Doing well?

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……

 

 

 

 

 

Nothing sounds really good

I find life generally confusing at the best of times, but when the government send you a letter, stating the process of making a claim on their new PIP system, you expect that letter to be accurate. Simply because of what the letter said, Adam had taken the morning off work to make the call on my behalf. He spent yesterday evening online, going through all the information available. On the letter we received, there was a list of questions we were to be asked, personal questions about my health, my physical and my mental abilities.

On the letter we received, there was a list of questions we were to be asked, personal questions about my health, my physical and my mental abilities. Online, he discovered the questions had multi-choice answers, and every answer had points attached. How you answered them, right at this early stage, could determine whether I would continue to receive money from the government to support me, or not. It appeared that black and white and even more scary. So like anyone else would, we sat and went through them, so that we were ready to give detailed answers. When ready, Adam made the call. From what we had read, we thought it would take about half an hour, it took less than 10 minutes.

Honestly, it was simple, they did ask questions, but not one of the ones that were in the letter. I had to give permission for Adam to give the answers for me, but other than that, I said almost nothing. Neither of us are sure why, but Adam said that her whole attitude and tone of voice changed as soon as she had entered my national insurance number. As soon as she had, she said something about claiming the high level of PIP, then went back to checking details they already had. We are guessing that there is something on the system, that more or less, pushed her to the end of the call. Whatever it was, we are straight through to the next round, which are the written forms, they are on their way to us. Now, we think, that the letter must be generic to all claimants, regardless of the level of payment they are on, or, are hoping to claim. Those of us who are already on the higher rates, skip further into the system, but it is a letter that is worded to cause stress to us all. I can’t help feeling the intention is to intimidate and make you not even bother applying.

I have to admit, that the few seconds that I was on the phone with her, I found her really hard to understand, she spoke so quickly that anyone, who has any problem comprehending what is going on, would have been totally lost. I am so glad that Adam was here to deal with the bulk of it, as I wouldn’t have managed at all. It is only because I knew how these systems work, that I was able to pick out enough words, to know what I was saying “yes” to. At the end of the call, I had to say “yes” for the second time, to a string of words that I can only assume, were to say that we were sure that the details we had given were correct and that it was against the law to give fraudulent information. As I said, I assume, as it was a high-speed garble of words. Having worked both as an agent and as a manager of a call center, I would have shot any member of staff who spoke that quickly, and we weren’t dealing with the chronically and possibly mentally ill.

Yesterday, I sat here and I wrote to my mother, not the final letter that I am going to send to her, but a letter which contained everything that I wanted to say, but never did. This writing “thing” is truly amazing. Just putting down all those words and feelings that convention says, you just don’t ever say to anyone, especially not your parents, felt so good. Anger and pain when it is inside you, is one of the most destructive things there is. I honestly thought that I had got rid of it all years ago. I spent several months, thinking through all the people who had hurt me over the years, everything that was said or wasn’t said, every physical action that left it’s scar, and I forgave them all. It was one of those cathartic experiences and I truly thought that my Mother had no hold over me any longer. Then that card arrived, with what I knew was her having a dig at me in the biggest way she could in just a few words, and anger reappeared. I wasn’t angry about our ancient history, I was angry because her word implied, that I was the one ignoring her, that I was the one who had broken the link. When if there is any blame, it belongs at the feet of her precious son and with her. Now, well not this second, but I am going to write another letter, one that says just what is needed, but with more finesse and a clarity that can’t be miss-read in any way.

I don’t know why, but I didn’t expect to still be as tired as I am today. I had it in my head when I went to bed last night that I was going to wake-up this morning, feeling as I normally do, tired, but not knackered. It is clearly going to take me just that bit longer to recover than I expected. Mind you, having stress thrust upon you when you’re in a state of exhaustion, probably doesn’t bode well for recovery. Tomorrow isn’t going to help much either, as I simply have to make another batch of psyllium pancakes. This time, though, I will be just making the dough. Adam and I talked about it after the last batch and decided that going forward, I will do the easy part, and time it so that the dough will have risen, by the time he comes home from work. I know, pancakes are made from batter, not dough, and don’t normally contain yeast, but these do. Psyllium is odd stuff, it has been a long trial and error process getting it right, but we got there. To me, they look like pancakes, taste like an odd sort of pancake and are, therefore, are pancakes. If you saw one, you would say, “that’s a pancake”, so pancake it is.

Whatever you call them, even sitting on my perching stool in the kitchen cooking them is more than just tiring. I don’t normally ask Adam to do anything in the evenings, other than sort out my meds. Normally, he just comes home and sits with me watching the TV until 9 pm. Then he has a frantic half hour, filling the washing machine, dishwasher and tumble drier, emptying the bins and having his shower, then back to the TV. If Teressa and John hadn’t been here this week, we would have made them then, but Adam wanted to clean the house, I didn’t object, but the result is, I don’t have enough pancakes to last to next weekend, so tomorrow it is.

I don’t normally ask Adam to do anything in the evenings, other than sort out my meds. Normally, he just comes home and sits with me watching the TV until 9 pm. Then he has a frantic half hour, filling the washing machine, dishwasher and tumble drier, emptying the bins and having his shower, then back to the TV. If Teressa and John hadn’t been here this week, we would have made them then, but Adam wanted to clean the house, I didn’t object, but the result is, I don’t have enough pancakes to last to next weekend, so tomorrow it is.

It really does feel like a long time since we just had a day. You know one of those things that starts and ends and all you can say is, “nothing happened”. Right now, “nothing” sounds rather good.

 

Please read my blog from 2 years ago today – 18/02/2014 – Burning nerves

There never seems to be a reason, something that you can pin a change to, but I know in the last days or maybe even weeks, that although my pain levels are steady the other symptoms, sensations have…..