the Job Centre, getting my letters scanned.
A post-script of sorts. Beyond sending the medical and diagnostic letters, and evidence of appointments, I am also sending the DWP photographs. Photographs of the cuts, scratches and scars made on my arm and legs in the last months. Self-harm of this sort is new to me. Previously I had pulled my hair out exclusively. But in the early months of this year, that evolved. As I have said, I undertake every aspect of my ESA application comprehensively. And that includes the photos. They are my proof. I don’t like this. I’m not an exhibitionist. I am not proud of my situation. But I have to do this. Not only for myself – not only because I have to know I’ve done all I can to prove to the DWP that I am not a healthy, capable person. That I don’t function as they, and I, would like. But also for other people like me – with invisible illnesses that are made much worse by the terror caused by lack of money and the disbelief of the DWP and others. I am lucky. My Father is in a position to support me, and more important, he is willing to do so. At least 90% of people who need support do not have this. I am aware of it. So I am doing this for them too.
*I have no idea of who that person is. I know I have a letter with their name on. I have not remembered it – for fear of having an object of hatred. I don’t want that. It’s their job. I may think them an arsehole, but people have done much worse for money.
**A ‘Good Day’ is a ‘Vertical Day’ – a day I leave my bed. A day I may get dressed. I may leave the house.It is not guaranteed that I will have even 1 day a week like this.
***I first went to my GP over 2 years ago to get sent to ENT. I was put on medication by them, but the referral never happened. I went back a few times but nothing happened until late last year, when I saw a different GP.
****I was brought up a Catholic. And I promised my Mother that I would not end my life before my Father’s had ended. I also promised him when Mum was ill that I would not kill myself – because he said he could not take it. It doesn’t stop me from visualising it. And I’ve even got to the stage of visualising my Dad living with my Brother in my absence. I could not do it in my Dad’s house. I made 2 promises and I have my religion – these are the ties that bind.
*****Like Spidey-Sense, but more foreboding.
Something for the Weekend: French woven silk, c.1760 – lace and leopard print brocade, in the Victoria & Albert Museum, London – Amazing pattern for the 1760’s. More information can be found on the V&A website, and copyright for the image belongs to the V&A.