We had already said “Good night”, told each other that we loved each other and Adam had shut the bedroom. Then, it opened again. “You did well tonight, answering all those questions.” I was sat in the dark on the edge of the bed, still trying to put my earplugs in, but that made me smile. All I had done was sit with Adam in the living room, filling in the remains of the PIP form we have been slowly working through. Am I really that so far gone, that answering questions about myself, requires such a statement to be made? Actually, I am.

Our previous attempts had ended up with me totally frazzled and feeling like I had just been asked to write an essay, on my opinions on War and Peace, an essay, that couldn’t be one letter shorter, than the original book. It is incredibly hard to sit and have someone read out word for word, the questions, then to sit and formulate the correct answer, then dictate it.

Reading has been a problem now for a quite a while. I used to be a really good at reading, despite the fact that I have dyslexia. I had learned a system that meant my brain would put in the most logical word when I came across one, that I couldn’t fathom, as long as it was in my head, it wasn’t a problem. Fortunately, once we leave school, we’re seldom asked to read aloud. It worked for me and was amazingly accurate. Something has gone wrong in this system over the last few years. These days, I insert the most ridiculous things, words that change the entire meaning of a sentence or leave me totally confused. The worst thing is, once I have inserted that word, I can no longer see the original. It simply doesn’t exist. When it comes to reading a blog, or details of anything online, well my perceptions and conclusions don’t really matter, but government forms or mail are important in a very different way. The result is frustration, agitation and frequently brings tears. So now I have to sit like a child, listening to Adam reading it all out slowly, to be sure that I am understanding exactly what is really there. Even though I know what will happen if I do, the temptation to grab the letter or form and read it myself is huge. The longer the paragraphs are, the more likely on top of that is the possibility, that I will lose concentration, and have to ask for him to backtrack.

Filling in forms, especially important ones like the PIP form we were filling in last night, means I have to come up with not just answers, but accurate ones that give a clear picture of my situation. Giving such answers, is something that is filled with dangers. Clearly the first is my memory. How am I supposed to give the date of this or that consultation? Remember when or where something first happened, or how things have progressed? This is my memory. There are 4 years of daily writing here, but searching it, is difficult and finding details, is even harder. Adam has to not only read out the form to me but, he also has to write down all my answers. If that form was online, then no problem, I could have sat here and typed them all, spell checked and deleted and redone them over and over. Paper forms have boxes to be filled, for people other than me, to be able to read, something that simply wouldn’t be possible. My once script perfect letters are now spider markers walked over by an elephant. It was my art teacher who taught me to write. Letters didn’t work for me, but when they were turned into art, I got it. I even remember one of my ex-bosses saying that my acceptance letter was one of the most beautifully written pieces she had ever seen, I hate to know what she would say now.

So there we were, Adam reading and writing and me, trying to give full answers. My concentration doesn’t just take me away while Adam reads, but it also fails me while I am answering. If my answer is long, plainly Adam will start writing, then ask me “what came next?” Next, next to what? Once more I’m somewhere else, I don’t remember what I said, so once more, Adam has to read back not just my answer so far, but often bits of the question, so I can work out, just where we are, and so it would go on. It has been a slow and difficult process for both of us. When you have been ill for so many years, it’s almost impossible to answer some of the things that they want to know. As for the current situation, well, to be honest, the main problems in answering them, is the fact, it is a paper form. There are never enough lines, or big enough boxes to allow for you to make a mistake and correct it. The words you choose, and the way things will be read by a stranger, are so hard to predict. One word can change the whole meaning of an answer, one word, you can’t even change, if you spot it on reading it back. If, it could be done online, I could spend time, just as I’m doing right now, writing, thinking, writing and re-writing again. No, there’s no pressure, no reason to be wound up as tight as a drum, but they know that’s just what it does, and we haven’t even got to the point when they might want to carry out a medical.

Together, we have filled in their form to the best of our abilities. This doesn’t mean that it will be what they are looking for, all we can do is hope. Did I do well last night, I think we both did.

Please read my blog from 2 years ago today – 03/03/2014 – Keep giving

Despite Adam being on holiday again today there is a strange silence, he is actually in bed snoring rather than on the settee. I have to admit his being here at all had me lost as to what day it was when I got up, mind you it doesn’t take much for me to lost so that wasn’t really a surprise. I have noticed this weekend something strange that I am still trying to work out why when he is asleep I select my TV viewing by what I know will least annoy him? It’s mad the things we do because of……