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…..

 

 

 

Maybe tomorrow

A letter arrived the other day, that as always Adam opened for me, it’s my turn to apply for PIP (Personal Independence Payment). I have been in receipt or DLA (Disabled Living Allowance) now for years, without it, I would have found life impossible, but it’s all change in the system and from everything I have heard, it’s not all good. I knew this day would come, they started rolling it out about 3 years ago now, I, though, have been just sitting here quietly just dreading the day that the letter would land. I am so glad that I chose ages ago to let Adam open and read all my mail, as I seem to get myself so confused and frequently distressed by even the simplest piece of news. Adam told me when it arrived and over the next couple of days, laid out the basics of what it contained, but when I got up this morning to find it sitting on my desk, with a note from Adam, explaining the other information I would need, I still got myself into a spin.

I find it so hard to accept that I was once a person who ran so many aspects of an international business, and now, a simple letter puts me into a panic. How has my brain diminished so far? I know from my writing and what I do on Twitter, that I can still appear as an almost normal intelligent woman, but I know, I’m not. Ask me to do anything, even the smallest thing that is outside of my normal everyday life, and I am beyond lost. The instance I am even faced by the idea, that I have to do something unusual, the panic begins. I have had so many experiences over the last years, that have taught me that my brain now has only one role, that of the trickster. It will misread, mishear and confuse me at any opportunity that it can find. From the simplest of things like getting the times wrong, the ones that are right there in front of me on the screen, for the evening’s TV viewing, to not being able to see that something is advice, not a fact. I quite simply, can’t trust myself about anything, and always check with Adam, that I have managed to get it right, before, I take any action. It’s easier that way, as if I don’t, I just land up wound up and in tears, over my stupidity. I wouldn’t trust me to do anything, that I don’t have the opportunity to check it all not just once but ten times, and even then, it doesn’t surprise me, that I get it wrong. Worse still, I all to often, don’t see my error until it’s far too late to fix it.

I can admit it now, but the last four years that I was working, I wasn’t. I knew things were falling apart, so I set to, and I automated almost everything that I had to do. I worked from home, so I spent the first three months writing computer program after program, that did every aspect of my daily work. By the end of my first year, I had reduced my actual physical daily work, to half an hour. Yes, I had ad-hoc work to do, but I had been doing the job for 10 years by that point, there was little that I hadn’t done before, so I at least had the basics required sitting at my finger tips, it was just a case of updating it. I didn’t feel guilty at all, that company had worked me into the ground for years. It was purely due to my teaching myself to programme, that meant I could even produce what they wanted before I was housebound. They wouldn’t spend the money on software, so I had to build it. I was also on 24/7 call out, to fix, patch and keep running, a phone system that was officially obsolete and I kept it running for 5 years, 2 years past the point of dead, without a penny more on my wages, it wasn’t unusual for me to spend my entire evening, or the bulk of the weekend, working on, no extra money and often, not even a thank you. They had used me for years, so no, I didn’t feel guilty doing what they asked, just not in the way they expected it to be done.

When I was made redundant, I knew inside that no one was going to employ me. I knew because, I, wouldn’t have employed me, but I tried. 18 months on, I accepted the truth. My brain, was no more up to it, than my body was able to getting me out of this house. Four years on beyond that, and I am the proud owner of a useless lump of flesh, that isn’t worth the space it takes filling up my skull.

At first, it was just the different, the unknown, the things that I wasn’t comfortable with, that upset me. Now, even the predictable throws me into the depths of despair. PIP is totally unknown. The person I will be speaking to is totally unknown. The questions they will ask me, well I might have a clue, but I know already, that I will at some point, land up in a stuttering mess. Talking to people on the phone, is daunting. What if I get someone who’s accent I can’t understand? Will they have the patience to let me think and to talk? Will they be upset, if I keep asking them to say things over and over, because, I don’t understand? If I get the questions muddled up, can I fix it later? I hate the phone even more than I hate meeting strangers face to face. What are they thinking? Are they laughing at me? Shaking their head and rolling their eye’s? Are they taking the mickey out of me? Why do I have to do these things? Who sits and thinks up the best way of upsetting those who don’t have the mental capability to deal with such a situation? Why can’t they just send me a form? Forms are good, you have time with a form, you can practice what you want to say, over and over, choose the best and write that one down. Forms are good, I like forms.

I can’t do this today. Not today, maybe tomorrow, by tomorrow I will have had time to think. I will have had time to talk to Adam, to go over it with him. I wish I had understood better what he was saying when he told me this letter was here. He makes light of everything, I guess he just hopes that I will be fine, this time, I won’t need him, this time, I’ll just do it. Why would he think that? No, I can’t do this today. I am too agitated by life to step into something new. Maybe tomorrow, maybe then I will up to picking up that phone and typing in those digits, maybe tomorrow, I will be able to actually talk.

 

Please read my blog from 2 years ago today – Staying happy

Sorry, sorry for going over so many things in the last few days that have been so serious and somewhat a downer, it’s a fact thought that chronic illness has so many things attached to it that make it easy……