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……
Two Rooms Plus Utilities 
Ha! I’m telling you we are twins!!!! Our lives are running parallel…sigh…the many forms, memory issues and docs that don’t fill in paper work accurately…which is why I lost my disability😢 Good luck, let me know how it turns out. I am in the middle of filing an appeal! Can you picture that??? My brain and literally 3 1/2 feet of records/paperwork and survallence videos to go thru! 😱 I have 6 months and the added stress is killing me! No money from them AND appeal papers 3 1/2 feet high AND now I’m a perinoid crazy person because I think EVERYONE I come across has a hidden video camera watching me! Hmmm can I get PTSD from that??? Omg😱😱😱
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I’m pretty sure if you asked a psychiatrist, there is probably a huge number of conditions that all this could cause. I just love the way that people who are already clearly ill in the eyes and opinions of our doctors, can be found fit and healthy, by people with no medical qualifications at all. I’m equally sure, that is something that could be argued over by lawyers for years.
All we can do, is try to stay sane and as calm as possible. I know, that’s impossible, but our government can now preform miracles, so why shouldn’t we.
Take care (((Hugs)))
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I’m dreading mine, I have requested a reassessment as my condition has got much worse over recent months, I know it means I will be going from the Dreaded DLA to PIP transformation and all the trivialities that gives. Good luck to you and Adam that you get a smooth process from here on in.
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I don’t think there is a single one of us who are not dreading this whole PIP process. There have been so many scare stories in the press and on TV, but they never mention the ones that go smoothly, as they do exist, I know some. I keep telling myself, just as Adam does, “it will be fine”. I think right now I am saying far more often than “This too will pass”. I hope we both go through without issues, but only time will tell.
Take care (((Hugs)))
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It sounds like your forms are very similar to the disability forms we have up here in Canada. Absolutely grueling. It took me months to get mine filled out. And they’re all printed with small boxes that require way too much information to cram in there even if it were typed. I’m so thankful for a fellow from the MS Society here who coached me through the process. He said it’s best to just fill in each box with “see page 1, 2, etc. attached.” And then I could slowly type out my answers. Trying to fit them in with handwriting would have simply not worked. Then there’s that added stress of knowing that most people who actually do qualify still get rejected the first time around and have to go through a whole appeal process. Oh the stress! But probably the worst part for me was spending so much time being forced to look at each and every disability issue. For the most part, they’re just part of life and I don’t spend time dwelling on it. Thinking too much about all that makes you feel DEPRESSED. Who needs that on top of everything else?! Thankfully I was approved the first time around.
I also find that I substitute written/typed words when my brain can’t make an immediate connection. I do seem to have very mild dyslexia, but I think part of the problem now too is that typos are so much more commonplace than they used to be with most messages coming from smart phones, etc. So I find now that my bran just substitutes words even when there isn’t a typo and I have to go back, slow way down, and carefully try to figure out what was said. It’s really unnerving sometimes.
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I have to agree with you about sitting thinking about each question, I found myself somehow more disabled by it. As you say, on an average day you don’t think, it just the way it is,but those form find you analysing every tiny aspect and what it means to you.
The UK system doesn’t allow you to add in sheets. You have to use the form and that’s it.The only supplementary information your allowed to send is from Social Work Department, if you have their assistance. Now I have to wait as they will contact all my doctors for their views, before telling me what happens next. Most people have to go for that so called medical. I just hope I have said enough.
I have to agree about the Typo’s and that strange short hand many use. For the likes of me, well I don’t stand a chance of understanding any of it.
Glad to know you achieved a first attempt success. I have my fingers crossed, as miracles do happen.
Take care 🙂
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I can read, and understand fairly well, and can answer questions, most of the time, with research. But it will sometimes…stile that…always freak me out, Stuart normally has to do it. He has all my records, he has my power of attorney, is authorized at every doctor to see my stuff. So many times, I just can’t do it. I freak. I tried filling out paperwork to get special transportation so I could go to some appointments by my self. It was like 15 pages long and kept asking the same questions over again….I couldn’t do it. We decided I couldn’t use it anyway, what if I had an attack during the trip? Not good. I need my caregiver with me every time I walk out the door.
Recently I had to fill out a psych evaluation. 11 pages of intake first. I went through it, but left so many pages without signing because I could not grasp what it was saying…we’re they saying they were sharing my info? I’m confused? He read it, everything was fine, I was livid about it when I read it. I did not understand it at all.
He has filled out so much….I’m proud of you.
You did good.
I panic, one reason I didn’t file for disability for 8 years after my dr said I was disabled. And Stuart did all of that too.
People don’t realize just how much he has to do for me.
I can’t talk on the phone since I lost my hearing, he has to make all of my calls. That’s a lot.
It’s a full time job and he already has one.
Again, you did great.
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Well as my post says, it was a double act. Without Adam, I couldn’t have done any of it, just like you. Our husband both seem to share a role, in our lives, acting as our brains, when it comes to anything beyond just sitting here typing and watching TV. I don’t understand how a brain that can do what is a complex act like typing our words, can’t manage a form or a phone call. Once again, in an odd way, it’s good to know that I’m not alone with these issues, no matter how odd they are.
Take care 🙂
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…and my docs says to me…you lost your disability? “…Well I have a couple of friends with MS and they work”… I say…well good for them…but what I really wanted to say is, well I can’t say it on this forum but you get me drift! I also have chronic migraines (12-19 a month) failed back surgery, HE prescribes me huge amounts of massive pain meds himself….but I’m ok to work…you IDIOT! (sorry, thanks for letting me vent…)
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YOU ARE AMAZING!!!. SO SICK; AND DYSLEXIC TOO.!!!. .AND YOU WRITE SO BEAUTIFULLY. YOU ARE DEFINATELY ; MY HERO.
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Spell checker and Grammarly are the most wonderful tools. Try reading a few of my posts from 2012, quite a different story. LOL 😀
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