Today I made the major step, to me, anyway, of getting my ESA50 form filled in at last. ESA50 is part of the process of applying for Employment Support Allowance, which should be my income while I cannot work. It is a form where I have to describe in great detail every part of my illness - each problem that I have, every drug that I take, and describe how it affects my life from walking and sitting to washing and going to the toilet. This daunting form has been hanging over me for weeks because I have been unable to face filling it in.

To recap, I have had ME for more than a decade, with all of the resultant problems like extreme fatigue, muscle pain, brain fog, insomnia, all much worse after any movement or activity. I also get frequent migraines, sometimes every day, and have suffered from those all my life. I’ve had diabetes for two and a half years, progressing at a disturbing rate, and a host of other problems as well. All of that combined makes me pretty flaky when it comes to getting anything done and it has ensured that I have a very intermittent work history. I’ve managed to work some years, but I have been stuck in my bed or my house for years at a time too. The last few months have been particularly bad and to cap it all off I started to get depressed about it all. I suppose it isn’t really surprising that I ended up suicidal given all of my health problems plus a sprinkling of my business going down the drain as a result, and imminent homelessness.

Unfortunately filling in an ESA claim form is very difficult for me. The simplest problem is that I can’t use a pen to write more than a sentence before my hand is in excruciating pain. Then there is the problem of concentrating enough to write every detail without forgetting anything or making mistakes. My ME causes severe brainfog a lot of the time and I often cannot concentrate or remember anything. Since it is also important to write problems in a way that correlates to the assesment criteria, most people don’t stand a chance of getting this right, never mind trying it with my concentration problems.

The biggest problem preventing my filling in the form has to have been my depression. Since I became depressed a few months ago I have frequently found myself paralysed by despair, literally unable to move, unable to do anything except focus on despair and on all my problems. Attempting any serious task or responsibility has usually resulted in this state and the ESA form has been the biggest trigger of them all.

It isn’t just filling in the form that has been difficult for me; after I applied I also had to deal with the DWP claiming that my sick note had run out after a week and demanding another one, despite it being for a month, and with them claiming that I hadn’t told them that my wife was working, when in fact they were told at the time that I applied. These two problems added to my mental block on completing the form.

Anyway, the story does get a little bit better. My sister works for a charity that is part of the DIAL network. (Disability Information Advice Line) She pointed out to me that I could get help from my local DIAL and so I gave them a call. My form was already late, and so despite their normal waiting time of six weeks they managed to get me an appointment within two weeks.

Today I met with a lady from DIAL and she went through the form, asking me questions and breaking down each question into small parts that I could answer. She took all the information that I told her and wrote it on the form in a structure that matches the assessment criteria. She also talked to me at length so as to build an idea of everything that needed to be written in as additional information and wrote a whole A4 page about my illness. Having done this lots before, she already knew a lot of the problems that I face and so I did not have to drag it all out of my brain fog.

Despite all her help, the meeting was two hours long and was an ordeal for me to get through. I had already taken my maximum dose of painkillers to get there for 10am, and spending two hours in a chair in an office at the job centre was extremely difficult. At one point I couldn’t answer her questions any more and I was encouraged to take a rest - I ended up lying on the floor! I stayed there while part of the form was filled in but eventually had to get up which was even harder work and very painful. By the end of the interview I could hardly speak and barely stand but I was helped to stagger back to the waiting car and she even carried my bag.

So after all of that, I have a form filled in with far better answers than I could give, and probably the most accurate portrayal of my illness that has been written so far. (I did actually show her my blog post, A morning with ME, and was told that I should print it out and include it with my forms.) It is a great weight off my mind, or at least it will be shortly when I photocopy the form and finally post it. I will definitely ask DIAL for help with any future applications, assuming they survive government budget cuts.

My next step is to try not to worry too much about my impending Work Capability Assesment.